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Vol 1, No 1 (2012)

Courtesy of the Robert Pope Foundation

An open access, online journal covering all aspects of pain

ISSN 2047-0800


Vol 1, No 1 (2012) October 2012

Editor-in-Chief Dr Rajesh Munglani Pain Medicine Consultant

The Journal has been created in recognition of the fact that not all information or advances in pain medicine can be presented in a randomised controlled fashion.

The editor welcomes contributions. Please email kate@joopm.com to submit an article for consideration.

The Journal will publish papers on clinical practice, basic science, ethics and medico-legal aspects of pain. Issues around suffering, theological, social, psychiatric, psychological, education and resources limitations in pain medicine will also be considered.

www.joopm.com email: info@joopm.com Editorial Board

Assistant Editor-in Chief Dr Turo Juhani Nurmikko Assistant Editors Dr Joshua Adedokun Dr Ganesan Baranidharan Dr Arun Kumar Bhaskar Revd Dr Mark Quinn Bratton Rev Canon Dr Adrian Francis Chatfield Dr Neil Collighan Dr Andrew Cooper Dr Simon Dolin Mr Marcus Grant Dr Sanjeeva Gupta Dr Shamim Haider Dr Dalvina E. Hanu-Cernat Dr Andrew Lawson Dr Kevin Markham Dr Patrick McGowan Dr Vivek Mehta Dr Charles Pither Dr Andrew Ravenscroft Dr Jonathan Richardson Dr Manohar Lal Sharma Dr Michael D. Spencer Dr Simon James Thomson Pain Fellow Representative Dr Kiran Sachane Copy Editor Paul Nash Journal Manager Ms Kate Dougherty KJD Communications www.kjdcommunications.com

Contents ‘Rerum cognoscere causas’ – ‘to know the cause of all things’ 3 Rajesh Munglani, Anup Bagade Revisiting physician-assisted suicide and euthanasia: understanding pain, suffering and compassion in a theological and societal context Mark Bratton

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Reflections on euthanasia, pain and suffering Rajesh Munglani

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Ethics and end of life care Carole Tallon

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Why we still need a change in the law on assisted dying Paul Badham

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Autonomy’s suicide Nigel Biggar

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Assisted suicide in the UK Brendan McCarthy

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Epilogue: ‘Lord, now lettest thou thy servant depart in peace . . 91 . for mine eyes have seen thy salvation’ Christopher Cocksworth Survey of buprenorphine transdermal matrix (BuTrans) use in chronic pain service Thanan Elalingam, Rajib Dutta, Rose Block

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A case report on the use of SPECT-CT scanning for precise diagnosis and treatment of C1/2 arthropathy after failed cervical disc-replacement surgery Mark Miller, John Pattison, Stephen Lord

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Scalp dysaethesia Sangeeta Das, Neil Collighan

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Chronic pelvic pain syndrome Sophie M. Shotter, Neil Collighan

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An unusual presentation of back pain Daniel Sellers, Neil Collighan

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‘Rerum cognoscere causas’ – ‘to know the cause of all things’ Dr Rajesh Munglani MB BS DA DCH FRCA FFPMRCA 2 Dr Anup Bagade MBBS, FRCA, FFPMRCA

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‘Felix, qui potuit rerum cognoscere causas’ is verse 490 of the ‘Georgics’ (29 BC), by the Latin poet Virgil (70–19 BC).1 It is literally translated as: ‘Fortunate, who was able of things to know the causes.’ This sentence is often written in the present tense instead of the past tense: ‘Felix, qui potest rerum cognoscere causas’, which means ‘Fortunate is he, who is able to know the causes of things’. The latter half of the phrase, ‘rerum cognoscere causas’, is the motto of a number of institutes such as the London School of Economics.2 Perhaps no other aspect of pain practice has generated so much controversy as the dilemma of diagnosis in pain clinic. It is estimated that about a quarter to half of our patients in pain clinics are treated without ever establishing a diagnosis.3 It is accepted in the pain community that pain is a symptom and not a diagnosis, and in the majority of the cases, treatments aimed at the cause (if any known) have already been tried by referring physicians. Consequently, some of the pain physicians hold the view that pain clinic is not a place for diagnosis.4 However, it must be emphasised that pain medicine is an evolving specialty and in the last few decades we have begun to understand and elucidate some of the mechanisms relating some diseases to specific types of pain and the progress made in our understanding has been exponential.5 However, treatment in pain can be problematic if we do not know what is causing the pain. Patients with similar pain symptoms may have very different underlying pathologies and, therefore, the response to a particular treatment may seem almost unpredictable. In such situations, careful observation may allow us to advance our understanding. The view of the power of observation and the overturning of well-accepted ideas has been historically demonstrated in our understanding of the nature of the motions of the planets. Intuitively, we feel that we stand still on this Earth, and the Sun, planets and the stars move around us in concentric circles. The geocentric theory, attributed 1 2

Pain Consultant, Cambridge. Pain Consultant, London. Journal of Observational Pain Medicine – Volume 1, Number 1 (2012) ISSN 2047-0800


to Ptolemy and regarded as self-evident to the ancients, was upset by the further more careful observations of Copernicus. He noted that the irregular movements of the planets around us suggested that a more plausible explanation might be that all the planets (including the Earth) move around the Sun.6 Galileo (who was credited for the birth of modern science) supported the heliocentric theory of Copernicus, and suggested how the phenomena of the tides supported the notion that it was the Earth that rotated both on its axis and around the Sun. Galileo was heavily persecuted by the religious authorities for his views and lived much of the latter part of his life under house arrest. Similarly, the observations of Kepler advanced understanding further by explaining why there were two tides per day (solar and lunar) and that the orbits of the celestial bodies would be best described as elliptical, so throwing out the residual Ptolemaic devices (i.e. epicycles and eccentric circles) which had been required until then in order to explain the change in the planets’ orbital speeds. This brief digression on astronomical understanding underscores how continual observation is the key to the refinement and progression of knowledge. Although apples fall to the ground and this is attributed to the intrinsic attraction of objects as defined by the theory of gravity, it would only take one apple falling ‘upwards’ for us to question the general applicability of this theory. The Nobel Prize in Physics 2011 was awarded to Perlmutter, Riess and Schmidt whose observations suggest that not only is the universe expanding, but its expansion is speeding up rather than slowing down as would be predicted by the theory of gravity and so has led to the postulation of ‘dark energy’.7 Recently, scientists at CERN apparently observed some subatomic particles travelling faster than the speed of light; they have reproduced this observation a further 15,000 times. They were so worried about their results, they had published them online and asked other scientists to suggest where they may have gone wrong. The observation was finally attributed to a faulty timer issue and the world of physics breathed a deep sigh of relief, as the speed of light remains reassuringly constant. However, what if they had not got it wrong perhaps? If history teaches us anything, it is to be cautious and humble as the theories and models of yesteryear are overturned just as the ideas of Newtonian mechanics detailed in Philosophiæ Naturalis Principia Mathematica, were upturned by the subsequent ideas of Einstein who thought that Newtonian mechanics was no longer enough to reconcile the laws of classical mechanics with the laws of the electromagnetic field, which in turn led to the development of the special and general theory of relativity. A further problem to be addressed is how do we decide whether a particular treatment is likely to be effective in a particular patient or not. In the past, personal habit and the customary practice of peers were the deciding factors. It was clear, however, that many doctors would believe in the effectiveness of their treatment, regardless of any evidence to the contrary. It would only take great response in one patient to ensure that the doctor would continue to offer a particular treatment to subsequent patients, that is there is a natural bias toward the positive.

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A number of years ago, in seeking to improve medical decision-making, a group of doctors at McMaster University in Hamilton, Ontario, developed the concept of evidence-based medicine (EBM). They suggested the traditional reliance on sporadic observations and the opinions of individual physicians should be replaced by systematised observation. They also made another decision. They decided that the best form of evidence or systemised observation was the use of the randomised controlled trial (RCT), and furthermore they decided that all other forms of evidence including observations of effects of treatment in single patients would be considered inferior to the use of the RCT. A ‘hierarchy of evidence’ was developed (see Table 1). Table 1 – A hierarchy of evidence

1++ 1+

2++

2+

3 4

High-quality meta-analyses, systematic reviews of RCTs, or RCTs with a very low risk of bias Well conducted meta-analyses, systematic reviews of RCTs, or RCTs with a low risk of bias Meta-analyses, systematic reviews of RCTs, or RCTs with a high risk of bias High-quality systematic reviews of case-control studies or cohort studies, or high-quality case-control or cohort studies with a very low risk of confounding, bias, or chance Well-conducted case-control or cohort studies with a low risk of confounding, bias, or chance Case-control or cohort studies with a high risk of confounding, bias, or chance Non-analytic studies (e.g. case report, case studies) Expert opinion

By implication this hierarchy implies that RCT-derived data is at the highest level with a lesser weight given to those based on observational studies. However, chair of NICE Sir Michael Rawlins in his outstanding Harveian oration of 20088 stated: ‘Giving such prominence to the results of RCTs, however, is unreasonable. Unquestionably, RCTs have had a profound influence on the practice of modern medicine.’ But he went on to say: ‘There are, though, other ways to establish the benefits of an intervention, where the effects are substantial. It is absurd, for example, to regard the evidence for the benefits of thyroxine in myxoedema, or N-acetylcysteine in paracetamol overdose, as any less secure than the evidence for the benefits of thrombolytic therapy in the treatment of MI. Yet a hierarchy such as that in Table 1 would position thrombolysis as Level 1+++, but relegate thyroxine for myxoedema and N-acetylcysteine for paracetamol poisoning to four levels lower down Level 2+ at best.’ Rawlins also pointed out the weakness of RCTs in relationship to the generalisation of results, that is whether an observation seen in one group of patients can apply to another group. This concept of the general applicability of RCTs is a contentious issue when considering the production of guidelines.

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The English statistician Austin Bradford Hill created the RCT in 1948 when he was asked to investigate the effectiveness of streptomycin in the treatment of tuberculosis.9 Up until then, doctors had little or no idea whether a treatment worked, especially when the magnitude of effect was small. Sir Bradford Hill stated in his Heberden oration of 196510: ‘Many controlled trials that are published fall lamentably short of what is really required of such an exercise. The authors do not appear to have asked themselves at the outset the deceptively simple but dominating question, “What precisely am I trying to find out?” ’ At the end of a trial we are not interested (from the scientific viewpoint) in saying that we have found these things to be good for a particular group of patients – for the particular Tom, Dick and Harry upon whom without thought we inflicted our drugs or our knives. Invariably, we wish to generalise from our results – that this treatment is of value in the treatment of a certain type of patient. Implicit, therefore, in the design of any trial must be a very careful definition of the type, or types, that we shall admit to it, and a very careful attempt to admit a true cross section of patients conforming to those types. Only thus can we safely generalise, and – equally important – only thus can we realise that outside this defined group we are extrapolating from our results. Often, we shall certainly and rightly wish to extrapolate; we ought to be in a position to do so knowingly and with a recognised, even if not a measurable, risk. ‘Yet too often … I am faced with trials on such an ill-defined, or undefined, potpourri of patients that I can but hopelessly speculate upon who got what and when and usually why? These poorly constructed trials not only teach us nothing but may even be dangerously misleading, particularly when their useless data are spuriously supported by all the latest statistical techniques and jargon. “Blinding with science” becomes almost a meiosis.’ As someone wrote to the Lancet: ‘How often have double blind led the blind into a cul-de-sac.’ And, again, Bradford Hill states: ‘Any belief that the controlled trial is the only way would mean not that the pendulum had swung too far but that it had come right off the hook.’ Sir Bradford Hill then went on to discuss what is known as biological variability: ‘Another problem lies in the biological variation of the human material with which we have to deal. Can we make a useful trial if that variability is very great?

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… and that we should first make a more intensive study of the condition to ensure a greater degree of homogeneity in the trial of patients.’ The assumption in much of the literature now is that RCTs are the most effective way to assess any treatment. Its use, or as we argue, its abuse, has led at times to the removal of useful therapeutic interventions which authorities consider to be ineffective. The use of RCTs in poorly defined populations of pain patients who are likely to have multiple pathophysiologies with variable psychosocial presentation (or a ‘potpourri of patients’) will more often than not lead to a general negative outcome for the treatment group and send us all into a therapeutic cul-de-sac. The use of the RCT fails to take into account the possibility of the individual responder to a treatment. In contrast, RCTs can be very helpful if the mechanism underlying symptom generation is effectively addressed by the proposed treatment, even if it is not clearly understood. After his appointment to HMS Salisbury as the navy surgeon in 1747, James Lind conducted his classic experiments on sailors who on board Salisbury frequently developed scurvy. On board HMS Salisbury on 20 May 1747, Lind took 12 patients with scurvy, and divided them into 6 groups of 2. He administered different treatments to each pair of sufferers. The six treatments were (1) cider, (2) elixir vitriol, (3) vinegar, (4) seawater, (5) a combination of oranges and lemons, and (6) a mixture of garlic, mustard seed and balsam of Peru. Six days later, Lind’s findings were clear: ‘The result of all my experiments was that oranges and lemons were the most effectual remedies for this distemper at sea.’ The results of this were published six years later, acknowledging the need to review the existing literature on scurvy systematically and to discard the weaker forms of evidence.11,12 Unfortunately, just because a treatment works in a tightly defined population doesn’t mean we can extrapolate this to all patient groups. Regrettably, many evidence-based guidelines do not remove the problem of extrapolation to different more varied populations or longer timeframes. Furthermore, scepticism about results may always be extended to areas not explicitly covered leading to the danger of therapeutic nihilism. RCTs of injections therapy in a poorly defined population of back pain sufferers are unlikely to lead to a positive result – highly unlikely. The danger is that in times of financial stringency, PCTs and NICE (and indeed the Audit Commission) may extrapolate negative results of poorly designed trials to withdraw services. Carr mentions in his article ‘When Bad Evidence Happens to Good Treatments’13: ‘If I am performing a systematic review of methods to control procedure-related pain in patients with cancer, what do I do if I cannot find a paper dealing with pain control for patients with peritoneal metastases undergoing endoscopic biopsy, but do find papers dealing with pain control for endoscopic abdominal surgery? Do I include these studies or not? What if I am trying to decide how best to control pain in children during a certain procedure, but only find RCTs

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enrolling adults? What if I can’t find a clear answer to the efficacy of a certain anticonvulsant for 1 form of neuropathic pain in a given population, but do find a study of a similar, nonidentical anticonvulsant?’ ‘Why Don’t Mercedes Benz Publish Randomized Trials?’14 was an article published recently in the medical journals. The authors have very elegantly described the main problems with RCTs, which are (1) simultaneous testing of only one or at most two improvements, when most surgical or medical interventions improve through the introduction of multiple small changes, introduced concurrently; (2) in some cases, the results might be redundant by the time they are published; (3) to assess the frequency of rare catastrophic adverse events they have to be too large to derive meaningful information; (4) difficult-to-treat populations such as the elderly or intellectually compromised, are often excluded, questioning their general applicability; (5) when there is lack of equipoise about the interventions proposed; and (6) if different procedures for the same condition are to be compared. The authors then went on to describe how quantitative observational methods can provide solutions to many of the problems inherent in RCTs.14 They are far more likely to identify the benefits or harms of an intervention in the general population, that is be generally applicable, and in particular, can identify rare adverse outcomes or determine the effectiveness of interventions designed to prevent rare events. In addition, observational methods, which often use large national data sets, are more appropriate when the outcome of interest is many years, which we believe is very applicable to chronic pain patients!

Conclusions In summary, the utility of RCTs has been significantly oversold, and if our final endpoint is ascertaining what is the best treatment for an individual patient then one needs to take into account the power of observational medicine.8,15 The hierarchy of evidence established by the McMaster group is illusory, as RCTs cannot predict the response of an individual to treatment.15 The practice of medicine should be evidence-based wherever possible but that this should include the evidence from observational studies as well as all the other types of evidence, including RCTs.14,16 With this in mind, this new Journal of Observational Pain Medicine is dedicated to the continued art of observation in pain, for it is through observation that the great pillars of our wisdom are raised up and fall down, it will take only one apple to fly upwards to question the universal theory of gravity, or one particle to travel faster than the speed of light to question the physics of Einstein or indeed one patient to respond dramatically to an unexpected treatment for us to re-examine our understanding of a disease process.

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References 1 Thomas, R. F. Georgics, Vol. I: Books I–II (Cambridge, 1988). 2 ‘Beginnings: The History of Higher Education in Bloomsbury and Westminster’. Institute of Education (retrieved 23 July 2009). 3 Richardson, J., Harrison, G., & Munglani, R. Pain news 2011:19–20. 4 Pither, C. Pain clinic is not a place for diagnosis. Pain news 2011:21. 5 Munglani, R. How do we make progress? Pain news 2011:33–35. 6 Teaching about Evolution and the Nature of Science (National Academy of Sciences, 1998), p. 27. 7 http://www.nobelprize.org/nobel_prizes/physics/laureates/2011/press.html 8 Rawlins, M. D. ‘De Testimonio: On the Evidence for Decisions about the use of Therapeutic Interventions’. The Harveian Oration 2008. London: Royal College of Physicians. 9 Doll, R. ‘Austin Bradford Hill’ Biographical memoirs of fellows of the Royal Society (1994) 40:128–126. 10 Ann. Rheum. Dis. (1966) 25, 107. 11 Manchikanti, L. et al. Evidence-based medicine, systematic reviews and guidelines in interventional pain medicine. Pain Physician 2009, 12:35–72. 12 Sutton, G. Putrid gums and ‘dead men’s cloaths’: James Lind aboard the Salisbury. J R Soc Med 2003, 96:605–608. 13 Carr, D. B. When bad evidence happens to good treatments. Reg Anesth Pain Med 2008, 33:229–240. 14 O’Brien, T., Viney, R., Doherty, A., & Thomas, K. Why don’t Mercedes Benz publish randomised trials? BJU Int February 2010, 105(3):293–295. 15 Worrall, J. Evidence: philosophy of science meets medicine. Journal of Evaluation in Clinical Practice (ISSN 1356-1294). 16 Benson, K. & Hartz, A. J. A Comparison of Observational Studies and Randomized, Controlled Trials. N Engl J Med 2000, 342:1878–1886.

Contacts/correspondence Dr Rajesh Munglani, 64 Cambridge Road, Impington, Cambridge CB24 9NU

Intellectual property & copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2012. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Revisiting physician-assisted suicide and euthanasia: understanding pain, suffering and compassion in a theological and societal context Revd Dr Mark Bratton

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The inaugural issue of this new publication goes to press in the context of one of the most harrowing medico-legal disputes of modern times. The death of Tony 2 Nicklinson, a fifty-eight year-old man, suffering with locked in syndrome was announced following an unsuccessful legal battle to change the UK’s ‘blanket ban’ on physician-assisted suicide and voluntary euthanasia. Mr Nicklinson, who apparently died of natural causes, developed his following a stroke in 2005 and was unable to carry out his own suicide. He sought legal protection for any doctor who deliberately killed him at his own request. Mr Nicklinson’s lawyers had asked the High Court to make a legal declaration that voluntary euthanasia was a defense to murder charge. They also invited the court to declare that in his particular circumstances he had an unqualified ‘human right’ to a ‘physician-assisted’ or ‘physical-activated’ death. He had hoped that the court would be persuaded by the style of reasoning in a very recent decision of the Canadian Supreme Court, which held that the assisted suicide prohibition enshrined in the Canadian Criminal Code could not be justified under the Canadian Charter of Rights and Freedoms and was therefore ‘unconstitutional’. The High Court, however, rejected these arguments and refused to find in favour of the claimant. It held that it had neither the competence, nor the constitutional authority, nor adequate control of the potential consequences of deciding in Mr. Nicklinson’s favour, to make the drastic legal changes Mr. Nicklinson was asking for. It was reluctant to create a precedent, which might affect many other cases, and which raised broader questions beyond the dire predicament Mr Nicklinson found himself in. The court judged that the wider issues of social policy the case raised were matters for Parliament, not the courts, to determine and noted that Parliament had recently, and repeatedly, rejected any move to liberalise existing laws on physicianassisted suicide and voluntary euthanasia. It also held that it was not well placed to supply the procedural safeguards and decision-making framework that legal changes in this area would require. In spite of the court’s decision to maintain the legal status quo in the context of assisted dying and death, the Nicklinson case is significant for a number of reasons.

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University of Warwick Nicklinson v Ministry of Justice [2012] EWHC 2381 (Admin)

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Firstly, it has provided a focus for broader debates within society about medical issues of ethical complexity, in particular physician-assisted suicide and euthanasia. Secondly, it is symptomatic of growing tendency to appeal to the court process to bring ‘closure’ to otherwise morally intractable medical dilemmas. The fact-based nature of the common law process promises sustained engagement with the predicament of a particular individual or individuals and a clear resolution of the case. Common law is ‘tough law’ offering litigants the possibility of a catharsis, which generalised legislative scrutiny cannot hope to achieve. While Parliamentarians are constrained to think about issues of assisted dying and assisted death in broad terms, the court process, whatever the outcome, offers litigants such as Mr Nicklinson a concrete decision and perhaps the consolation that knowing that nothing more could have been done on their part to address the particular situation by lawful means. Thirdly, it raises important constitutional questions about respective roles of the courts and the legislative process. Although judges have habitually factored in public policy considerations in their formulation of the common law, the boundary lines between the judicial and parliamentary remits are not clear and definite. Critics of the judicial conservatism expressed in the Nicklinson case have drawn attention to the common law extension of ‘rape’ to include ‘marital rape’. This legal development, they contend, is as momentous a reformulation of law as the creation of a new legal defense to murder would be and thus, on this logic, a suspect exercise of judicial activism. The Nicklinson case has aroused once again passionate discussion and argument on the subject of physical-assisted suicide and euthanasia. Proponents of assisted suicide and voluntary euthanasia have been tenacious in their attempts to keep the issue alive in the media and, if necessary in the courts. If they succeed in their attempts to liberalise the law in this area, then they will have qualified the traditional taboo against intentional killing in an important respect. Behaviour hitherto regarded as murderous, or otherwise criminal, will have become lawful, and, in some circumstances, perhaps even obligatory.

The meaning of voluntary euthanasia and assisted suicide Literally, euthanasia means ‘good death’, but, more technically, refers to any form of medical behaviour whereby the patient’s life is deliberately and directly brought to an end. Assisted suicide, in contrast, refers to a person dying by his own hand with assistance from another, whether a doctor or loved one. Currently, euthanasia would constitute murder attracting a mandatory life sentence. Assisted suicide is a statutory offence under section 2 of the Suicide Act which, upon conviction, attracts a sentence of up to 14-years imprisonment. Voluntary euthanasia and assisted suicide are unlawful in most countries. A small number of American States (e.g. Oregon) and European countries (e.g. the Netherlands) have passed more liberal laws.

Arguments for legal change Three principal arguments for legal change have been advanced in support of legal change in these areas: (i) the inconsistency argument; (ii) the motivation argument; (iii) the autonomy argument. Proponents of legal change usually use one, or a combination, of these arguments in support. 11

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These will be considered in turn. (i)

The inconsistency argument

Advances in medical science and technology have led many to experience increasingly the burdens associated with chronic and degenerative disease, accompanied by fears of dependence and indignity towards the end of life. In the modern medical context, the traditional distinction between ‘killing’ and ‘letting die’ seems to be too fluid and arguably leads to illogical and inhumane results. If doctors can intervene medically to prolong life, and to withdraw those interventions where they judge they are prolonging death, should they not also be permitted to intervene directly to end life where charity and compassion demand it. The moral philosopher, James Rachels, contends that the ‘doctrine that says that a baby may be allowed to dehydrate and wither, but may not be given an injection that would end its life without suffering, seems so patently cruel as to require not further refutation.’3 This distinction was illustrated in a legal case involving a 40-year old woman who 4 suffered a haemorrhage in the spinal column in her neck. This left her progressively paralysed and eventually tetraplegic and ventilator dependent. Although she was not terminally ill, the negligible prospect of recovery and the likelihood of a normal life span led to request the withdrawal of ventilation, which would lead to her death. In spite of her repeated requests, her treating clinicians refused to accede to her wishes, which they believed, were tantamount to murder and therefore incompatible with their perception of the integrity of the medical profession. The High Court eventually upheld her claim and justified its decision by classifying artificial ventilation as ‘medical treatment’, which as a person with legal capacity to decide she was entitled to refuse, and its withdrawal as a form of ‘letting die’, rather than a form of ‘killing’. (ii)

The motivation argument

Proponents of a more liberal law on voluntary euthanasia and assisted suicide have contended that an assisted death would be charitable where it would benefit the one who dies on grounds of compassion and mercy. Such behaviour would be morally right in these circumstances, they argue, because the underlying motive is honorable. English law, however, does not recognise a defence of ‘mercy killing’ to a murder charge, nor does it condone an assisted suicide, which is inspired by altruistic motives, unlike Switzerland, which criminalises only selfishly motivated assistance. The issue of motivation was brought to the fore in a number of recent highly publicised cases. Kay Gilderdale was convicted of the assisted suicide of her 32-yearold daughter, Lynne, receiving a 12-month conditional discharge.5 Her daughter had suffered for 17 years from an extremely severe and highly debilitating form of chronic fatigue syndrome. The case contrasts with that of Frances Inglis who received a 9year jail term for murdering her severely brain-damaged 22-year-old son with a large

3

Rachels, J (1975) Active and Passive Euthanasia. New England Journal of Medicine 292 (2): 257. 4 Re B (Adult: Refusal of Medical Treatment) [2002] 2 All England Reports 449 5 http://www.guardian.co.uk/uk/2010/jan/25/kay-gilderdale-case-expert-view [accessed 26th September, 2012]

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heroin overdose having failed to bring about his death in a previous attempt.6 The different results in the two cases may well have turned on the crucial factual distinction that Kay Gilderdale had responded to her daughter’s repeated insistence, while Diana Inglis’ son was incapable of deciding one way or the other. (iii)

The autonomy argument

The value of personal autonomy is paramount in modern medical ethics and law. A growing sense of personal autonomy has led many to contend that they have the right to choose the manner and time of their deaths, and to seek such in accordance with the principles by which they have lived. This philosophy was succinctly encapsulated by the author Terry Pratchett in his Dimbleby Lecture entitled “My Life, my death, 7 my choice.” Pratchett, who is suffering from a form of early onset Alzheimer’s evinced the wish to “shake hands with death”, comfortably seated in his garden chair, Thomas Tallis on the iPod, lubricated by whatever modern version of the ‘Brompton cocktail’ a helpful medic could supply. Proponents of legal change argue that if it is open to a person intentionally to hasten death by refusing otherwise life-sustaining treatment, then what logical justification is there for preserving a rule that prevents the same outcome by more direct means? There is a cruelty, they maintain, in denying people autonomy to decide the manner and timing of death at precisely the point when the value of self-control is at a premium. If people have discretion to live their lives largely as they wish, then shouldn’t this discretion be extended to decisions at the end of life? The inconsistency, motivation and autonomy arguments offer a powerful, cumulative, case for legal change, each forming the strand of a woven cord. Is the cord unbreakable? The case for legal change is matched by equally powerful arguments against. Arguments against legal change There are three principal arguments against legal change: (i) the problem of unqualified autonomy; (ii) the problem of eligibility; (iii) the argument from public policy. These will be considered in turn. (i)

The problem of unqualified autonomy

While the value of personal autonomy is of paramount importance in modern liberal society, freedom of choice is limited in the public interest in numerous ways. A person is not permitted to value their lives too cheaply – however willingly they do so. In the medical context, while a person with legal capacity has an unqualified right to refuse all medical treatment, they are not necessarily entitled to any treatment they demand, even if they are willing to pay for it. In the criminal law context, there are 6

http://www.dailymail.co.uk/news/article-1244731/Frances-Inglis-guilty-murder.html [accessed 26th September, 2012] st 7 Pratchett, T. (2010) Thirty Seventh Richard Dimbleby Lecture. My Life, My Death, My Choice. 1 February 2010. Broadcasting House, London.

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limits set upon the level of consensual violence we are at liberty to submit to. For example, a German court found Armin Meiwes guilty of murder for butchering a willing victim who had responded to an Internet advertisement seeking a suitable well-built male who would be prepared to submit to be slaughter, disemboweled and consumed (the unfortunate victim was one of 800 applicants). Autonomy is not an absolute value even in those jurisdictions where autonomy is prized. 8

(ii)

The problem of eligibility

The case for more liberal laws on voluntary euthanasia and assisted suicide is mainly argued to benefit those experiencing unbearable suffering whose distress lies beyond the reach of the best palliative medicine available and for whom being killed is the only sure way to kill the pain. Opponents of legal change have drawn attention to the difficulties of setting principled limits to the categories of person who should be allowed to receive an assisted death. If prevention of suffering is the key value then problems arise in defining the categories intolerable suffering. In 1994, the Dutch Supreme Court held that an otherwise physically healthy 50-year old woman was entitled to physician-assisted suicide because she was subject to unbearable psychological suffering caused by persistent grief following the deaths of her two sons.9 In 2000, a Dutch trial judge extended the categories of suffering to existential pain in the case of an elderly patient who felt his life was ‘empty and pointless’.10 Although the Dutch appeal court overturned this ruling holding that judges were not qualified to judge questions of ‘existential suffering’, the Royal Dutch Medical Society has, in a recent report, sought to include within the scope of the law, a non-medical condition called ‘suffering from life’. The expansion of the categories of eligibility has been implicit in a number of recent cases involving English nationals who sought an assisted death at the Dignitas clinic in Switzerland. The victims in these cases were not suffering from unbearable physical pain, but experiencing psychological and existential distress. For example, the young paralysed rugby player, Daniel James, though with the prospect of a normal life span, found the thought of continuing life in his physically damaged condition unbearable. The 85-year-old maestro Sir Edward Downes, though not suffering from an unbearable or terminal physical condition decided to die together with his terminally ill wife Joan.11 There is another, more fundamental, dimension to the problem of eligibility. If autonomy is the key value, then logic dictates that a person’s autonomous choice should be respected whether or not they exhibit a form of suffering which deserves to attract assistance to die. In this case, the categories of eligibility are in effect unlimited. (iii)

The argument from public policy

8

http://news.bbc.co.uk/1/hi/world/europe/3443803.stm [accessed 26th September 2012] Keown, J. ed. (1997) Euthanasia Examined: Ethical, Clinical and Legal Perspectives. Cambridge: Cambridge University Press: 279. 10 Ost, S & Mullock, A. (2011) Pushing the Boundaries of Lawful Assisted Dying in the Netherlands? Existential Suffering and Lay Assistance. European Journal of Health Law 18: 163-189 11 http://www.telegraph.co.uk/culture/music/music-news/5823704/Conductor-Sir-Edward-Downes-and-wife-end-livesat-Dignitas-clinic.html [Accessed 26th September, 2012] 9

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The problem which the problem of eligibility raises is, as Nigel Biggar has pointed out, that “if my life only has the worth that I accord it, then it has no objective value; and if it has no objective value, then why should anyone else care for it?” The libertarian logic of a purely private evaluation of a ‘good death’ ultimately undermines society’s solidarity with those who are ailing in adversity. Thus, the principle of personal autonomy is better construed as a public interest which needs to be weighed into the balance with other important social and cultural values such as solidarity and community cohesion. This is reflected in the provisions of the European Convention on Human Rights which has been incorporated into English law through the Human Rights Act 1998. Recent legal cases before the English courts and the European Court of Human Rights have identified a human right to autonomy at the heart of the ‘right to private life’ in Article 8 of the Convention. However, these decisions have also established that the human right to autonomy is not absolute, but may be overridden by other public policy considerations stipulated in Article 8(2). These include the protection of the rights and freedoms of others, especially the weak and vulnerable. It was mainly 12 13 on this ground that the legal cases of Dianne Pretty and Debbie Purdy fell short. Even though the courts have accepted in effect that there is a presumptive human right to an assisted death deriving from European law, European states can frame laws which qualify that right in order to protect the weakest and most vulnerable members of society. Thus, there is also a strong cumulative case for preserving the current legal position proscribing voluntary euthanasia and assisted suicide.

The Bishop of Coventry’s colloquium The articles included here were prepared for, and discussed at, a Colloquium on physician-assisted suicide and euthanasia held at the invitation of the Bishop of Coventry, the Right Reverend Christopher Cocksworth. The invitees included doctors, practicing barristers, philosophers, policy-makers and theologians representing a variety of different viewpoints. The aim of the 2-day gathering was to encourage frank discussion of the main issues with a view to promoting greater understanding of opposing positions, rather than to produce consensus. Papers were presented, questioned and commented upon with an emphasis upon seeking to understand why each individual held the views they did. At the end of the Colloquium, participants were asked to reflect on what they had shared and learnt, and invited to contribute to the set of essays published here. The articles, broadly speaking, cover five areas: medicine; public policy; law; philosophy and theology. Dr Rajesh Munglani sets out the foundational clinical case – study and reflection, pointedly asking what should happen when the medical profession is faced with complex cases of unbearable suffering. Carole Tallon considers public misconceptions about end of life care and their relationship to arguments for assisted suicide. In particular, she looks at the distortions of the meaning of ethical principles 12

R (Pretty) v DPP (HL(E)) [2002] 1 AC

13

R (Purdy) vDPP (HL(E)) [2010] 1AC

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and examines how commercial and ethical factors bear on the practice of medicine and their implications for the protection of the vulnerable. Brendan McCarthy outlines recent key recent events in the ongoing debate on assisted suicide and assesses some of the prominent arguments advanced. In particular, he examines some frequently misunderstood aspects of the public discussion. A suggested Christian approach to the subject is proposed that militates against any change in the law on assisted suicide in the UK. Paul Badham examines the religious arguments which have been employed in the assisted suicide debate including a discussion of Biblical law and the teaching of Jesus. It looks for consistency in arguments. He also contexts that it is strange that a religion that teaches that death is the gateway to a fuller life in God should so often speak as if death were the greatest of all evils. Nigel Biggar, in contrast, contends that, insofar as the problem to be solved is unbearable physical suffering, there is no need to change the law and legalise intentional medical killing to find a solution. The law as it now stands does nothing to prevent the expansion of the availability of palliative expertise. And it already permits palliative sedation, if that is necessary, and even if it should help to cause death. The expansion of palliative expertise and palliative sedation are alternative solutions to the problem that the legalisation of medical killing would solve. What is more, they are preferable alternatives. They are preferable because they avoid the risk of incorporating into law the principle of ‘arbitrary’ autonomy. And it is desirable to avoid this, lest such ‘arbitrary’ autonomy undermine the formation of citizens who are capable of caring for, and respecting, one another. In a nutshell: the legalisation of intentional medical killing threatens to give us a radically liberal society at the expense of a substantially humane one. We should avoid that if we can. And we can, because there is a more prudent alternative. In response, the Bishop of Coventry concludes with a powerful theological reflection centred on the figure of Simeon in the Gospels. Deeply immersed in the Christian tradition, the Bishop draws on a biblical story as source of wisdom and as a way of exploring the dimensions of the problems faced at the end of life without propounding a dogmatic solution. The story of Simeon is not an algorithm, which provides clear solutions to complex problems. Rather, it serves helpfully to draw the heart and mind to dimensions of the problem of assisted dying which a purely philosophical analysis makes difficult. Like a guest in the company of a good host, Simeon waits a ‘sense of permission’ to depart his earthly life, rather than making his excuses early or outstaying his welcome.

Intellectual property & Copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2012. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Reflections on euthanasia, pain and suffering Dr Rajesh Munglani FFPMRCA, Consultant in Pain Medicine

“The purpose of life is a life of purpose.” Robert Byrne “Life has meaning only if one barters it day by day for something other than itself.” Antoine de Saint-Exupery “Man raises himself towards God by the questions he asks him.” Night by Elie Wiesel

Introduction Despite the major advances in medicine and palliative care witnessed in the last century, many patients, even in affluent Western nations, still die in pain and distress. Thus begins a comprehensive text against the legalisation of euthanasia. A paradoxical start one might think. Yet it is argued that the rights, indeed the autonomy of individuals to deal with their own life as they themselves see fit has to be balanced against the effect of each individual’s action on society as a whole or on specific individuals within that society. Do we have the right as physicians, law makers and theologians to deliberately force individuals to continue to endure prolonged suffering by disallowing the right to voluntary assisted euthanasia (VAE)/physician-assisted suicide (PAS), for a possibly greater good of protecting the moral code of society or a presumed benefit of protecting other more vulnerable individuals in case the technique was then forced upon them? The historical links between euthanasia and the Nazi ideology cannot be ignored here. Thus the debate also has to face the question if VAE and PAS were legalised, could they be effectively controlled in limiting use to the gravely ill and those suffering unbearably, or would it eventually be practised on those who did not want it? Those Journal of Observational Pain Medicine – Volume 1, Number 1 (2012) ISSN 2047-0800


whose lives others have judged to be no longer worthwhile: known as the slippery slope argument. As doctors we generally accept (particularly now, with the current unparalleled budget deficit in the UK) the tempering of our aspiration to do the best and maximum possible for an individual patient because of limited resources, e.g. limitations of availability of drugs, medical time or even intensive-care beds: referred to as rationing. This rationing may lead to increased suffering for an individual patient, yet also leads to a more balanced distribution of healthcare resources and hence the possibility of relief of suffering for other patients. In this regard the General Medical Council (GMC) has very recently issued guidance on end-of-life decision making, Treatment and Care Towards the End of Life: Good Practice in Decision Making [1], with the presumption in favour of prolonging life, although goes on to mention that there is no obligation to prolong life at all costs. Treatment must benefit the patient (in Scotland) or be in the patient’s best interests (in the rest of the UK). Mention is made of taking into account the Human Rights Act. Notably it guides doctors in cases where patients refuse treatment and issues advice where lack of resources may affect what can be offered to patients. Such guidance is clearly very helpful but obviously does not take account of a patient who wishes to end life actively.1

The current situation means that, as doctors, we can only withdraw active treatment but cannot actively intentionally hasten death. Since we cannot possibly control all of the unpleasant symptoms all the time, in all patients, this leaves the possibility of having to allow persistent suffering in some patients which cannot be palliated. Should we not be debating the current situation, which forces some individuals to continue to suffer by not offering VAE/PAS? One of the arguments, as mentioned above, is that by not allowing euthanasia, even for very deserving cases, we are protecting in the future other vulnerable individuals from the possibility of suffering an enforced death? Perhaps enough legal and moral safeguards can be put in place to limit VAE/PAS to those deserving cases who are suffering unbearably and still protect other vulnerable groups? The question also needs to be asked why is VAE/PAS necessary at all? What is going wrong with current medical practice such that patient groups and indeed doctors are increasingly calling for the legalisation of VAE/PAS in the UK?

1 The BMA comment on the GMC guidance is as follows: ‘treatment and care towards the end of patients’ lives must start from a presumption in favour of prolonging life. The guidelines tell doctors that decisions concerning potentially life-prolonging treatment “must not be motivated by a desire to bring about … death”, and that clinicians must take all reasonable steps to prolong patients’ lives.’ But Treatment and Care Towards the End of Life also points out that there is no ‘absolute obligation to prolong life irrespective of the consequences for the patient and irrespective of the patient’s views’. The guidance aims to provide doctors with a path through the ethical and legal dilemmas they could face when treating dying patients. It contains decision-making models for patients with or without the capacity to make decisions, as well as advice on how to interpret advance refusals of treatment. It also advises doctors on how to deal with treatment decisions that might be complicated by a lack of resources and NHS funding restrictions on certain treatments. The regulator says: ‘If you have good reason to think that patient safety is being compromised by inadequate resources, and it is not within your power to put the matter right, you should [bring] the situation to the attention of the appropriate individual or organisation.’ BMA Medical Ethics Committee Chair, Tony Calland, welcomed the guidance. He said: ‘It is clear about the need to work with the patient or — when appropriate — their relatives or advocate, to ensure that they are treated fairly, with dignity and without prejudice. The guidance also addresses the difficult issue of the use of scarce NHS resources at critical moments in patients’ lives.’ (http://web2.bma.org.uk/nrezine.nsf/wp/RTHS-85MEKV?OpenDocument&C=22 and also http://www.gmcuk.org/guidance/news_consultation/7046.asp both accessed 25 May 2010).

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The debate also brings into sharp focus the nature and role of a doctor; is their role the single-minded pursuit of the disease/diagnosis/treatment process or a more holistic care of the patient? If medicine cannot cure the disease, then most doctors would surely agree that relief of suffering becomes the ultimate priority. Trudeau, a 19th-century physician, opened a TB (the ‘White Plague’) Sanatorium in upstate New York and promoted open-air treatment for the disease. TB in those days was a virtual death sentence. Trudeau became interested in the disease after his brother contracted it and, as a young doctor, he took over care, but then developed the disease himself. On this background Trudeau wrote: ‘to cure sometimes, to relieve often, to comfort and support always’. But if we cannot cure and cannot relieve the pain and unbearable suffering surely it then follows and leads to the following conclusion: ‘If we can’t kill the pain, we can instead kill the patient.’[2] Dame Cicely Saunders, founder of the hospice movement, stated the following: ‘(we) are almost always able to control pain in terminal cancer … very rarely do we have to make them continually asleep … but went on to agree there is much suffering amongst the dying in this country and also said it (euthanasia) is unnecessary and an admission of defeat’ [3]. One can ask: Is being asleep a life worth preserving? Is this really a good end? If we are not allowed to kill suffering patients in order to end their misery, we may offer to keep them anaesthetised for days or months (even if we know that this state is probably no different from being dead). Or is this the compromise we have to make to balance the suffering of the individual against allowing the legalisation of VAE/PAS with all the supposed horrors for society that may ensue?

A current patient of mine, Donald,2 has pancreatic cancer; his recent staging scans show no disease progression and his current life expectancy is at least 4–6 months, possibly longer. His classical pancreatic cancer-associated abdominal pain had been very successfully controlled using a coeliac plexus block, but a few weeks later he developed agonising uncontrollable rectal pain, the cause of which has not been elucidated. He can still walk, has the dignity of control of his bladder and bowel function and it continues to be a great joy for him to drive. All sorts of investigations and drugs have been tried to relieve him of his agonising rectal pain, which he once described as someone taking a pair of pliers to his anus and twisting it hard. Various temporary nerve blocks have had no significant effects, and even industrial doses of intravenous opioids, lignocaine and ketamine, have not touched the pain, but eventually the drugs anaesthetise him to a state of delirium and then 2

Donald has given permission for me to speak about his case and also to present a video of him at the conference of him speaking about his condition. He has also agreed to let us dedicate this chapter to him and people like him who continue to suffer.

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unconsciousness. Thus the only treatment for his pain is very heavy sedation to the point of unconsciousness or the offer of other treatment would be either to temporarily or permanently numb and probably paralyse him from the waist down, making him doubly incontinent and paralyse his lower limbs.

The loss of dignity that the latter would produce would, for the last few months of his life, be dreadful. I recently spoke to him about these latter options and he understandably would not even countenance them. He is unlikely to die for weeks or months. Is an advancement of death by euthanasia such a bad option for Donald when his quality of life is so poor?3 What is the role of the medical staff in such a situation? Is it preservation of life at all costs or relief of suffering as well? Isn’t that part of our job description? Badham has pointed out that all pain and suffering can be eliminated by terminal/permanent sedation that obliterates all awareness. However, he questions whether this state is morally distinguishable from euthanasia.4 He goes onto to say that it is euthanasia in all but name [4]. Badham raises the theological issue of the value of such lives overpowered by drugs. Perhaps many would agree that there is not much difference between being sedated to the point of total lack of awareness and euthanasia. However, what then is the value of life of a patient whose last few years are overpowered by multiple drugs, not anaesthetised as such but certainly over-sedated, suffering cognitive impairment and not in complete control of their faculties.5 Thus the final few years of many of my patients are spent suffering and in chronic pain. Badham, at the conference, also mentioned a possible reason for the surge in interest in euthanasia: that we are not only living longer but also our twilight years are plagued with illness. Medicine can help us to stay alive but increasingly we are not living well.

3

I have not brought up the subject of euthanasia with Donald, nor has he mentioned it. I am using his case, with his permission, to discuss quality in end-of-life situations. The Medical Protection Societies advise us not to discuss the subject of euthanasia with patients.

4

An interesting question was asked by Professor Biggar during the Bishop of Coventry’s Conference about awareness in such anaesthetised states – for example, do such people dream. As far as I am aware, fully anesthetised patients do not perceive the passage of time like those who have slept. However, much research, including my own, suggests that pain perception, learning and memory formation can occur in lightly anaesthetised and very possibly some deeply anaesthetised subjects. See Munglani, R., Andrade, J. et al., A measure of consciousness and memory during isoflurane administration: the coherent frequency. Br. J. Anaesth., 1993, 71(5), 633–41; Munglani, R. et al., Remembrance of times past: the significance of c-fos in pain; Br. J. Anaesth., 1996,76(1), 99–105 Munglani, R. and  Hunt, S.P., Molecular biology of pain, Br. J. Anaesth., 1996, 76(1), 1–4.

5 Some of my patients who are in chronic pain and on high-dose medication describe their life as living in ‘Shadows and Fog’ (the title of a Woody Allen film). They also may suffer a marked inability to form memories: they put things down and forget where. They will have a conversation and forget what they have just been told a few hours or days earlier, cf. Alzheimer’s patients. They have enough insight to find their state distressing. They have the choice of omitting their pain-relieving medication and recovering their mental functions but then their underlying pain also is experienced, as they put it, ‘in the raw’. Or instead they not only dull their pain and mental abilities but also their personalities with drugs. Thus quality of life measures in these patients taking such drugs tend to be poor. I will address this point again later.

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Although the number of years of illness at the end of life has probably not changed dramatically, the years of illness that we are likely to suffer are 10–15, depending on the definition of suffering. It may be that as we live longer, and become increasingly more fail mentally and physically (without any gross disability), the desire to continue to live drains away (see Figure 1). Figure 1. The change in life expectancy with time.

Life Expectancy  at  Birth,  Great  Britain  &  EU  

85 80   75  

Years

70 65   60   55   1981  

1984

1987

1990

1993

1996

1998

2000

2003

2006

Female LE   Female  HLE   Female  EU-­‐HLE   Female  EU-­‐HLE  (Simulated)  

There has been a gradual increase in life expectancy (LE) for both males and females; however healthy life expectancy (HLE) is 10 years less than overall LE, while European Union-defined HLE is 15 years less than LE, i.e. one can expect to spend the last 10–15 years of one’s life suffering with significant disease. Medicine has increased overall LE but the duration of illness at the end of one’s life has not changed: we just are older when we do suffer ill health. It may explain the phenomenon of being ‘tired of life’, which is being increasingly described (see later in this chapter) figures from the Office of National Statistics) [5].

In studies held within the Netherlands, being tired of life seems to be an increasingly common request for euthanasia. My own experience as a doctor working in a pain clinic is that we cannot palliate all patients’ suffering – both physical and mental – in their twilight years, and the presence of such symptoms seems to promote statements from patients that they are tired of life and mention ‘ending it all’ or ‘going to Switzerland’ and ‘I wouldn’t let my dog go on suffering like this’.

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But do we need a change in the law at all? Has not medicine enough tools at its disposal to pull out of active treatment when necessary and quietly finish off patients when everyone has had enough? Current law allows one to withdraw active treatment if the treatment is futile, and also to administer treatment to relieve suffering, even if it is foreseen that it will shorten life. One doctor stated it was quite easy: ‘every time I passed the end of the bed, I doubled the dose of morphine.’ What was his intention? To relieve distress? Yes of course initially, but then one would not automatically keep doubling the dose of morphine; if the pain was well controlled, the additional doses of morphine, I suspect, was to shorten life, accelerating the dying process, thus recognising the futility of further medical treatment. Are his actions legal under current law? Probably not, as the main intention was now to shorten life. How would such a doctor, reflecting on his actions, subsequently explain them? He would probably say that he felt the patients were distressed or still in pain and so he gave them more morphine.6 Are such actions commonplace? In my opinion, yes. Is morphine a good drug for the purpose? Not particularly, but it is less likely to be questioned in the courts7, 8 than say potassium chloride (which will stop the heart), or high dose thiopentone or propofol (which are powerful anaesthetic agents) that will stop the breathing and depress the cardiovascular centres. On a further note, one has to distinguish between moral and legal arguments [6]. VAE/PAS is variously legal and illegal in different countries around the world. Indeed in some countries it has been legal at some times and not others, or has been tolerated for decades prior to legalisation. One may argue that the moral argument for performing such an act needs to be discussed independently of any national law; indeed, if the practice of medicine changes or medical technology advances then adaptation of the law is required. Statements by politicians or civil servants that doctors should stay out of drafting the law, I believe, are ill conceived and will ignore 6

This is not an unreasonable clinical decision, although the lawyers may argue none of us can feel another’s pain. By its very definition, pain is what a patient says it is. We have no easily available objective measures of pain (although functional MRI shows some promise, it is not a bedside tool). Thus its assessment is very difficult. The assessment of existential suffering, as we shall see, is even more difficult and doctors have been shown to be particularly bad at assessing it.

7

At the time of writing, a 75-year-old GP, Dr Martin, who had been already acquitted by the courts of murdering three of his terminally ill patients, faced a charge from the GMC of ‘acting irresponsibly in giving potentially fatal doses of pain killing drugs (morphine) to 18 terminally ill patients between 1994 and 2004’. The GMC claims he had a ‘zeal and a belief in his rightness’ (BMJ, 2010, 340, 2487). The outcome of this GMC hearing is discussed later in this chapter. 8 Professor Karol Sikora, a cancer specialist, spoke in Dr Martin’s defense, Professor Sikora said ‘a treating clinician must make a judgement when faced with a suffering patient and it is difficult to make a retrospective judgement … I suspect when Dr Martin went round, he felt he had to do something there and then because of the severity of … symptoms.’ He said that that morphine is one of the oldest and best drugs for pain relief and felt doses injected by Dr Martin were reasonable for someone in severe pain and breathlessness. John Beggs QC put to Professor Sikora, ‘Seeing patients die painful deaths must put pressure on clinicians who might err on the side of preventing pain.’ Professor Sikora stated ‘I would certainly say that a doctor wants to do everything to prevent pain and went on to agree eventually that Dr Martin had given large doses) (http://www.thenorthernecho.co.uk/news/4992930). In another article, Dr Sikora recounts how he also relived the suffering of a child. ‘My consultant turned to me and said: “Sikora, I don't want to see this boy again. Don't let him suffer.” I understood. I doubled his dose of morphine, which I knew could suppress his respiration. The child died overnight, peacefully, with his family around him. That is what doctors used to do. We didn't call it assisted suicide or euthanasia. We called it “easing suffering”. Today, though, we are witnessing a concerted drive to formalise this process’ (http://www.dailymail.co.uk/debate/article-1248090).

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an incredibly useful source of information and experience.9 It was said by Oliver Wendell Holmes Jr, a high court Judge10 [7]. ‘that “hard cases” make bad laws’. And he goes on to say: ‘such cases … because of some accident of immediate overwhelming interest … appeal to the feelings and distorts the judgment’. Is the case of Donald, mentioned above, such a case that appeals to the feelings and distorts the judgment? And yet these hard cases are exactly what we have to deal with, and for which the law must account. Indeed, because the Law of England stands as it does on prohibiting euthanasia, the case of Donald becomes hard as it now appears. As said by AP Herbert, a one-time MP for Oxford University and law reformer

‘Bad laws make hard cases.’11[8] I suggest that Donald has become a hard case because of current (bad) law.

Definitions[9] Why do we need to define terms? Because it is clear in such an emotionally, socially, religiously and legally charged field how you define something will be incredibly important as to whether it will be accepted or not. My own view is that doctors in England already wittingly and unwittingly carry out passive euthanasia frequently and, indeed, active euthanasia less frequently, but within the confines of currently well-accepted medical practice. This means that we all have to understand what each other means when we use such words. The word ‘euthanasia’ is derived from the Greek meaning ‘a gentle and easy death’. It includes the shortening of life by doctors, and an intrinsic assumption that the patient would be better off dead. Glover defines it as ‘killing someone where, on account of his own distressing physical or mental state’, or ‘about to enter such a state’ [10], this is thought to be in his own interests. The House of Lords Select Committee on Medical Ethics in 1994 published on the subject of euthanasia and decided that it involved an intentional act, as opposed to death by omission (the latter 9

Mr Robert Preston, who as a civil servant guided the Lord Joffe bill though the Lords before its eventual defeat, and also at the conference, I believe is of this view. As doctors are at the forefront of dealing with such difficult cases, their input into making any law workable in practice is vital. This requirement for the input of the medical profession is shown in the Netherlands by the involvement of the Royal Dutch Medical Association (KNMG) which has helped shape law.

10 Oliver Wendell Holmes Jr (1841–1935), who served on the US Supreme Court. 11

A.P. Herbert, (1890–1971) was an English humourist, novelist, playwright and law reform activist. He served as a Member of Parliament for Oxford University for 15 years [6].

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otherwise known as passive euthanasia12). This latter difference between active and passive euthanasia is crucial to understanding the fine legal distinctions between what is considered current legally acceptable or unacceptable end-of-life medical practice. Euthanasia at the request of the patient is known as voluntary active euthanasia. However, the widest definition of euthanasia not only includes all acts that intentionally foreshorten life, but also includes acts whose primary intention is not to foreshorten life, e.g. give somebody a large dose of morphine while foreseeing that life shortening will likely occur as a result of such an act: known as the ‘double effect’. The House of Lords Select Committee in 1994 stated that the double effect of giving large doses of therapeutic drugs was not a ‘cloak’ for widespread euthanasia. Mention was made of assessing the doctor’s intention, evaluation of the pain and suffering, and comparison with usual medical practice [11]. This is all well and good legally, but in practice I suspect the motives are far more complex – many conversations I have had with doctors suggest that the double effect was matched by what I term the ‘double intention’. The motives of the doctor are both to relieve suffering and hasten death. This, I suggest, was a better description of the consultant doubling the dose of morphine as he passed the end of the bed and also the case of Dr Martin (see footnotes 7 and 8).

For completeness sake I mention that non-voluntary is without the consent of the patient, e.g. adults with, say, advanced dementia and babies. Furthermore, involuntary euthanasia is defined as against the wishes of a competent patient. This is the main fear of most of the objectors to euthanasia/PAS: that eventually there will be forced killing of those who society does not value. A parallel is always made with the German concentration camps during World War II, and many who have been haunted by spectre of those camps write forcefully against euthanasia, such as Gitta Sereny [12] and Victor Frankl [13]. Physician-assisted suicide is defined as making a means of suicide available to a patient with knowledge of the patient’s intention to kill him- or herself. The final act resulting in death is undertaken by the patient (for example, taking pills provided by the physician). Glover argues persuasively, that if the decision has been made that whether the pills are taken by the patients themselves (PAS) or popped in the mouth by the doctor when the patients cannot do it themselves (euthanasia) is academic. If one is allowed so should the other, although it could be argued that euthanasia does not allow for a last-minute change of mind [14]. This distinction of PAS versus VAE was highlighted by the case of Dr Kevorkian, who was a rather enigmatic retired pathologist in the US, otherwise known as ‘Dr Death’, who attached people to his suicide machine which injected them with lethal drugs when they operated it, and he escaped prosecution on many occasions. He only got into trouble when he filmed himself performing voluntary euthanasia by lethal injection. Keown also comments that there is negligible moral difference between PAS and VAE [15].

12

Passive euthanasia (PE): the termination of patients’ lives not by an act but by withholding or withdrawing medical treatment or tube feeding with an intent to kill; otherwise known as euthanasia by omission.

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The right to take ones own life Suicide is not illegal in the United Kingdom and has not been since the Act of 1961.13 Lawyers will point out that the decision to decriminalisation of suicide was to stop the subsequent prosecution of people after a failed suicide attempt. The 1961 Act was introduced because it was rightly felt that such people need medical help not prison. However, it is clear that, certainly in the public mind, there is now a fundamental right (or even a human right) to commit suicide. Consider a scenario where a person cannot commit suicide because he or she suffers from motor neurone disease or is quadriplegic and so asks the help of another to perform the act of suicide. Is that murder (as would be in any other context) or helping that individual in fulfilling his or her human right?14 One could argue that a safeguard could be that a compassionate relative is the most suitable to help you commit suicide if you are unable to do it yourself. Unfortunately, since one is most likely to be murdered by someone you know rather than a doctor [16] and there is always the possibility of a secondary gain of inheritance, means that discerning motives of the relatives and helpers as well as the state of mind of the vulnerable individual who is contemplating assisted suicide are absolutely vital. This suggests that the safest way would be for a group of doctors, who would legally not be able to benefit from such a death, to interview all concerned, including the family doctor and relatives, as well as psychologically assessing the person contemplating VAE/PAS.

13

The Suicide Act 1961 (9 & 10 Eliz.2 c.60) is an Act of the Parliament of the United Kingdom. It decriminalised the act of suicide so that those who failed in the attempt would no longer be prosecuted. The Suicide Act was, however, a significant piece of legislation for, while s1 treated the rule of law that suicide is a crime as ‘abrogated’, s2(1) stated: ‘A person who aids, abets, counsels or procures the suicide of another, or attempt by another to commit suicide shall be liable on conviction on indictment to imprisonment for a term not exceeding fourteen years.’ This created a new offence of 'complicity in suicide', but the effect is unparalleled in this branch of the law because there is no other instance in which an accessory can incur liability when the principal does not commit a criminal offence. The situation with a conspiracy to assist a suicide is likewise unique: if an individual incapable of committing suicide for him- or herself enlists the aid of an outside party in performing the act, that party may be charged with conspiracy. The wording of s1(1) Criminal Law Act 1977 provides that a conspiracy will come into being if, when everything has been done to realise the agreement, some conduct: (a) will necessarily amount to or involve the commission of any offence or offences by one or more of the parties to the agreement ... No offence will necessarily be committed by the suicide victim if the agreement is carried out, but the fact that it is legally impossible to commit the crime of suicide is irrelevant under the Criminal Attempts Act 1981 (http://en.wikipedia.org/wiki/Suicide_Act_1961).

14

The first human rights (Human Rights Act 1998)  challenge to s2(1) was mounted in 2001 under the  European Convention on Human Rights  in Pretty v Director of Public Prosecutions (2002) 1 AC 800 with the ECHR  rejecting the application in  Pretty v UK (2346/02) shortly before her death by natural causes. Diane Pretty was suffering from motor neurone disease  and was paralysed from the neck down, had little decipherable speech and was fed by a tube. She had only a few weeks to live, claimed to be frightened and distressed by the suffering and indignity, and wanted her husband to provide her with assistance in ending her life when she felt unable to bear it any longer, although she intended to perform the final act herself. Because giving this assistance would expose the husband to liability under s2(1), the DPP was asked to agree not to prosecute. When this agreement was refused, the case began. Article 2 of the Convention provides: 1. Everyone's right to life shall be protected by law. No-one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law. This direct challenge to the legislation sought to assert an individual's right of autonomy against  public policies protecting the sanctity of human life. Mrs Pretty's full capacity for informed, rational consent was not disputed by opposing counsel. In  Re B (Adult: Refusal of Medical Treatment)  (2002) 2 AER 449 the court had already decided that a patient could refuse treatment knowing that this would result in death. However, the court in this case drew a distinction between passively allowing death through omission and active assistance in suicide, as per  R v Brown (1993) 2 All ER 75  (the famous  Spanner case), which ruled that a person cannot lawfully consent to anything more than the infliction of minor injury. Thus, the standing adjudication in English common law is that, as dying is an inevitable consequence of life, the right to life under the Convention necessarily implies the right to have nature take its course (http://en.wikipedia.org/wiki/Suicide_Act_1961).

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Thus, in the current context, the recent DPP guidelines on whether someone might be prosecuted for assisting a suicide, in my opinion, still leave a vulnerable individual open to both exploitation by relatives and also the possibility of a bungled, amateurish suicide attempt. Yet under the current DPP guidelines a disinterested third-party doctor is more likely to be prosecuted 15 even if the doctor offered better objective assessment of all the possible alternatives including better palliative care symptom control and, if needed, a better performed, more painless death by euthanasia.

The problems with leaving the law as it currently stands is that the UK is currently exporting its most problematic cases to countries such as Switzerland which allow offering assisted suicide to foreigners [17]. This is causing some concern in Switzerland, which may eventually close its doors to the Germans and English who are the two largest groups of non-Swiss people who go to the Dignitas Clinics.16

Passive euthanasia and acts of omission in medical practice Acts of omission which may shorten life are generally also allowed if the medical treatment offered is futile in that it has no realistic prospect of restoring a patient to a previous acceptable state. 15

Mr Starmer said: ‘Following the instructions of the Law Lords in the case of Debbie Purdy, I am today clarifying those factors of public interest which I believe weigh for or against prosecuting someone for assisting another to take their own life. Assisting suicide has been a criminal offence for nearly fifty years and my interim policy does nothing to change that. There are also no guarantees against prosecution and it is my job to ensure that the most vulnerable people are protected while at the same time giving enough information to those people, like Ms Purdy, who want to be able to make informed decisions about what actions they may choose to take.’ The public interest factors in favour of prosecution, as identified in the interim policy, include that: 1) the victim was under 18 years of age; 2) the victim's capacity to reach an informed decision was adversely affected by a recognised mental illness or learning difficulty; 3) the victim did not have a clear, settled and informed wish to commit suicide, for example, the victim's history suggests that his or her wish to commit suicide was temporary or subject to change; 4) the victim did not indicate unequivocally to the suspect that he or she wished to commit suicide; 5) the victim did not ask personally on his or her own initiative for the assistance of the suspect. Mr Starmer’s guidelines continue: 7) the victim did not have a terminal illness; or a severe and incurable physical disability; or a severe degenerative physical condition from which there was no possibility of recovery; 8) the suspect was not wholly motivated by compassion, for example the suspect was motivated by the prospect that they or a person closely connected to them stood to gain in some way from the death of the victim; 9) the suspect persuaded, pressured or maliciously encouraged the victim to commit suicide, or exercised improper influence in the victim's decision to do so; and did not take reasonable steps to ensure that any other person did not do so. The public interest factors against a prosecution include that: 1) the victim had a clear, settled and informed wish to commit suicide; 2) the victim indicated unequivocally to the suspect that he or she wished to commit suicide; 3) the victim asked personally on his or her own initiative for the assistance of the suspect; 4) the victim had a terminal illness or a severe and incurable physical disability or a severe degenerative physical condition from which there was no possibility of recovery; 5) the suspect was wholly motivated by compassion; 6) the suspect was the spouse, partner or a close relative or a close personal friend of the victim, within the context of a long-term and supportive relationship; 7) the actions of the suspect, although sufficient to come within the definition of the offence, were of only minor assistance or influence, or the assistance which the suspect provided was as a consequence of their usual lawful employment. Mr Starmer continued: ‘As this policy states, assessing the public interest is not simply a matter of adding up the number of factors on each side and seeing which side of the scales has the greater number. Each case must be considered on its own facts and its own merits. Prosecutors must decide the importance of each public interest factor in the circumstances of each case and go on to make an overall assessment. "I also want to make it perfectly clear that this policy does not, in any way, permit euthanasia. The taking of life by another person is murder or manslaughter – which are among the most serious criminal offences’ (http://www.cps.gov.uk/news/press_releases/144_09/ accessed 23 May 2010). 16 Dignitas was founded in 1998 by Ludwig Minelli, a Swiss lawyer. Dignitas ensures that it acts as an entirely neutral party by proving that, aside from non-recurring fees, it has absolutely nothing whatsoever to gain from the deaths of its members. Dignitas had thus far assisted 840 people to die, 60% of them Germans and also approximately 100 British citizens. People considering suicide need to be assessed by a doctor. There are considerable criticisms of the Dignitas model, including a lack of transparency and also a disturbing report in allowing a healthy person to commit suicide when she forged a doctor’s letter stating that she had a terminal disease. (http://en.wikipedia.org/wiki/Dignitas.

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The following examples are all ones that I know have occurred in clinical practice. The first is a patient who has severe Alzheimer’s, who develops recurrent chest infections and is treated with antibiotics. At a particular stage the decision is made by the consultant not to give antibiotics as, even though the antibiotics will cure the current chest infection, they obviously will not treat the progressive Alzheimer’s. The patient dies within a few days. The second example is that of the collapse of a 95-year-old woman who had been treated all night by a junior medical registrar. In the early morning she suffered a respiratory and cardiovascular collapse. The cardiac arrest team was called, and the anaesthetic senior registrar was asked by the junior medical registrar to intubate her and take her to ITU for ventilation. The anaesthetic doctor refused as he felt further treatment would be a futile exercise in the long run, with a minimal chance of a good outcome. A vigorous discussion (rather than a vigorous resuscitation) took place, in which the ward staff and other members of the arrest team expressed their disquiet at the aggressive and, in the opinion of all (apart from the junior medical registrar), inappropriate futile medical treatment that had taken place so far. Resuscitation was then abandoned. Yet consider the scenario if that elderly lady had not been admitted to hospital in the first place, but kept at home by her GP, she would have probably died at home peacefully and, when required, been given morphine for breathlessness by her GP to limit any suffering. The increasing role of hospitals and hospices in the final stages of life mean that dying at home, surrounded by one’s family, supported by a GP, who has looked after probably three generations of that family, is less likely to occur now but there would have been no arguments about inappropriate over-treatment but instead the GP would probably have earned the gratitude of the relatives and the patient for a ‘good death’– dying well. As mentioned by Professor Sikora, because of changing circumstances we have now to formalise the process of how we treat people who are suffering and dying (see footnotes 7 and 8). The importance of having open discussion in such cases with the patient and all those involved came to ahead in the case of Dr Howard Martin, a retired GP in County Durham (mentioned earlier in this chapter). He was eventually struck off by the GMC [18] after giving excessively high doses of morphine to 18 dying patients. Dr Martin was found NOT to have acted negligently but had ‘violated the rights of the terminally ill’. He had already been cleared of murdering three of his patients 5 years ago by the criminal courts. But the GMC decided that his behaviour was ‘completely unacceptable’ because Dr Martin had an ‘autocratic attitude’, believing he was always right. He hastened the deaths of some of 18 patients, who probably had only days or hours to live, by administering large doses of strong painkilling drugs. Professor Brian Gomes da Costa of the GMC said that his decisions were made on the scantiest of evidence. For example, the GMC stated in one case that Dr Martin administered 200mg of diamorphine to a patient who was suffering from oesophageal cancer on the day before he died. He also wrongly told the family that his cancer had spread.

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Professor Gomes da Costa stated that there was no clinical indication that the patient was suffering any pain and also stated that his record-keeping, including reasons for giving treatments, was appalling. Interestingly, the GMC panel stated that there was a chance that this patient could have recovered from his oesophageal cancer. I find this intriguing; while not knowing the details of this specific case, the general 5-year survival rate of this type of cancer is very low at 5% [19], i.e. less than one in 20 patients lasts for 5 years. The radical surgery and possible chemo- and radiotherapy required to achieve this survival rate may be quite unpleasant. Although what Dr Martin did was unacceptable in that he used the guise of relieving suffering to administer doses of morphine-like drugs that would probably kill the patients, it would be useful to discuss here his decisionmaking process. As far as it has been reported, Dr Martin has not shown any remorse for what he did and, indeed, he said he only acted out of ‘Christian compassion’, and was merely trying to limit their suffering rather than ‘playing God’. He went on to say that he hastened the deaths of patients without their permission, he had also administered a final injection to his son, Paul, who at the age of 31 was dying from cancer.  Dr Martin also called into question the ‘soft’ option of confining the terminally ill to hospitals and hospices 17 rather than allowing them the ‘dignity’ of dying at home with their loved ones. He went on to say: ‘A vet would put a dog down, but under the current system a doctor is not allowed to take positive action to help a patient in a humane way … I don’t believe I’ve killed any patients. I believe I’ve made them comfortable in their hour of need. But I am deemed to be arrogant because I used my discretion. ‘They want to extrapolate that to say I’m choosing to kill people. It’s not like that. The patients are about to die and I want to make sure they are comfortable. How can a socalled caring society not understand that? How can I be reckless with someone who is about to die?’ [20]

Such acts of omissions can be justified under current law even though they are also foreseen to shorten life, so long as the primary intention is the recognition of the futility of further medical treatment. The law also allows for medical acts to relieve suffering even if they also shorten life (double effect approach). This approach is summed up by saying there is no moral obligation to administer or undergo a treatment which is not worthwhile and is summarised in the following verse: [21]

17

This statement is a grossly negative view of the role of hospices in particular. Medical staff are certainly willing to engage with patients in such difficult circumstances please see, for example, a spotlight issue within the British Medical Journal: Palliative care beyond cancer, BMJ, 2010, 341, 645–62. In particular the articles by Drs Seymour , French and Richardson, Dying matters: Lets talk about it, pp. 646–8; Dr Stephen Barclay and Dr Jane Maher, Having difficult conversations about the end of life, pp. 653–5; Drs Ellershaw Dewar and Murphy, Achieving a good death for all, pp. 656–8; Drs Grant Murray and Sheikh, Spiritual dimensions of dying in pluralist societies, pp. 659–62.

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‘that while one must not kill, One needst not strive Officiously to keep alive.’ (A.H. Clough, ‘The Latest Decalogue’) As mentioned above, I think that, in reality, the double intention of both relieving suffering and hastening death may be far more common in clinical practice than many would admit to. Consider, for example, the withdrawal of treatment in intensive care. Professor Singer, an intensive care medicine doctor, says patients die on ITU because doctors get bored of trying to make them better. Doctors may not stop ventilating them, but do stop adding oxygen and switch off the inotropes (powerful intravenous drugs) which maintain blood pressure and heart rate. Both these manoeuvres will starve the brain and vital organs of oxygenated blood. This in my opinion is to intentionally foresee a shortening of life. This is, as far as I am aware, accepted clinical practice. Winter and Cohen argue that about bout 70% of deaths in intensive care occur after withdrawal of treatment; they state that this is not euthanasia. The cause of death remains the underlying disease process, and treatment is withdrawn as it has become futile. However, the timing of withdrawal, the treatments withdrawn, and the manner of withdrawal may vary considerably, not only from country to country but also between intensive care units in the same country [22 ]. Should have brackets Keown makes the point that the follow-on question is whether one needs the consent of the patient for this approach – does one need the consent of a demented, elderly patient with a chest infection or a patient ventilated on ITU, both of whom have or are likely to have a poor quality of life – what is wrong with ending it intentionally [23]? He also goes on to say that if one is suffering dreadfully at the close of one’s life, and requests VAE, just how autonomous is that decision? Is one’s decision-making process warped by the pain [24]? I would reply that of course it is: a man who is being tortured will long for death. If one accepts that a marked degree of irreversible suffering is occurring, which can only be relieved by very heavy sedation so that awareness is lost, in such situations what is the point of not offering euthanasia?

A change in the case law: the intentional killing of a patient. The case of Bland v Airdale Trust 1993 Bland was crushed in the Hillsborough football stadium disaster in 1989 and was diagnosed with Persistent Vegetative Syndrome (PVS) with no prospect of recovering any quality of life (it was thought he could not feel, hear or see) and also no prospect of dying18 [25]. Suffering from PVS, He could do nothing for himself. Bland’s ‘life’ was being maintained by tube feeding.

18

It is mentioned in [22] that another Hillsborough victim, Andrew Devine, emerged from PVS after 5 years and learned to communicate via a buzzer. This and other similar cases raise concern about the diagnosis of PVS.

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The courts allowed withdrawal of the artificial feeding knowing that it would inevitably lead to his death and indeed the Law Lords agreed that the intention of stopping feeding was:

‘to bring about the death of Tony Bland’. He died a death by slow dehydration and starvation; a barbaric method in many people’s opinion. The Laws Lords, although agreeing that the intention of stopping artificial feeding was to bring about the death of Bland, nevertheless allowed it to go head because homicide/euthanasia normally requires a positive ‘act’ not an omission. Stopping artificial feeding was considered act of omission, thereby allowing the patient to die of his pre-existing condition. However, Lord Goff reiterated that active termination of life is still not permitted, no matter how great humanitarian desire to relieve suffering might be [26]. One may argue that the case of Bland established the principal that treatment may be withdrawn if the ‘life’ that the treatment maintains has no ‘quality of life’. In other words, this landmark judgment allowed the withdrawal of treatment to intentionally shorten life, which had not previously and explicitly been allowed. It also took into account a judgment of the quality of life of an individual. Bland had no quality of life, indeed one judge said: ‘he had no life at all but was a shell’. The alternative view was also put forward that he still had human rights, i.e. he could not be displayed as an item in a freak show or his body sexually exploited. Therefore there was much disquiet at this judgment among those who opposed euthanasia. The mode of dying allowed by the courts also deserves some comment. Since the view was taken that feeding was artificial, and as only withdrawal of treatment would be allowed to bring about death this meant in practice that death was brought about by slow starvation and dehydration: is this really acceptable? Unbearable thirst is an awful way to die.19 The Bland case is clearly discomforting for those who believe in the intrinsic value of human existence, i.e. a human life is worth something even if there is no quality to it. But rapidly the argument may be applied into a judgment about quality of life, for example a case of someone with Guilin Barre Syndrome (severe muscle weakness often brought on by a viral infection which can strike anyone, leaving some almost totally paralysed and in some cases dependant on a ventilator, via tracheostomy – a hole in the neck, yet the mental faculties are completely intact) [27], or a quadriplegic who is totally alert but paralysed from the neck down and is maintained on a ventilator, i.e. has artificial ventilation as opposed to artificial feeding.

This issue brings into focus a number of issues: That doctors have always made judgements of quality of life and will withdraw or withhold treatment If they believe that the patient’s quality of life is poor. The issue of 19

Although some have countered that much of the feeling of unbearable thirst can be countered by keeping the mouth moist.

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shortening life in once sense does not come into it. Judgements are made, for example, as to whether to offer, say, surgery to patients: life-saving vascular surgery may be offered to a 60-year-old but may not to an 85-year-old. If a paralysed person has full control of his or her mental faculties but is maintained on a ventilator, i.e. has the capacity to give consent, asks for the ventilator to be switched off – a withdrawal of treatment (possibly accompanied by a dose of sedative to avoid conscious suffering, n.b. the sedative dose wouldn’t be an active treatment to kill, as he or she had no capacity to breath), it was the withdrawal of the ventilation that did it, allowing him or her to die of the underlying condition, c.f. Bland Case, would that be PAS/euthanasia? Would we feel at ease with a doctor switching off the ventilator in such circumstances? However, the distinctions are very fine. If someone else asked (a greedy relative hoping for an inheritance) that would be considered murder. If a cleaner accidentally pulled the plug out that would be considered manslaughter. Since suicide is not illegal in this country. If a patient, by virtue of a physical disability, cannot commit suicide, should he or she have the right to ask for help to perform the task? The case of Tony Nicklinson illustrates this point. At the time of writing, a man who developed ‘locked-in syndrome’ after a stroke at the age of 56 has begun legal action, asking the director of public prosecutions to clarify the law on socalled mercy killing [28]. Mr Nicklinson, who is paralysed below the neck and unable to speak, can only communicate by blinking or nodding his head at letters on a board and is ‘fed up with life’ and does not wish to spend the next 20 years in this condition. He has stated, ‘I cannot scratch if I itch. I cannot pick my nose if it is blocked and I can only eat if I am fed like a baby – only I won't grow out of it, unlike a baby.’ He went on to say, ‘I have no privacy or dignity left. I am washed, dressed and put to bed by carers who are, after all, still strangers.’ Currently his only lawful means of ending his life is by starvation – refusing food and liquids. He is physically incapable of committing suicide due to his condition. His wife is prepared to inject him with a lethal dose of drugs, but this would leave her liable to be charged with murder. Legal proceedings have been issued on behalf of the family asking the DPP to clarify whether he would authorise proceedings against Mrs Nicklinson if she were to end her husband's life. It has been suggested the current murder law infringes Mr Nicklinson's rights to respect for his private life under article 8 of the European Convention on Human Rights. His wife Jane said that her husband had no quality of life at all and he had thought long and hard about his decision and it was his settled wish to die and went on to say:

‘He wants to be able to take his own life at a time that he chooses … He just wants the same rights as everyone else … I mean, you or I can go out and commit suicide. He can't. That right was taken away from him the day he had his stroke." Many would be sympathetic to the case of Mr Nicklinson in his predicament as described above. Should we discriminate against those who are already disadvantaged physical disability and prolong their suffering, when we would now accept the right of a physically able person to commit suicide? What about mental disability, should we discriminate against that, c.f. the case of Kerrie Woolerton below.

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The concept of quality of life The questions raised above lead into a reflection about the doctrine of the quality of life (QOL). There are actually two interrelated issues: Is the treatment worthwhile? Is the patient’s life worthwhile? It holds that the lives of certain patients fall below a quality threshold, whether because of disease, injury or disability. Keown describes three different approaches can be taken as regard life and QOL [29]: Vitalism –that life is an absolute good and must be preserved at all costs irrespective of quality. Quality driven – that life is not an absolute good but an instrumental good – a vehicle for worthwhile living. If worthwhile living is not achievable (e.g. a demented patient or a patient in a PVS, or indeed congenital mental handicap) then does their life count? Do they qualify as people? Shouldn’t scarce healthcare resources be better spent on someone else more worthwhile? Inviolability of life – a middle way perhaps? It states that it is not the duty of the doctor to preserve life until the last moment but to seek to restore someone to health and if that is not possible to relieve suffering. There is no duty to treat if treatment is disproportionate or futile. This approach distinguishes between worthwhile and worthless treatment as opposed to the quality driven approach which distinguishes between worthwhile and worthless lives.

Why has the present situation occurred? The medical profession can keep people alive but, as can be seen, QOL has not been delivered in the same way. It suggests that the increasing and indiscriminate use of medical technology has led to larger numbers of patients being kept alive, who in a previous multiple of decades or indeed in another country at the present time would not have been. Have we as doctors unwittingly become, by our very role of being healers, instruments of increased suffering near the end of life? Is the situation further exacerbated by the transfer of both end-of-life care and decision making out of the home environment into the hospital setting, so that greater official scrutiny and hence tighter regulation are possible, and so also contribute to an increasing amount of iatrogenic suffering? As mentioned previously, the Office of National Statistics data tell us that we have increased duration of our life and still face an extended period of ill health and suffering of 10–15 years before we are likely to die. What is suffering? Suffering, or pain, in a broad sense20 is an individual's basic affective experience of unpleasantness and aversion, associated with harm or threat of harm. Suffering may be qualified as physical or mental21. Has rising life expectancy and the use of medical technology increased suffering, particularly in slowly progressive disease? Patients with PVS, MND ALS, MS, severe Alzheimer’s and other related conditions present a difficult situation. Medical technology has advanced to the point where increasingly infirm individuals can be kept alive. Many wish to continue to be kept alive, but, in my experience of dealing with them, a majority will reach the point of wishing they were not. They submit to increasingly intrusive and aggressive medical care with increasing reluctance and then begin to express a wish that the misery of present state could be brought to an end. 20 21

http://en.wikipedia.org/wiki/Suffering - cite_note-0 http://en.wikipedia.org/wiki/Suffering - cite_note-2

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What is the role of the doctor/healer when he can no longer heal the body? As well as the severe rare neurological conditions mentioned above there is the question of chronic disease which affects increasingly large number of ageing patients, causing a diminishment in their minds and bodies. Medical advances and technology have prevented individuals from dying of childhood diseases: good food and education keep them alive until old age, medical technology replaces a few worn-out joints, but increasingly, with the passage of time, their frail bodies become racked with signs of degenerative disease, painful joints and spine, increasing heart and lung problems, and loss of intellectual function and increasing incontinence. Make no mistake, any acute assault to an elderly patient’s vital functions can be dealt with. Opioid treatment is used for the increasing prevalence of pain as one gets older, but unfortunately not generally associated with improvements in the QOL we hoped for in the long term. Other types of pain-relieving drugs produce cognitive dysfunction. In other societies and indeed in past times in this country, the patients suffering from heart attacks were tucked up in bed, and the doctors waited to see if they survived. Now we have CPR, clot-busting drugs, emergency angioplasties and so on. Survival of patients with the use of these technologies has meant that an increasingly aging population suffering the inevitable consequences of senescence of mind and body are going to increasingly tax our ethics, medicine and wallets.

Does the increasing ability of medicine to keep the body alive have now to be balanced by allowing people the choice of when to die? Perhaps before, disease did not give us this choice, we were grateful for every day of existence. Now that medical technology has tipped the favour in terms of extension of life (but not quality of life) do we have to redress the balance by offering an option of death? Of course it is easy to apply, in an indiscriminate fashion, medical treatment to every situation without thought. However, it is a failure of moral responsibility to take such a blinkered approach, and not to question the wisdom and appropriateness of treatment in any given situation. There is no justification in ventilating a 95-year-old dying patient; the body of such a patient will rot away on the end of the endotracheal tube. The role of healer is not to apply medical advances without question but to look carefully at the appropriateness of the intervention in relation to QOL. Doctors have always made judgements about QOL and the appropriateness of a particularly aggressive medical intervention. The question then naturally arises: not only when do we withdraw active treatment, but should we actively hasten death in some situations to avoid suffering?

What is the current law in the UK? Keown points out the law in the UK has never adopted vitalism, but goes onto say that the law has also not accepted quality of life approach, i.e. only those who have worthwhile lives have a right not to be killed. The inviolability principle has been the 33

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guiding principal. It has been considered murder to actively and intentionally hasten death no matter the age, medical condition or wishes of the patient, however compassionate the motive of the doctor. However there is no liability for an omission to preserve life, although it is murder to omit to discharge a duty to preserve life with an intent to kill, e.g. parents not feeding a child or a doctor not feeding a patient (although, e.g., see the case of Bland [30]). The primary duty of good medical practice will include preservation of life (with a strong influence of quality of life on the decision-making process as to the futility of treatment in particular) as this is standard practice. We may offer surgery or intensive care to a younger patient, while we may not to an elderly patient whose QOL is known to be diminished, cf. resuscitation of the old lady mentioned earlier. These decisions are being made on a daily basis, and so withdrawal of further futile treatment is an acceptable course of action. Hence, do not some of the same arguments apply to someone suffering with poor QOL, who may wish to shorten life by taking morphine and other drugs? A duty of a doctor not only includes preserving life if possible, but also, as importantly, the relief of suffering. Cassell [31] states in the opening of his book on the role of a doctor that: ‘The test of a system of medicine should be its adequacy in the face of suffering ….’ He goes on to say [32]: ‘Suffering is personal and medicine is a personal profession – one doctor and one patient, each incomplete with out each other.’ There are counter-arguments that if we allow PAS/VAE to occur then this will fundamentally change the nature of the doctor–patient relationship. In the words of words of Baroness Finlay: ‘this is a Rubicon we should not cross. If the law on intentional killing is altered to allow physician-assisted suicide/euthanasia, every clinician looking after sick patients will inevitably be involved at some time. Would you be willing to administer the lethal injection? If not, don’t expect others to.’ [33] Yet polls of doctors show that if they were suffering with poor quality life – not just terminally but in the last few years of their own life – they would want the ability to end it at a time and place of their choosing. This has been my experience and of others – learned from speaking with other doctors at dinner parties, when the conversation has been lubricated by a few glasses of wine [34]. To examine whether the double effect phenomena is an unconvincing clinical fudge or a vital ethical and legal principal (or indeed both) is a very important question. Douglas [35] states that there are two important distinctions:

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‘killing and letting die – an action aimed at some other outcome that causes death as a foreseen but unintended “side-effect”’. Many feel intuitively that these distinctions are morally significant, but that they cannot be drawn with perfect clarity – they do not have the kind of fundamental significance required to defend an absolute prohibition on killing. However, Douglas goes on to argue that the distinctions are nonetheless important. The distinctions between killing and letting die, and between intending and foreseeing do have moral relevance, especially for those involved in the care of the sick and dying. I agree that the distinction is important to discuss, but, what is even more important to openly debate: is relief of suffering by killing part of the job description of a doctor? Cassell states[36]: ‘we have gone from being carers and healers, to striving officiously to maintain life … The widespread perception, growing since the 1920s is … that what is lacking in 20th century medicine is an adequate consideration of the place of the person of the patient.’ If the person or the patient no longer wishes to be healed but still wishes his or her suffering to be relieved, how should we as doctors respond? Many of the treatments we provide are not wrong in themselves, but their indiscriminate application has meant that quality of life for the person has suffered. For example, in Denmark, which has the highest rate of opioids administration in long-term chronic non-malignant pain, studies reveal that long-term QOL is not improved generally by opioids administration [37, 38]. In reality this means that suffering is not palliated. The most common error is to prescribe strong opioids in the presence of severe depression, distress and complaints of pain, often on an unrecognised background of past history of significant psychological problems, including abuse of drugs and alcohol problems, in the vain hope that they will help generally. As one author put it: ‘opioids are being used to treat this undifferentiated state of mental and physical pain’. Doctors have for the last 100 years pursued disease rather than care for the sick. New treatments have been introduced which may superficially help disease and symptoms, but the treatment given does not address the underlying loss of personhood and the existential suffering that accompanies it.

The rise of autonomy and individualism: who takes up the right to die? [39] The question to ask if we allow easier access to euthanasia/PAS is then, would people:

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1) who don’t value their own life 2) whose private medical bills were rising (particularly in the USA ) 3) whose cost of caring is passed down to the children and 4) who are seeking to preserve some inheritance for the children by avoiding care home bills feel pressurised into asking for/accepting euthanasia? Is this a concern that has been seen in countries which allow euthanasia? A survey of the Oregon, Michigan, experience shows that those who take up the right to PAS tend to be white, well-off, educated and assertive of their rights. Individualism dictates that only patients themselves are in a position to judge the quality of their own life. Why should, for example, a religious view of the inviolability of life interfere with the individual rights of a person in an increasingly secular society? Particularly if, in exercising those rights, the rights of others are not interfered with? Is it not a personal choice about a deeply personal matter22? Professor Biggar gives a strong defence that allowing an individual the right to die would have profound moral consequences for society. Thus the right should not be given. He states the relaxation of the law prohibiting intentional killing would give us a radically libertarian society at the cost of a socially humane one. He states, in his profound book on the subject of euthanasia, that one can distinguish between 1) biographical human life, where a human being can play an active responsible part in this world, able to self express in some way, and 2) biological human life where the individual is so consumed by physical injury, defect or unrelievable physical suffering that they are unable to respond. In such situations he states it is permissible to cause death so long as one accepts it rather than intends it. He goes on to say that the consequences of a possible legal relaxation (for society) are grave and therefore he would keep the prohibition unconditional [40]. Let us apply this thought to Daniel James, the Nuneaton rugby club hooker, who felt that his body had become a ‘prison’ and lived in ‘fear and loathing’ of his daily life. He had attempted to kill himself several times since March 2007, when a scrum had collapsed on him and dislocated his neck vertebrae, trapping his spinal cord and rendering him immediately tetraplegic [41]. I asked the question then, if Professor Biggar23 was on duty at the airport when Daniel was on his way to Dignitas in Switzerland accompanied by his parents, what would he do? Would he stop Daniel and say ‘for the greater good of society I will stop you boarding the plane’.

22

One can also ask at this point as well as the many possible views of the patient, what about the personal views and values of the doctor?. Recent studies suggest doctors who described themselves as nonreligious were more likely than others to report having given continuous deep sedation until death, having taken decisions they expected or partly intended to end life and to support legislation on assisted dying. Seale. C The role of doctors' religious faith and ethnicity in taking ethically controversial decisions during end-of-life care doi: 10.1136/jme.2010.036194 see also http://www.bmj.com/content/341/bmj.c4732.full

23

One could object to me personalising it like this, but medicine is personal. As doctors, or as carers, we have to deal daily with the consequences of current laws.

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Daniel’s life for him consisted of unbearable (physical and mental) suffering; do any of us have the right to stop him committing suicide, albeit with help, when any of us more able-bodied individuals could do so without interference from the state? A further example which would test to the extreme the tension between compassion for the individual and the effect on society as a whole of allowing euthanasia would be that of Chantal Sebire.  In 2000, she was diagnosed with esthesioneuroblastoma, a rare form of cancer which burrowed through her sinuses, nasal cavities and eye socket, leaving her face severely disfigured. There followed a period of almost a decade in which she suffered the slow very painful disfigurement of her face with the cancer pushing the left eye, in particular, out of its socket, an extremely excruciating and disfiguring event (see Photos 1a and 1b).

                                                (a)  

                             

(b)  

Figure 1. Chantal Sebire; Photo 1a was taken before the facial cancer was diagnosed in 2000; Photo 1b was shortly before her death, probably by suicide, in 2008. Photographs produced with permission Getty Images.

She also lost her senses of sight, taste and smell while suffering severe pain. In February 2008 she appealed to the French President to be allowed to die through euthanasia, stating that ‘One would not allow an animal to go through what I have endured.’ On March 17 2008, she lost her case in a French court, with the magistrates noting that while French law does allow for the removal of life-support equipment for terminally ill patients, it does not allow a doctor to take action to end a patient's life. On March 19 2008, she was found dead in her home and blood tests revealed a toxic concentration of barbiturate[42].24 Again I would question a society and the impact on it of allowing someone to suffering as Madame Sebire was permitted to do. This dehumanises society and in particular the structures of law and medicine within it. Biggar states: ‘Those who propose to legalise PAS or VE invariably and sunnily assume that the social environment in which the new law would operate is fundamentally, predominantly and securely humane. Christians, who are disposed by belief and liturgical practice – and by hope – to pay attention to the darker side of human life, are more realistic’ [43]. My concern is the darker side of the status quo, of allowing the continued agony of fellow human beings around us whilst we may over wine and coffee discuss the merits of liberalisation of the law. Lack of compassion in current law and medicine is just as important to address as possible future dangers. 24

The situation is further complicated by the fact that she refused to take pain killers. However, having looked after very similar cases, the pain she suffered is usually resistant to most if not all analgesics. Often the only way to control the pain and distress is to give very heavy sedation.

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This discussion is complicated further when one considers the case of Kerrie Wooltorton. Doctors allowed Kerrie Wooltorton to kill herself because she had signed a ‘living will’ that meant they could have been prosecuted if they intervened to save her life. Miss Wooltorton, 26, who was suffering depression over her inability to have a child, drank poison at home and called an ambulance. However, she remained conscious and handed doctors a letter saying she wanted medical staff only to make her comfortable and not to try to save her life. Doctors said her wishes were ‘abundantly clear’ and although it was a ‘horrible thing’ there had been no alternative but to let her die. They feared they would be charged with assault if they treated her because they believed she understood what she was doing and was mentally capable of refusing treatment. It is thought to be the first time someone has used a living will to commit suicide [44]. Dr Luk Ho, a psychiatrist, raised concerns that it may lead to assisted suicide by the back door [45]. Although concerns were raised that her history of mental illness and previous suicide attempts raised issues over her mental ability to refuse treatment, Dr Vivienne Nathanson, Head of Ethics and Science at the British Medical Association, said that doctors must follow the patients’ wishes when they are competent to make decisions for themselves, i.e. only caveat would be a an assessment about an individual’s mental capacity to make such a profound judgement with permanent consequences. Looking at the broader picture, it seems that we may have an inconsistency in

the law, where if at one point you are considered physically and mentally able to commit suicide, no one can legally stop you, but if you are not physically able, you are impeded in this country from carrying out one’s own wishes.

Historical associations of euthanasia It is important to note that part of the objection to euthanasia has been its historical associations. Dowbiggin [46] gives a historical summary noting that in the early 1900s euthanasia was considered as a possible public health measure and associated with progressivism, an individual right and socially beneficial. The freedom to choose death coincided with the evolutionary duty to die, and associations with mercy killing, social reformation and utilitarian goals grew. Between 1920 and 1940, social support for euthanasia increased in American society, with growing media attention and frequent mercy-killing trials and this culminated in 1938 with the establishment of the Euthanasia Society of America. Euthanasia became linked with eugenics and sterilisation laws, birth control and the women’s movement. A broader agenda then followed against traditional ethics and pro-humanistic, pro-individual autonomy. It was claimed that euthanasia saves taxes and satisfies biologic requirements for social engineering. Voluntary and involuntary euthanasia were became connected, and it was exactly this connection that discredited the movement in the subsequent period (1940–60) when the Nazi atrocities became known. Dowbiggin goes on to say that, in the 1960s, the use of life-prolonging medical technology, terminal illness and relief of suffering became an issue. Euthanasia was 38

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the emblem under which the ‘right to die’ and ‘death with dignity’ movements became established, and promoted patient autonomy and individual rights. The right to refuse medical treatment was paramount, and little or no distinction was made between passive and active euthanasia. It was that said if ‘letting die’ was ethically permissible and in need of legalisation, the logical next step should be legalising active euthanasia in the advocacy of living wills; often combined with social justifications but interestingly also seemed to help promote the emergence of palliative care. The public is overwhelmingly on the side of both passive and active euthanasia. Substantial numbers of Americans agree that, although we have the means to extend and prolong physical life through the application of medical technology, it neither makes sense in all circumstances nor is it always morally correct to do so [47]. They go on to reflect on the fact that: In 2002, there were 885,000 individuals or their families who decided to refrain from further attempts at curative treatment in order to focus instead on comfort and palliation. It is estimated that more than 90% of the 500,000 deaths in critical care units are now preceded by withdrawal or withholding of life support treatments. Over 15,000 Americans die after discontinuation of dialysis, and in New England one in three end-stage renal disease deaths are preceded by a decision to stop renal replacement therapy. In 1998, the American Medical Association clarified its Code of Ethics by stating that: ‘physicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care. ‘This includes providing effective palliative treatment even though it may foreseeably hasten death.’ The interpretive statements of the Code for Nurses from the American Nurses Association similarly address nurses’ responsibility to provide comfort and alleviate pain and suffering. Most American healthcare professionals are confident that it is ethically and legally well-established for competent patients to forgo or terminate life-sustaining treatments (including food and hydration), in accordance with autonomy and individual liberty, as well as to receive pain and sedative medications under the principle of beneficence. These explicit imperatives to provide pain relief are important, as there are concerns that, in certain situations, pain relief is withheld so as not to expose the clinicians to charges of hastening death.25

25 See, for example, Johnston, I., Daily Telegraph, 5 July 2009, Dying man denied morphine, family claim. Thomas Milner was dying from leukaemia and all his family wanted was for his last moments to be relatively pain free. But instead they found the 76-year-old from Sheffield crying in pain at the city's Northern General Hospital after he was refused extra morphine.

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Family and other legally recognised surrogates may participate in these decisions on behalf of patients who lack decision-making capacity, or physicians may rely on advance directives to delineate healthcare preferences. The use of pain medications, sedatives and anxiolytics to relieve suffering may have respiratory–depressant side effects that hasten death in some patients, or they may contribute to other patients ceasing to eat or drink. Such actions are not considered euthanasia or murder if the primary intent of the clinician is not to hasten death but to relieve suffering, and the medical treatment is proportional and guided by standard medical practice (only administer as much sedative or opioid as needed to treat the symptoms). However, in 1997, the US Supreme Court found that there was no constitutional bar to a state’s criminalising assisted suicide; several justices expressed the belief that most states should not use criminal prosecutions of physicians to prevent dying patients from obtaining adequate pain relief – even if the pain medication also hastens death. In April 2004 the Parliamentary Assembly of the Council of Europe debated a report from its Social, Health and Family Affairs Committee (the Marty Report), which questioned the Council of Europe’s opposition to legalising euthanasia [48]. The Report asserted that nobody has the right to impose on the terminally ill and the dying the obligation to live out their life in unbearable suffering and anguish, where they themselves have persistently expressed the wish to end it. We now respect people’s choice to take their own life and avoid making value judgements about them, a development that could in no way be interpreted as a devaluation of human life. Palliative care does not take away unbearable pain and suffering in all cases and, in any event, the issue goes beyond the alleviation of pain: the degree of patients’ own suffering, including mental anguish and the loss of dignity that they feel, is something that only they can assess. Individuals suffering in the same situation may take different end-of-life decisions, but each human being’s choice is deserving of respect. Marty concludes: ‘As a lawyer and a legislator, I note that all over the world, doctors are ending the lives of patients, often in secrecy and with a sense of guilt. The law seems to want to ignore this fact of life, whereas it ought to have the courage to address it. Decriminalising euthanasia, rather than keeping the ban, might enable us to better supervise it and also prevent it.’ What is unbearable suffering? Is the degree of patients’ own suffering, including the mental anguish and loss of dignity that they feel, something that only they can assess [49]? In 2005, about 8,400 people in the Netherlands made an explicit request for euthanasia. Of these, about 2,400 requests were granted, and euthanasia was performed. The reasons for the request not being granted include:

His family claim there was no reason to withhold the drug and has made a series of complaints since his death in January 2006, but Sheffield Teaching Hospitals NHS Foundation Trust insist that they acted correctly, saying increasing the amount of methadone can cause an earlier death or ‘make patients sleepy and unable to talk with their family’ file://localhost/(http/::www.telegraph.co.uk:health:heal-our-hospitals:5741374:Dying-man-denied-morphinefamily-claim.html).

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The patient dies before euthanasia is performed (13%). The patient dies before the physician has made the final decision to grant or to refuse euthanasia (13%). The patient withdraws his or her request (13%). The physician refuses (12%). The Dutch Euthanasia Act (2002) describes six requirements for due care in the performance of euthanasia in order for a physician to avoid prosecution. Dutch law allows the Medical Review Board to suspend prosecution of doctors who performed euthanasia when each of the following conditions is fulfilled: The patient's suffering is unbearable with no prospect of improvement. The patient's request for euthanasia must be voluntary and persist over time (the request cannot be granted when under the influence of others, psychological illness or drugs). The patient must be fully aware of his/her condition, prospects and options. There must be consultation with at least one other independent doctor who needs to confirm the conditions mentioned above. The death must be carried out in a medically appropriate fashion by the doctor or patient, in which case the doctor must be present. The patient is at least 12 years old (patients between 12 and 16 years of age require the consent of their parents). Unbearable suffering (see condition 1) is not further defined in the act, but further comments by review committees and case law suggest that the concept of unbearable suffering is personal and not limited to physical suffering but should be able to be recognised by the physician. Cassell defined suffering as the state of severe distress associated with challenges that threaten the intactness of the person [50]. Thus, suffering is indeed individual and can only really be perceived by that individual. As well as physical conditions, this damage or loss may include any of the following:

person’s history

cultural, societal attachments and roles

perceived or desired future

spiritual life of the person.

The only way to know whether suffering is present is to ask the person. Physicians who accept the traditional mind–body dichotomy will invariably misunderstand the nature of suffering of the mind and will not regard it as truly real, and therefore be dismissive of it. Physicians usually define unbearable suffering more often as physical suffering. In one case, the physician thought that the suffering was not unbearable because the patient’s behaviour seemed incompatible with unbearable suffering – for instance, because the patient was still reading books.

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These findings suggest that physicians should take into account the different aspects of suffering as described in the literature and develop a more holistic framework for assessing the suffering of patients who ask for euthanasia. Indeed, in response to these concerns, standardised severity of suffering scores have now been developed [51]. A further study showed that due to advances in palliative care, Pain is now NOT the primary reason for request for euthanasia, it is usually 4th or 5th. In one study, 24 out of 28 palliative care patients spoke positively about euthanasia, although 19 out of 28 had some concerns [52]. The most common reasons are existential, a much less relievable type of suffering: profound deterioration, progressive loss of autonomy, unacceptable dependency, all leading to meaninglessness, even in spite of excellent palliative care. In a recent Canadian study, 6% of 379 palliative care cancer patients wanted euthanasia ‘now’. Modern dying with its emphasis on technology and striving to keep alive, usually within a hospital setting, has, for some, become unacceptable. This explains the recent report that 80% of Canadians and 75% of Quebec’s specialists were pro-euthanasia when appropriate, as wished by a near-death patient. One went so far as to say that euthanasia should be the ‘ultimate palliation’ [53, 54, 55]. A further study by Pearlman [56] concluded that patients engaged in PAS after a deliberative and thoughtful process. The factors that motivate PAS are the farreaching effects of illness, including: the quality of the dying experience; illnessrelated experiences; fatigue; functional losses; a loss of sense of self; and fears about the future. None of the patients were acutely depressed when planning PAS. The factors also identify challenges for quality palliative care: assessing patients holistically, conducting repeated assessments of patients’ concerns over time and tailoring care accordingly. The concerns of those who oppose euthanasia were heightened by the conclusions of a 3-year inquiry, commissioned by the Royal Dutch Medical Association, into patients who ask doctors for help to die even though they may not be ill but ‘suffering through living’. The report recommends caution, saying that doctors currently lack sufficient expertise, their roles remain unclear and recommends drawing up protocols by which to judge ‘suffering’ [57]. Interestingly, one study examining the concept of suffering stated that it does not necessarily increase with age, but it is strongly associated with increasing frailty – in particular in being bed-ridden [58]. In February 2010, a citizens' initiative, called Out of Free Will, further demanded that all Dutch people over the age of 70 who feel tired of life should have the right to professional help in ending it. The organisation [59] started collecting signatures in support of this proposed change in Dutch legislation. A number of prominent Dutch citizens supported the initiative, including former ministers, and artists, legal scholars and physicians. Under current Dutch law, euthanasia by doctors is only legal in cases of ‘hopeless and unbearable’ suffering. In practice this means that it is limited to those suffering from serious medical conditions and in considerable pain.

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It is important to recognise that clinical practice is not as easily definable as the law. In turn the law may not represent good ethics, nor easily encapsulate the various nuances of the clinical decision-making process. The current uncertainty leaves healthcare workers vulnerable to charges of accusations of murder and euthanasia in end-of-life care. This can completely destroy the careers of the doctors and nurses involved before they are exonerated [60].

Will legalising euthanasia lead to an increasing number of medical deaths and unfairly target the poor and vulnerable? A closer look at the Netherlands and Oregon Everyone’s life is protected by law. No-one shall be deprived of his or her life intentionally, save in the execution of a sentence of a court following his or her conviction of a crime for which this penalty is provided by the law (article 2 European Convention Human Rights) [61]. A concern of the anti-euthanasia lobby is that the fundamental legal right to life will be eroded by allowing euthanasia for the deserving few cases will eventually allow its application to a larger number of situations in the future. In 1984 a court in the Netherlands ruled that a doctor who performed PAS/VAE acted lawfully and with the subsequent approval of the Royal Dutch Medical Association and since that time thousands of patients have undergone PAS/VAS. In 2001 statutory force was given to the guidelines. There has been careful analysis of trends in PAS in the Netherlands. In one study [62] it was shown that the number of requests for euthanasia or physician-assisted suicide initially increased in the first decade, but from 1995 onwards they plateaued out at about 5,000 requests per year. It was suggested that the increase reflected the process of liberalisation in the early years, boosted by broad public support, lawsuits and the foundation of the Dutch Society for Voluntary Euthanasia, which has also encouraged the writing of living wills. The importance of pain as a factor for requesting euthanasia has decreased and been accompanied by the rise of deteriorating health being cited instead. There was a fear that increasing numbers of lives would end through medical intervention, without patient consent and without all palliative options being considered. Figure 2 shows the numbers of patients requesting euthanasia and their reasons for requesting it.

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No of requests per 10 000 patients

4 Trend 95% CI Raw scores 3

2

1

Proportion

0

(a)

0.75

Pain

Hopelessness

Deterioration

Dyspnoea

0.50

0.25

0 1977

1983

1989

1995

Year

2001

(b)

Figure 2. (a) The number of requests for euthanasia per 10,000 patients is given; (b) the reasons for the request for euthanasia are listed. The does seem to be a plateauing out of requests with time rather than an inexorable rise as some feared in this study . Pain as a reason for the request has dropped perhaps reflecting better pain relief and palliative care (data from [61]).

Particularly in the early years, anti-euthanasia proponents used the rise in the number of cases of patients electing euthanasia as proof of the slippery slope; however an alternative view may be taken as an indication of a shift towards more autonomy based end-of-life decisions [63].

In fact, having plateaued at approximately 2,000 or so deaths per year through euthanasia, recent reports from the Netherlands show a rise in cases of actual

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euthanasia in the last two years.26 Parallels with the 1967 Abortion Act have been raised which was to stop the spectre of back-street abortions and young girls turning up to accident and emergency departments dying from haemorrhage and septicaemia. In the event some have claimed that the legislation has led to abortion on demand, as there has been an inexorable rise in the number of abortions over the years according to official statistics [64].

Oregon physician-assisted dying [65, 66] In 1994 the state legislature of Oregon narrowly passed Measure 16, the Death with Dignity Act (DWDA) which legalised physician-assisted dying thus allowing, in principal, terminally ill patients to determine the timing of their own death. There was a subsequent attempt to repeal the act in 1997 as well as a challenge by the George W. Bush administration, the latter going to the Supreme Court of the United States in 2006. Since the law was passed in 1997, up until 2008, 401 patients have died under the terms of the Law. During 2008, 88 prescriptions for lethal medications were written under the provisions of the DWDA compared with 85 during 2007. Of these, 54 patients took medications, 22 died of their underlying disease and 12 were alive at the end of 2008. In addition, six patients with earlier prescriptions died from taking the medications, resulting in a total of 60 DWDA deaths during 2008. This corresponds with an estimated 19.4 DWDA deaths per 10,000 total deaths. Fifty-nine physicians wrote the 88 prescriptions (see Figure 3).

26

Dutch health authorities are reporting an increase in the number of cases of euthanasia. 2009 2,636 2008 2,331 2007 2,120 2006 1,923 2005 1,933 2004 1,886 2003 1,815 2002 1,882 2001 2,054 2000 2,123

 According to the daily NRC Handelsblad, 2,636 cases were registered by health authorities last year; an increase of 13% compared with 2009. Eighty-five of the patients that underwent euthanasia suffered from cancer. And 80% died at home. The numbers, as above, of reported cases of euthanasia and assisted suicide as defined by the 2002 Termination of Life on Request and Assisted Suicide (Review Procedures) Act (http://www.rnw.nl/english/bulletin/euthanasia-rise-netherlands).

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100

Number of  DWDA  Prescription  Recipients  and   Deaths,     by  Year,  Oregon,  1998-­‐2008  

90

Rx Recipients  

80

Deaths

70

Number

60 50   40   30   20   10   0   1998  

1999 2000   2001   2002   2003   2004   2005   2006  

2007 2008  

Year Figure 3. Number of DWDA prescription recipients and deaths, by year, Oregon, 1998–2008.

Battin et al. have shown that rates of assisted dying in Oregon and the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured (inapplicable in the Netherlands, where all are insured), people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk is people with AIDS. No extra legal cases were uncovered in Oregon. Among extra legal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups. The authors concluded that where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to be those who enjoyed comparative social, economic, educational, professional and other privileges [67]. Switzerland [68]: Legislation on euthanasia in Switzerland states that deadly drugs may be prescribed to a Swiss person or to a foreigner, where the recipient takes an active role in the drug administration. Under article 115 of the Swiss penal code (1937), which came into effect in 1942, assisting suicide is a crime if the motive is selfish. Physicians have no special status in assisting suicide, although they are most likely to have access to suitable drugs and ethical guidelines caution physicians against prescribing deadly drugs. In exceptional, and defined, cases, physicians may justifiably assist suicide. In the 1980s article 115 was used to set up organisations administering life-ending medicine. These have been widely used by foreigners (so-

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called suicide tourism) and 50% of the people helped to die by the organisation Dignitas have been Germans. A recent case report describes an even greater degree of assistance in suicide for a person with marked paralysis by showing how close the practice of Swiss right-to-die organisations can come to voluntary active euthanasia [69]. A 44-year-old woman was almost completely paralysed after a severe brainstem haemorrhage, leaving her completely dependent on the help of others. Four years after her stroke, the woman joined a right-to-die society with the wish to bring her life to an end. A doctor working with this organisation prescribed her a lethal dose of pentobarbital, and a special device enabled her to administer (after careful preparation) liquids through the PEG catheter despite her poorly coordinated movements. In the presence of her husband and her companion from the organisation, the woman administered herself the lethal substance by means of the device. On the basis of the fact that she herself had switched the device on, this death was classed as (assisted) suicide. Should a lack of will to live always be counted as a disease? The scales in most of us are usually tipped towards an intense desire to survive. Usually we do not question this, as so much of our lives is spent ‘achieving’. We obtain purpose by growing, learning, loving, partaking in creating children and contributing to society in our own unique way as an expression of our humanity. The Bible seems to suggest that most of that is achieved in three-score years and 10. If we have achieved all this, watched out children and grandchildren grow, feel at peace in what we have achieved, then, for some, as chronic disease disturbs our sense of well being, maybe the desire to live is no longer as great. There is no longer the automatic imperative for existence. Is the lack of will to live a disease? As I doctor, I recognise that a strong desire to wish for the end of one’s existence is likely to be a pathological state [70, 71]. In my experience, a lack of will to live or being tired of life (which we may label conveniently as depression) may be associated with both physical and mental distress and suffering. Is this depressive response, this lack of will to live or simply being tired of life, a normal response to what may be a chronic irreversible distressing medical situation or an abnormal state of mind to be treated with drugs and psychotherapy? Gilbert states [72]: ‘Common to most evolutionary theories of depression is the view that loss of control over aversive events and/or major resources/rewards exert downward pressure on positive affect. Social theories, however, suggest that it is loss of control over the social environment that is particularly depressogenic.’

Loss of control over our bodies as a potent factor for requests to hasten death [73] As doctors we are always taught to look for the symptoms and treat, if possible, the underlying disease. With chronic disease it may be not be possible or only partially achievable to deal with the underlying disease, and so one palliates, treats the symptoms – pain, breathlessness, fatigue, thirst, nausea, sleeplessness and anhedonia (the tiredness of life). In my specialty of pain medicine, I frequently see cases of excruciating pain, often unbearable, and unresponsive to morphine and other powerful analgesics. The severe pain drains the will to live. Often in such situations, when the suffering becomes unbearable, the analgesics and anxiolytics are given in larger and larger doses to relive pain and suffering, but, as a secondary effect, 47

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many doctors accept that, after a degree, they will shorten life: the double effect phenomenon, so beloved of Catholic theologians. If the drugs are given to a point that awareness of the person to the self and surroundings is lost. Then the label terminal sedation can be used. The shell is still alive but the essence of what is human is no longer functioning. In these cases, reversing the sedation to achieve restoration of consciousness and selfawareness is possible but accompanied by awareness of the extreme suffering that precipitated the intervention in the first place, cf. the case of Donald mentioned above. To all intents and purposes one may need to recognise that the value of maintaining the existence of that particular individual has passed. Doctors in such situations recognise the futility of further active medical treatment, such patients, heavily sedated, without intravenous fluids will die in a few days usually. Most doctors would not question the treatment protocols mentioned above in the end-of-life scenario as previously mentioned. Doctors, as well as being healers, have the duty of compassion – to comfort and relieve suffering. In certain scenarios the duty to relive suffering overrides the consideration for standard medical therapy. This is consistent with the spirit of their vocation. In fulfilling their vocation to relive suffering, they may well have to override their primary vocation of healing, when the latter is no longer achievable. The decision to limit or end suffering becomes more contentious when one extends the arguments into closely related scenarios: death is not imminent but the chronicity and severity of disease have destroyed the purpose of life for that individual. Suffering and purpose of life is an individual judgement. My reading of the literature suggests that there is no clear or direct correlation between any possible objective assessment of an individual’s state of mind or body and his or her request for euthanasia/PAS. The question then arises: what does correlate – ‘may be a purpose to life’? If one loses it, then I suspect the will to continue to exist will disappear. Is there a Christian/religious dimension to this debate? Many others in this volume will specifically address this dimension, and Badham argues that there is no specific Christian prohibition in giving up one’s life. What is going to happen in the future? The public pressure to allow euthanasia, I suspect, is going to be inexorable [74] (see Figure 5).

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Figure 5. Per cent approving euthanasia and suicide, General Social Survey: 1977–2002.

80%

70%

Euthanasia

60%

Suicide

50%

40%

30%

20% 1975  

1980

1985

1990

1995

2000

2005

Percent approving  euthanasia  and  suicide,    General  Social  Survey:  1977-­‐2002  

Even in Germany, where the memory of the Holocaust and enforced euthanasia is still vivid, a court recently ruled ‘that it is not a criminal offence to cut off the life support of a dying person if that person has given consent’ [75]. This ruling was given in the case of a women in her seventies who had previously expressed her wish not to be kept alive artificially. She fell into a coma in 2002 and had been in a vegetative state for 5 years when her daughter removed the feeding tube. The tube was reinserted by hospital staff but the patient died 2 weeks later. It was stated this ruling does not legalise active assisted suicide which is still illegal but allows passively assisting death through the removal of artificial life support if the patient had previously given clear consent. These type of rulings possibly encouraged by use of the human rights act, advanced directives, greater patient autonomy, and availability of euthanasia in other jurisdictions [76] will, I suspect, lead to the inevitable introduction of euthanasia in the United Kingdom. The increasingly liberal and indeed increasingly secular democratic basis of the UK and involvement of the EU suggests that the minority Christian or religious prohibitions against euthanasia will count for very little in an increasingly secular driven argument.

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The question I believe is not if euthanasia will be allowed, but when and under what controls will be put into place to help prevent abuse of any system? It is in this context that the restraining and moderating voices of the Christian viewpoint may play a vital role. Moreover, to recognise that the theological prohibitions of the taking of life are unlikely to be absolute and that love and compassion for a fellow human being, as he or she continues to journey from one life to whatever next is more important. Death for a Christian is not the end, it is ironic we are seen to strive so officiously to keep alive when perhaps the higher value of love and compassion and relief of suffering is more in our very nature as Christians, those of faith and as well as doctors. ‘To cure sometimes, to relieve often, to comfort always – this is our work. This is the first and great commandment. And the second is like unto it – Thou shalt treat thy patient as thou wouldst thyself be treated.’ Found in John Hopkins Postdoctoral Survival Handbook

References 1

[ ] http://www.gmc-uk.org/guidance/ethical_guidance/6858.asp 2 [ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, pp. 1–3. 3 [ ] The Lancet, 2 September 1961, quoted in Glover, J. Causing Death and Saving Lives. Penguin, 1990, p. 190. 4 [ ] Badham, P., Is there a Christian case for assisted dying? SPCK, 2009, p. 92. 5 [ ] http://www.statistics.gov.uk/cci/nugget.asp?id=168 6 [ ] Glover, J. Causing Death and Saving Lives. Penguin, 1990, p. 182. 7 [ ] http://www.phrases.org.uk/bulletin_board/53/messages/547.html/ 8 [ ] http://www.phrases.org.uk/bulletin_board/53/messages/547.html 9 [ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, pp. 9–17. 10 [ ] Glover, J., Causing Death and Saving Lives. Penguin, 1990, p. 182. 11 [ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, p. 21. 12 [ ] Gitta Sereny, Into that Darkness: From mercy killing to mass murder. 1974. /http://en.wikipedia.org/wiki/Gitta_Sereny 13 [ ] http://en.wikipedia.org/wiki/Viktor_Frankl 14 [ ] Glover, J., Causing Death and Saving Lives. Penguin, 1990, p. 184. 15 [ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, pp. 31–3. 16 [ ] http://www.aardvarc.org/dv/statistics.shtml 17 [ ] http://en.wikipedia.org/wiki/Suicide_tourism 18 [ ] http://www.bbc.co.uk/news/10355535#skip_feature_02 (accessed 22 July 2010). 19 [ ] http://en.wikipedia.org/wiki/Esophageal_cancer 20 [ ] http://www.telegraph.co.uk/health/7839369/Murder-case-GP-Dr-Howard-Martin-I-helped-patients-die.html (accessed 22 July 2010). 21 [ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, p. 43. 22 [ ] Winter, B. and Cohen, S. Withdrawal of treatment in ABC of intensive care. BMJ,1999, 319, 306–8. 23 [ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, p. 44. 24 [ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, p. 56.

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[ ]Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, p. 13. 26 [ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, p. 14. 27 [ ] http://en.wikipedia.org/wiki/Guillain–Barré_syndrome 28 [ ] http://www.bbc.co.uk/news/health-10689294 (accessed 19 July 2010). 29 [ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, pp. 46–7. 30 [ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, p. 58. 31 [ ] Cassell, E.J., The Nature of Suffering and the Goals of Medicine. Oxford University Press, 2004. 32 [ ] Cassell, E.J., The Nature of Suffering and the Goals of Medicine. Oxford University Press, 2004, p. 62. 33 [ ] Illora Finlay, ‘Assisted suicide’: Is this what we really want? British Journal of General Practice, 2005, 1, 55(518), 720–1. 34

[ ] Warnock, M. and Macdonald, E., Easeful Death. Is there a case for assisted dying?, Oxford University Press, 2008. 35 [ ] Charles Douglas, End-of-Life Decisions and Moral Psychology: Killing, Letting Die, Intention and Foresight. Bioethical Inquiry, 2009, 6, 337–47, doi: 10.1007/s11673-009-9173-2 36

[ ] Cassell, E.J., The Nature of Suffering and the Goals of Medicine. Oxford University Press, 2004. 37 [ ] Munglani, R., BMJ, 2010, 340, b5683. 38

[ ] Balousek, et al Prevalence of Interpersonal Abuse in Primary Care Patients Prescribed Opioids for Chronic Pain. 2007 Society of General Internal Medicine 2007; 22: 1268–1273. Sullivanet al Regular use of prescribed opioids: Association with common psychiatric disorders. Pain, 2005, 119, 95–103. Gärtner M. Schiltenwolf, Limited efficacy of opioids in chronic musculoskeletal pain. Analysis of Cause. Schmerz, 2004, 18: 506–14. 39

[ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, p. 52. 40 [ ] Biggar, N., Aiming to Kill, Darton Longman and Todd, 2004, pp. 166–71. 41 [ ] http://www.guardian.co.uk/uk/2008/oct/18/11 42 [ ] http://en.wikipedia.org/wiki/Chantal_Sébire 43 [ ] Nigel Biggar, A case against permitting intentional medical killing. Ethics in Brief, 2009, Autumn. 44

[ ] http://www.telegraph.co.uk/health/6248646/Suicide-woman-allowed-to-die-because-doctors-feared-saving-herwould-be-assault.html 45 [ ] http://www.telegraph.co.uk/health/healthnews/6262216/Living-wills-case-could-lead-to-assisted-suicide-bybackdoor.html 46

[ ] Ian Dowbiggin, A Merciful End: The euthanasia movement in modern America. 2003, New York, Oxford University Press, 2003. Henk A.M.J. ten Haven, Engl. J. Med., 349; 23, http://www.nejm.org 47 [ ] Cohen, L., Ganzini, L., Mitchell, C.R.N., Arons, S., Goy, E. and Cleary, J., Accusations of murder and euthanasia in end-of-life care. Journal of Palliative Medicine, 2005, 8(6), 1096–104 48 [ ] Keown, J., Mr Marty’s muddle: a superficial and selective case for euthanasia in Europe. J. Med. Ethics, 2006; 32, 29–33, doi: 10.1136/jme.2004.011148. 49

[ ] Pasman et al Concept of unbearable suffering in context of ungranted requests for euthanasia: qualitative interviews with patients and physicians. BMJ, 2009; 339: b4362, doi: 10.1136/bmj.b4362. 50

[ ] Cassell, E.J., The Nature of Suffering and the Goals of Medicine. Oxford University Press, 2004 51 [ ] Kees, D.M., Ruijs, Bregje D Onwuteaka-Philipsen, Gerrit van der Wal and Ad J.F.M. Kerkhof, Unbearability of suffering at the end of life: the development of anew measuring device, the SOS-V. BMC Palliative Care, 2009, 8(16), doi: 10.1186/1472-684X-8-16. 52 [ ] Jaklin A. Eliott and Ian N. Olver, Dying cancer patients talk about euthanasia. Social Science & Medicine, 2008, 67, 647–56. 53 [ ] Heyland, D.K., Dodek, P., Rocker, G. et al., What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ, 2006; 174: 627–33. 54 [ ] Wilson, K.G., Chochinov, H.M., McPherson, C.J. et al., Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychol, 2007; 26, 314–23. 55 [ ] Boisvert, M., http://www.cmaj.ca/cgi/eletters/181/8/463#220766 56

[ ] Robert A. Pearlman, Clarissa Hsu, Helene Starks, Anthony L. Back, Judith R. Gordon, Ashok J. Bharucha, Barbara A. Koenig and Margaret P. Battin, Motivations for physician-assisted suicide patient and family voices. J. Gen. Intern. Med., 2005, 20, 234–9. 57 [ ] News, BMJ, 2005, 330, 8 January, bmj.com, p.61. Also Royal Dutch Medical Association, http://www.knmg.nl 58 [ ] Matthew E. Dupre, Danan Gu, David F. Warner and Zeng Yi, Frailty and type of death among older adults in China: prospective cohort study. BMJ, 2009, 338, b1175, doi: 10.1136/bmj.b1175. 59

[ ] http://www.rnw.nl/english/article/right-die-elderly-back-centre-dutch-debate

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[ ] Cohen, L., Ganzini, L., Mitchell, C.R.N., Arons, S., Goy, E. and Cleary, J., Accusations of murder and euthanasia in end-of-life care. Journal of Palliative Medicine, 2005, 8(6), 5. 61

[ ] Keown, J., Euthanasia, Ethics and Public Policy. An argument against legalisation. Cambridge University Press, 2005, p. 41. 62 [ ] R.L. Marquet, A. Bartelds, G.J. Visser, P. Spreeuwenberg and L. Peters, Twenty five years of requests for euthanasia and physician-assisted suicide in Dutch general practice: trend analysis. BMJ, 2003, 327, 201–2. 63 [ ] Delden, J.M., Slippery slopes in flat countries – a response. Journal of Medical Ethics, 1999, 25, 22–4. 64 [ ] Statistical bulletin abortion statistics England and Wales 2008, http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_099714.pdf 65 [ ] http://en.wikipedia.org/wiki/Oregon_Suicide_Law 66

[ ] http://oregon.gov/DHS/ph/pas/index.shtml 67

[ ] Margaret P. Battin, Agnes van der Heide, Linda Ganzini, Gerrit van der Wal and Bregje D. Onwuteaka-Philipsen. Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in ‘vulnerable’ groups. J. Med. Ethics, 2007, 33, 591–7, doi: 10.1136/jme.2007.022335. 68 [ ] http://en.wikipedia.org/wiki/Euthanasia_in_Switzerland 69 [ ] G. Bosshard, D. Jermini, D. Eisenhart and W. Bär, Assisted suicide bordering on active euthanasia. Int. J. Legal Med., 2003, 117, 106–8, doi: 10.1007/s00414-002-0346-3. 70 [ ] http://en.wikipedia.org/wiki/Depression_(mood) 71 [ ] http://en.wikipedia.org/wiki/Dysthymia 72 [ ] Gilbert, P. Evolution and depression: issues and implications. Psychol. Med., 2006, 36(3), 287–97. 73

[ ]Gilbert, P. Evolution and depression: issues and implications. Psychol. Med., 2006, 36(3), 287–97. 74 [ ] O.D. Duncan and L.F. Parmelee, Trends in public approval of euthanasia and suicide in the US, 1947–2003. J. Med. Ethics, 2006, 32, 266–272, doi: 10.1136/jme.2004.011072. 75

[ ] http://www.bbc.co.uk/news/10414647 76 [ ] http://news.bbc.co.uk/1/hi/world/europe/7322520.stm

Contacts/ correspondence Dr Rajesh Munglani, 64 Cambridge Road, Impington, Cambridge CB 24 9NU rajesh@munglani.com

Intellectual Property & Copyright Statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2012. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Ethics and end of life care Carole Tallon

1

Introduction In this essay I describe medical ethics and their use, and I then describe what end of life care is, both in terms of government strategy and aspirations and the current practice. I then go on to discuss public misconceptions about end of life care and why they are misconceptions, as well as why I think these have fuelled the argument for physician assisted suicide. I also look at the distortions of the meaning of ethical principles and how these threaten to undermine provision of care and reduce our protection of the vulnerable in society.

What are medical ethics? All health care professionals are faced with moral problems inherent in the work of caring for other people. There is a growing awareness of the need to be able to identify these problems, commonly known as ethical dilemmas, so that ethical solutions can be reached. The code of medical ethics that dominates today derives from ancient as well as more recent traditions and was formulated by Beauchamp and Childress in 19791. It is directed towards action and gives paramount importance to decision making based on rational argument, just as clinical decisions are made. It is based around four principles, namely, autonomy, beneficence, non-maleficence and justice. Autonomy (in medical ethics) is defined as respect for the individual and their right and capacity to make decisions with regard to their own health and future. Beneficence demands that the healthcare professional considers the balancing of benefits of treatment against the risks and costs; the healthcare professional should act in a way that benefits the patient. Non-maleficence is the avoidance of causing harm. All treatment involves some harm, even if minimal, but the harm should not be disproportionate to the benefits of treatment. Justice is the distributing of benefits, risks and costs fairly: the notion that patients in similar positions should be treated in a similar manner. The very ethos and tradition of medicine means that medical professionals seek to maintain life and alleviate illness or, if that is impossible, to diminish suffering and promote quality of life. The patient has the same or similar objectives but may approach them differently or make decisions that do not coincide with those recommended by the doctor. It is in these conflicting situations that a set of medical ethical principles can help, because adequate knowledge properly applied to each unique clinical situation allows clinicians to identify ethical problems, analyse them and propose solutions. There are times of course when the four ethical principles can be in conflict with each other. For example, autonomy, where a patient is demanding the right to a very expensive drug, which is not publicly available, conflicts with the principle of justice, which dictates that the drug budget should be distributed more evenly so that no individual will get the expensive drug that cannot be afforded for all patients. There are times when the doctor’s values conflict with those of the patient and he or she may conscientiously object to a course of action, for example in the 1

Consultant in Palliative Medicine and Medical Director of the Myton Hospices, Coventry and Warwickshire Journal of Observational Pain Medicine – Volume 1, Number 1 (2012) ISSN 2047-0800


request for an abortion where the doctor objects to it on religious or moral grounds. In reality, in healthcare, we are faced with moral conflicts and are making value judgements almost continually, from answering patients’ questions, the way we interact with them, the clinical judgements we make, what we choose to disclose to them and to others and in the way we plan their future care. It is the responsibility of all healthcare professionals to understand ethical principles, to apply them at all times and to be reflective about how our own values influence the care of others.

What is end of life care? End of life care is a recently coined term, which encompasses the multitude of facets of the complex system of health and social care required for addressing the needs of the many people who die each year. End of life care is hard to define. On the one hand it is synonymous with palliative care, which aims to help people with incurable illnesses live as well as possible until they die. This is achieved by addressing the physical, social, spiritual and emotional problems that affect the individual and their family’s life because of the diagnosis. On the other hand if taken literally, it is only one small part of palliative care as it focuses on the end of that person’s life, the dying phase, which can be difficult to identify. In 2004 the Government published the End of Life Care Programme2 and followed this in 2008 with the End of Life Care Strategy3. Before these publications the term had rarely been used other than by those people working in the field of palliative care, and the last few months of people’s lives had not been subject to close attention by the departments of health and social services. The End of Life Care Strategy opens by explaining that half a million people die each year in England with two thirds of them being over 75 years old. These deaths usually occur after a period of chronic illness such as heart and lung failure as well as cancers, dementia and other degenerative conditions including frailty. Most deaths occur in hospital, a smaller number in care homes, people’s own homes and in hospices in contrast to one century ago when most people died of infectious disease, at a younger age and in their own homes. The Strategy says that we are not meeting the needs of these patients, neither in symptom management nor in addressing their practical wishes, especially their preferred place of death, in that whereas the majority die in hospital in fact the majority would wish to die at home. The document goes on to explain that better coordination of care provision, training and efficiencies could be introduced to improve the problems, and it describes how end of life care has until now had only a very low profile which must be changed because: “How we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and it is a litmus test for health and social care services”. It goes on to state that one of the aims of the Strategy is: “to raise the profile of end of life care” with a further lofty ambition being “to change attitudes to death and dying in society”. Whether or not the roll out of the Strategy is successful in its aims, the document makes it clear that this group of people, the dying, are and will continue to be a growing challenge, and not least to our financial resources.

How is end of life care provided in our society? End of life care is provided by a combination of specialist palliative care services, based largely in hospices reaching into the community, and hospitals, and the primary care team of GPs and community nurses (a combination of district nurses, community matrons and palliative care nurses who are also known as Macmillan 54

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nurses). The specialist services are made up of multidisciplinary teams of doctors, nurses, various therapists, chaplains, psychologists, social workers counsellors and volunteers. Most hospices are charitably funded and receive on average only a third of their income from the government4. End of life or palliative care is not a discrete entity to be “offered” to people. It is an approach to care or a philosophy of care. What end of life care entails is the identification of those people who are likely to die in the next six to twelve months and anticipating their particular physical, social and spiritual needs since this group of patients are most likely to have need of a great deal of health and social care input. Once the patient has been identified then the teams liaise with each other to ensure that anticipated needs are addressed and planned for, in three ways. First, the patient will have their concerns and issues explored and information given as needed and will be encouraged to make their wishes known so that, should they lose the capacity to do so, their best interests will be better known. This includes the completion of documents such as Advance Decisions to Refuse Treatment (ADRTs)5 and Preferred Priorities of Care plans (PPC)6 both of which are legally supported and provided for in the Mental Capacity Act 20057 . Secondly, the patients’ symptoms are managed by the teams liaising with each other with the patient being cared for in the place most appropriate to provide it and lastly, when the patient enters their actively dying phase which is distinct from merely being ill, (though sometimes difficult to recognise) they are given the type of care outlined in the care pathway for the dying patient (otherwise known as the Liverpool Care Pathway or LCP)8. This involves rationalising long-term medicines and other futile interventions, managing symptoms and spiritual concerns and promoting comfort within the constraints of the patient’s stated preferences. Aspects of all three elements take place throughout the period known as end of life, and the period may be much shorter or much longer than six months or one year.

Public misconceptions versus the reality of end of life issues Proponents of Physician Assisted Suicide (PAS) and euthanasia rely heavily for their arguments on the many misconceptions that abound relating to end of life care. The syllogism that hospices give people morphine, people die in hospices, therefore morphine kills people, underpins the myth that hospices are a respectable means of providing euthanasia. This fuels the argument that since doctors do it anyway then why not legalise it? Other misconceptions are that the Liverpool Care Pathway for the Dying Patient cause people to starve or die of thirst, and that patients with motor neurone disease (MND) are allowed choke to death or that terminally ill patients are sedated to death. It is true that if health care professionals are not adequately educated and trained in end of life care or sparsely available then the myths may be reality. If palliative care is not adequately resourced then people might suffer unnecessarily and the PAS and euthanasia arguments could gain momentum. The argument for good palliative care partly lies in dispelling these misconceptions.

Dispelling the myth that morphine hastens death The pharmacology of opiates and the way in which the human body handles them means that when a patient is in pain and opiates are carefully administered and the dose regularly adjusted to balance efficacy against unwanted effects, then the opiate does not cause the patient to die. There is no evidence that opiates when administered appropriately hasten a patient’s death, indeed some studies suggest that it may actually prolong survival, whilst improving quality of life. There is a great deal of evidence to suggest that pain relief in general is inadequate and that opiates 55

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are used too sparingly and it is felt that this is largely because of the misconception, held by members of the public as well as healthcare staff, that opiates hasten death. This myth is reinforced by the fact that doctors can be protected from prosecution for causing a patient’s death from opiates by the doctrine or principle of Double Effect (DE)9. The Association for Palliative Medicine (APM) believes that the principle of DE is unnecessary to justify the use of dosing regimens necessary to manage pain or distress in all but the most exceptional circumstances10.

Dispelling the misconception that hospices starve and dehydrate people who are dying When people enter their dying phase and are no longer able to eat or drink, whether at home or in the hospice, it is not usual practice to administer water or food via alternative means, such as an intravenous drip or a naso-gastric feeding tube. The family and friends sometimes perceive the dying patient to be dying of starvation or thirst. This is partly because of the symbolic nature of food and water, since to provide food and water is a significant human action that shows respect for the life and care of a fellow human being. It is connected to individual emotions, particularly love, and so if water and food is perceived as being withheld the family may feel that the patient is not being loved. People also believe that the patient will suffer from hunger and thirst and therefore have a bad death. Research supports the belief from practice that loss of appetite is almost universal when a patient is in the terminal stages of life11. Dehydration levels have no correlation with symptoms such as thirst. Most patients’ thirst can be alleviated by ice and sips. Research does not demonstrate that fluid administration leads to greater comfort12. Good palliative care of these patients involves assessing their symptoms and using the comfort measures described above and providing fluid by non-oral means in the rare situations in which it is clinically appropriate, as well as helping the patient and family to explore and understand and adapt to the care that is being offered.

Dispelling the misconception that MND patients die by choking Patients with MND live with a relatively short life expectancy and a condition that relentlessly deteriorates. The more rapidly progressive form of MND affects early the muscles of swallowing so that the patient can struggle to clear his or her airway of saliva or food and drink. This leads to a fear and a belief that he or she will choke to death. In practice people with MND die from a gradual failure of their respiratory muscles which can give a sensation of suffocation that can be alleviated by drugs which offset the sensation of breathlessness, a machine which blows air into the lungs for them, or a combination of both. It is extremely rare for MND patients to die of choking. If a patient has choking episodes indicating progression of the disease then alternative feeding mechanisms are recommended as an option as well as drugs which help to dry up excess saliva. Very short-acting medicines that relax and sedate can be given (up the nose, inside the cheek or into the feeding tube) which cause the patient to relax and sleep transiently. The airway then clears spontaneously and the patient awakes feeling more comfortable. Again, this type of palliative care requires careful assessment, sensitive discussions, weighing up the benefits versus the burdens of the different options, reassessment and ongoing support from a skilled workforce. Of course if the patient lives alone then this solution might not be the answer for alleviation of suffering as he or she might need a carer available at all times to administer the interventions and care. 56

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Realistic options for end of life include admission to a hospice or a care home and if the patient chooses not to do so then he or she will not be so well palliated but the palliative health carer will respect their decision and continue to support as well as possible.

Dispelling the misconception that agitated people are sedated to death Because of the ethos of medicine, doctors have a moral imperative to respond to the suffering of terminally ill patients, particularly when the suffering is extreme. The Association of Palliative Medicine’s Position Statement on end of life sedation13 states “Sedating drugs should only be used if the symptoms have not been relieved by more specific interventions. Rarely, severe refractory symptoms after exhaustive assessments and attempts to control by other less-sedating regimes sometimes require that physicians do sedate the patient to diminish awareness of their suffering. If medication is sedating in its effect the dose should be monitored in order to ensure that it is the minimum required to alleviate the patient’s symptoms. Medication used in this way does not shorten life. Sedation in palliative care is sedation while the patient dies and is not sedating the patient to death. Morphine and other opiates are painkillers and their pharmacology makes them unsuitable for use as sedatives.” If a patient is not assessed as actively dying and is requesting sedation, then after careful discussion and weighing up of the alternatives it is sometimes appropriate to negotiate intermittent sedation, for example for twenty four hours, after which the patient is woken up and is assessed again. Many patients find this an acceptable option and are glad to be awake again so that they can once more re-engage with their life and spend less time without mental capacity. Longer term palliative sedation of people not actively dying in all but the most extreme cases of suffering are morally and ethically questionable since without food and water the patient will die before they might otherwise have done. These are a few of the most important of the many misconceptions around end of life care. There is a great deal of significant evidence, and a consensus among palliative physicians, that they are indeed myths. It is noteworthy that over 95% of the members of the APM are against Physician Assisted suicide. Ethicists sometimes argue that palliative care is passive or non-active euthanasia and that we as physicians are just as morally responsible for letting someone die as we would be for killing them, since we withhold treatments. The arguments presented above should outline why this is not the case, since the patient dies of their disease and not because of the giving or withholding of treatment. Other misconceptions include those that surround the interpretation of the ethical principles themselves.

Distortion of the meaning of the ethical principles What Kant originally meant by autonomy was that the essence of a person, or their dignity, was their ability to be self-determining and self-governing, and that both are important. Kant described self-governing as being able to act in terms of laws valid for all persons. The decision to act according to laws is based on reason and our rational decision making ability is what makes us worthy of respect as it sets us apart from other living creatures which are at the mercy of their desires and instincts14 . Health care ethicists and the consumer choice agenda have distorted autonomy to mean only self-determining (ignoring the self-governing aspect) which has latterly become the ability to choose whatever one wants, so that “respect for autonomy“ has become doing what the patient wants. Individual choice therefore conflicts with the 57

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justice principle and with the autonomy of other individuals. Patients encouraged by this perception of being able to demand what they want confuse their rights to refuse treatment (self-determination) with being able to demand whatever they want. Patients’ relatives frequently confuse the concept of patient autonomy with conferring rights upon themselves. In my experience as a palliative physician it is the relatives who most frequently express a wish for euthanasia of their loved one rather than the patient asking for it. This is generally because the relative cannot bear to witness suffering, and so to end his or her own suffering asks for the death of the patient. The risk in following this to its conclusion is that we would be acting in the best interests of the relatives, so undermining the principle of autonomy and or justice. Patients’ relatives have been shown in research not to be good at predicting a patient’s wishes15 and so the vulnerable might not be protected in a society that did not recognize that it might not be the patient’s needs that are being weighed.

Summary Doctors and other health care professionals should act ethically when providing care. Ethical principles can help to guide the judgements that need to be made and should be intrinsically linked to the application of clinical skills and knowledge, which are used for delivering what is in the best interests of the patient. Doctors should uphold the tradition of medicine with its aims to maintain life and diminish suffering while also maintaining professionalism, which demands compassion, altruism, integrity and working in partnership. Resisting the consumer choice approach will help to ensure that the essence of medicine is not undermined so that all patients will be confident that motivation of the medical professional is driven by care and not consumerist concepts. Good palliative care delivered by a variety of caregivers means that people can have comfort and maintain dignity in their dying and their death. If we fail to invest in good palliative care then this fuels the argument for killing people who are suffering. The only way to protect the vulnerable is to care for them, not to kill them.

References 1

Beauchamp TL, Childress JF. (2001) Principles of biomedical ethics. 5th ed. New York City, NY: Oxford University Press 2 UK. National End of life care programme (2004) http://www.endoflifecareforadults.nhs.uk [accessed 02/11/2011] 3 UK. End of life care strategy: promoting high quality care for all. (2008) http://www.endoflifecare.nhs.uk/eolc/files/DH-EoLC_Strategy_promoting_high_quality_Jul2008.pdf. [accessed 02/11/2011] 4 Help the Hospices UK (n.d.) Facts and Figures. Available from: http://www.helpthehospices.org.uk/about-hospicecare/facts-figures/ [accessed 02/02/2012] 5 Advance Decision to Refuse Treatment (n.d.) ADRT tool. Available from: http://www.Adrtnhs.co.uk [accessed 12/09/2011] 6 UK. National End of Life Care Programme (2004) Preferred Priorities of Care Tool. Available from: http://www.endoflifecareforadults.nhs.uk/tools/core-tools/preferredprioritiesforcare [accessed 02/02/2011] 7 UK. Directgov.(n.d.) Mental Capacity Act 2005. Available from: http://webarchive.nationalarchives.gov.uk/+/www.direct.gov.uk/en/disabledpeople/healthandsupport/yourrightsinhealt h/dg_10016888 [accessed 12/09/2011] 8 Marie Curie Palliative Care Institute, Liverpool (n.d.) Liverpool Care Pathway for the Dying Patient. Available from: http://www.mcpcil.org.uk/liverpool-care-pathway/ [accessed 02/02/2011] 9 Joseph M. Boyle, Jr. Toward Understanding the Principle of Double Effect Ethics.Vol. 90, No. 4 (Jul., 1980), pp. 527-538 10 The Association for Palliative Medicine of Great Britain and Ireland (2009) Position Statement on Double Effect. Available from: http://www.apmonline.org/documents/128499915346380.pdf [accessed 09/10/2011] 11 McCann, R.M., Hall, W.J and Groth-Juncker, A. (1994) Comfort care for terminally ill patients: The appropriate use of nutrition and hydration. JAMA 272 : 1263-1266

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12

Ellershaw, J.E., Sutcliffe, J., and Saunders, C.M. (1995). Dehydration and the dying patient. Journal of pain and symptom management ,10,192-7 13 The Association for Palliative Medicine of Great Britain and Ireland (2009). Position Statement on Using sedating medication at the end of life. Available from: http://www.apmonline.org/documents/128499917951744.pdf [accessed 10/10/2011] 14 Kant, I.[1785] (1948).Groundwork of the metaphysics of morals.Hutchinson’s University Library, London pp. 100108 In: Randall, F., and Downie, R.S. (2010) End of Life Choices: Consensus and Controversy, Oxford University Press,UK 15 Zweibel, N.R. and Cassel, C.K., (1989).Treatment choices at the end of life: a comparison of decisions by older patients and their physician-selected proxies. Gerontologist; 29:615-21

Intellectual property & Copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2012. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Why we still need a change in the law on assisted dying Paul Badham

1

The Guidelines recently issued by the Director of Public Prosecutions in relation to assisted dying make clear that it would not be in the public interest to prosecute in cases where the dying person had a “voluntary, clear, settled and informed decision to commit suicide” and where the person who lent the dying person assistance “was wholly motivated by compassion” in giving help.1 This is an important clarification of the existing law, but it also makes clear why the law needs to be changed if the wishes of those who want an assisted death are to be safely met. This is because as long as assisting a dying person remains a criminal offence, any medical doctor, nurse or health care professional, however much they might also be motivated by compassion, would be likely to face prosecution if they assisted someone to die. The same would also be true for anyone who sought to set up a British equivalent to the Swiss Dignitas organization. This means that people suffering unbearably in terminal illness and longing for an easier death must still be taken to Switzerland if they are to get professional help to end their lives. The arguments most often used against changing the law are based on the assumption that if assisted dying were to be legalised this would have serious consequences for the medical care of vulnerable elderly people. It would destroy the trust between doctor and patient and it would harm the prospects of ensuring wider availability of good palliative care in Britain. But are these predicted consequences at all likely? The best way to find out is to look at the evidence from those countries where assisted dying or voluntary euthanasia are permitted. Switzerland is the best example because it has the most liberal law on assisted dying and yet has arguably the best health care system in the world providing excellent care and universal coverage. The Swiss have 18.3 hospital beds per 1000 inhabitants, which is the highest ratio of any country in the world and compares with 4.1 in Britain.2 Consequently sick people in Switzerland are able to have longer hospital stays than in any other country.3 Such a level of health care is of course expensive and Switzerland does spend more than any country other than the USA. In 2007 per capita expenditure on health in Switzerland was 4,011 US dollars compared with 2,560 US dollars in Britain.4 In other words the Swiss spend 57% more on health care that we do.

1

Professor of Theology at Lampeter, a Patron of Dignity in Dying and author of Is there a Christian Case for Assisted Dying?

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One consequence of this is that the Swiss live two and a half years longer than we do. According to the World Health Organization, in 2009 Swiss life expectancy was 81.8 years while British life expectancy was 79.2 years.5 This level of life expectancy shows that vulnerable and frail Swiss people do not feel under pressure to ask for assistance to die merely because their laws allow this. Their cancer survival rates also demonstrate this. 53.6 % of Swiss men survive cancer for more than five years, but only 44.3% of British men do. 6 What this brief comparison between Britain and Switzerland shows is that there is no evidence that allowing assisting dying has a deleterious affect on health care Instead the evidence shows that a country which shows compassion to people who want assistance to die will be more, rather than less, likely to show equal compassion to others who want assistance to continue to live. Certainly the hundred or so Britons who have travelled to the Dignitas Clinic in Zurich for an assisted death are far outnumbered by those who travel to Swiss hospitals and sanitoria for the very latest and best medical treatments. The evidence from the Netherlands and Oregon is more disputed so what I propose to focus on is the judgment of the people in those countries about their own laws. When voluntary euthanasia was first proposed in the Netherlands in 1966 it was deeply unpopular. It was opposed by 49% of the population. No political party dared legislate for it and it came into being solely on the basis of a series of court cases. In those early years there were many atrocity stories told about what was believed to be happening and frightened Dutch people carried cards saying “Don’t kill me doctor”. Stories were told of people booking themselves into nursing homes outside the Netherlands to feel safer. The Royal Dutch Medical Association and the Dutch Society for Health Law complained that opponents of euthanasia had succeeded in conveying a “very inaccurate and unreliable impression of” the true situation and “in fact voluntary euthanasia is performed far less frequently than had earlier been thought.”7 Gradually the Dutch realized that their fears were quite unfounded and after 30 years experience of voluntary euthanasia the number of Dutch opposed to it dropped from 49% in 1966 to 10% by 1996.8 In 2002 voluntary euthanasia was finally legalized. One effect of the acceptance of voluntary euthanasia by the Dutch people is that they found they were now much freer to discuss all the options of their situation with their GPs. ‘End-of-life-decisions’ have to be made in every country with an advanced medical system. Where voluntary euthanasia or assisted dying is permitted they can be made with the full knowledge and agreement of the patient. This greatly increases trust between patient and doctor. Consequently surveys show that the Netherlands is now the country in Europe where doctors are must trusted. Indeed a staggering 97% of the Dutch population declares their full trust in the medical profession. 9 The case for seeing assisted suicide in the Netherlands as beneficial is that the Dutch themselves have been convinced by experience that it works. The experience of the Dutch has also convinced their neighbours in Belgium and Luxembourg to introduce comparable laws. A similar situation can be seen in the experience of the Oregonians. The Oregon Hospice Association, like Hospice associations everywhere was passionately opposed to the Death with Dignity Act and fought its legality all the way to the US Supreme Court. But the American appeal system is notoriously slow and it took eight years for the case to reach the Supreme Court. But when that court ruled that individual US states could pass such a law the Oregon Hospice Association put out a new position 61

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statement saying that they were glad they had lost because in the first eight years of the working of the Act “Absolutely none of our dire predictions has been realized”. Instead there had been an enormous expansion of Hospice care. In fact the percentage of Oregonians who died in hospices had risen from 22% to 51% during those eight years. 10 I believe we could expect the same thing to happen if we introduced assisted dying in Britain. Lord Joffe’s bill had said that anyone who asked for assistance to die had to be interviewed by a palliative care specialist and made aware of that alternative. Inevitably such a provision would require a massive expansion of our palliative care exactly as happened in Oregon. We may also note that seeing how well the Act was working in Oregon the people of neighbouring Washington State have voted for a similar Death with Dignity Act. Opponents of assisted dying and of voluntary euthanasia often claim that in reality very few people really want their lives to be ended. This is undoubtedly true but it does not in any way lessen the need for the law to be changed, not primarily for those few but for the 80% of us who want to know that that option could be available to us if the suffering we experience in the final stages of our terminal illness were to become unbearable. According to Ann Jackson, Director of Oregon’s Hospice Association “Only 1 of 200 individuals who consider a request, and 1 in 25 of those who formally make a request will actually use a prescription.” 11 Indeed only about 60% of those who actually get the prescription will in the end make use of it.12 Most people who join societies like Dignity in Dying do so because they have witnessed a “bad death” at first hand and are fearful that that fate could await them too. So far from the idea that changing the law could frighten weak and vulnerable people, it would provide reassurance to them that if their worst fears in approaching death were to be realized they would be guaranteed help to release themselves from it. With such assurance they could then get on with the rest of their lives. Until now I have responded to slippery slope arguments for it is on those that most opposition to assisted dying depends. But since most organizations opposed to assisted dying are Christian pressure groups and because the Anglican Bishops in the House of Lords spoke against the last two bills to reform our laws I want to look at the theological arguments. I do this also for the sake of ordinary Churchgoers because opinion polls repeatedly show that they want a change in the law as much as any one else. 13 The problem I have with religious arguments against assisted dying is that they do not cohere with other things that people say. For example when discussing euthanasia people say “Only God should determine the hour of our death” or “we mustn’t play God”. But in every other context they take for granted the desirability of medical intervention. When a person’s heart stops beating we expect and require all medically trained personnel to attempt resuscitation. On March 5th 2010 a paramedic was jailed for a year for failing to try resuscitation. No one opposes resuscitation on the grounds that we are playing God in refusing to recognize that when a person’s heart stops beating this shows that a person has reached the end of his divinely allotted life span. We can’t have it both ways. My view is that God works through people. If the most loving thing to do is to attempt resuscitation then a Christian will see God at work in that action. Equally if the most loving thing to do is to ease a person’s dying that that also represents divine love in action. God works

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through human agency and God’s presence manifests itself in our love one for another. Opponents of assisted dying often cite the command “Thou shalt not kill” as if it were intended as an absolute. It was never taken that way in the Old Testament itself as can be seen in the way the Old Testament law code ordered the wholesale massacre of Israel’s enemies. It can also be seen in the bewildering range of offences for which capital punishment is prescribed but which no bible believing Christian would endorse today. No one for example believes that parents whose son turns out to be a glutton and a drunkard should have him put to death.14 And clergy of my acquaintance are glad that we no longer insist that a priest’s daughter who has premarital sex should be burnt alive.15 Compared to such cases it is very easy to see assisted dying as a far more worthy exception to a blanket ban on killing, More seriously the law “Thou shalt not kill” was never thought of as applying to apply to the suicides reported in the Old Testament and Apocrypha. 16 It is in any case a mistake to confuse murder, which is the taking away of a person’s life with the quite different activity of easing the dying process for someone already near the point of death One reason for opposing making death easier is the belief that suffering is good for us. According to Pope John Paul 2 “suffering especially in the final stages of life has a special place in God’s plan of salvation.”17 The trouble with this argument is that whatever they may think of assisted dying all doctors rightly do everything they can to palliate suffering. The Pope’s views about the religious value of the pains of death are very similar to what all Christians used to think about the religious value of the pains of giving birth. According to the Bible women shall bring forth children in pain.18 That suffering too was seen as part of God’s plan of salvation. But few Christians think like that today and women should be grateful that Queen Victoria insisted on her right to anesthesia in childbirth and thereby changed the climate for every other woman. On the positive side it seems bizarre for any Christian who takes seriously the hope of eternal life to seek to prolong an existence, which has become nothing but torture to the person involved. The early Christians were quite different in their attitude to death than many Christians today. According to one great leader of the early Church St. Athanasius, the best argument for believing in the resurrection of Jesus is the fact that “Christians have no fear of death but rush eagerly to meet it.”19 One of the oldest Christian prayers says: Grant to life’s day a calm unclouded ending, An eve untouched by shadows of decay, The brightness of a holy deathbed blending, With dawning glories of the eternal day. 20 If this is something we can legitimately pray to God for it is also something, which we should be able to ask a Christian doctor to assist God in providing.

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Finally, according to Jesus the whole of law religious law and prophetic teaching can be summed up in the principle of loving God, loving your neighbour as yourself and treating others as you would like others to treat you. 21 R.M. Hare, Professor of Moral Philosophy at Oxford said of these teachings. “I can think of no moral question on which they have a more direct bearing than the question of euthanasia.” 22 This is because opinion polls repeatedly show that 80% of us would like the option of an assisted death if we found ourselves suffering unbearably in the final stages of terminal illness. If that is what we want for ourselves, then in allowing it for others would be directly in accord with Jesus’ central teaching. When people’s sufferings are so great that they make repeated requests for help to die it would seem a denial of that love which is supposed to be the hallmark of Christianity to refuse their requests. If we truly love our neighbours as ourselves how can we deny them the help we would wish for ourselves if we were in their condition?

References 1

Policy for Prosecutors in respect of Cases of Encouraging or Assisting Suicide issued by the Director of Public Prosecutions, February 2010 www.cps.gov.uk 2 O.E.C.D. statistics from http;//www.nationmaster.com/graph/hea_bed-health-hospitals-beds 3 O.E.C.D. statistics from http;//www.nationmaster.com/graph/hea_dur_of ho-health-duration-of-hospitalisation 4 http://www.infoplease.com/ipa/AO934556.html 5 http://apps.who.int/whosis/database/life_tables/life_table 6 th Regina Herzlinger, ‘Switzerland has the medical bills covered, Times February 27 . 2009 7 Margaret Otlowski, Voluntary Euthanasia and the Common Law Oxford Clarendon 1997 p. 437 8 Ruurd Veldhuis,’Tired of living and Afraid of Dying’ Studies in Christian Ethics 11.1 1998, pp. 63-76, 70 9 Z. Kmietovicz, Respect-Why doctors are stll getting enough of it’ British Medical Journal 2002; 324 (7328) 10 Ann Jackson, ‘The Reality of Assisted Dying in Oregon: Draft notes of Compassion in Dying: All Parliamentary Group Meeting 19th. April 2006 p.11 11 Ann Jackson, ‘The Reality of Assisted Dying in Oregon:’ p.3 12 http://oregon.gov/DHS/ph/pas/index.shtml 13 Robin Gill, Euthanasia and the Churches London, Cassell, 1998 14 Deuteronomy 21.18 15 Leviticus 21.9 16 See detailed references in Paul Badham Is there a Christian Case for Assisted Dying London: SPCK 2009 p.32ff. 17 The Declaration on Euthanasia of the Sacred Congregation for the Faith Rome 1980 18 Genesis 3.16 19 St. Athanasius, On the Incarnation London, Mowbray 1963 pp 57-59 20 Translated as the Hymn O strength and stay upholding all creation 21 Matthew 22.37-40, Matthew 7.12 22 R .M. Hare, Essay on Bioethics Oxford, Clarendon 1993 p. 72.

Intellectual property & Copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2011. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Autonomy’s suicide Nigel Biggar

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Campaigners to legalise assisted suicide invoke the principle of arbitrary autonomy. This threatens to give us a libertarian society at the expense of a humane one.

“There should be a booth on every corner where you could get a martini and a medal.” No doubt Martin Amis was exaggerating for stylish effect, but he wasn’t joking. After watching Alzheimer’s disease reduce Iris Murdoch to spending her days gazing at Teletubbies, and after witnessing his stepfather dying “very horribly”, Amis’s support for legalizing assisted suicide has stiffened. “There should be a way out for rational people who’ve decided they’re in the negative”, he said in his recent interview in The Sunday Times Magazine. “That should be available, and it should be quite easy.” Pressed by the relentless stream of cases of ‘rational’ suicide and mercy killing recently publicised by a story-hungry, analysis-shy British media, even long-time defenders of the legal status quo can be forgiven for weakening and wondering if Amis isn’t right, after all. The truth is that some of us face dreadful ways of dying. Sufferers from motor neurone disease, for example, might have to look upon the prospect of suffocating to death. Others with obstructive tumours might have to contemplate spending their last days vomiting their own faeces. But it is not just the dying who have reason to fear. Some of the living are burdened with lives that are severely restricted. Among recent clients of Dignitas (the Swiss clinic for assisted suicide) was the chronically disabled Irishman who could not swallow, whose only means of feeding was a tube inserted into his stomach, and whose capacity to communicate was very limited. Another was Daniel James, the young victim of a rugby accident, who refused to reconcile himself to life as a tetraplegic. And then there was Sir Edward Downes, the frail octogenarian who had no appetite for soldiering on alone after the death of his wife. Under conditions as difficult and miserable as these, how can human life be worth persevering in? Why on earth should we endure it to the bitter end? What could possibly be the point? Yes, palliative care can relieve the distress of most of the terminally ill, but there are always some cases beyond its reach. And it cannot relieve the frustration of the chronically disabled or the despair of the bereaved. Surely therefore compassion obliges the law to let us seek an efficient escape from unbearable suffering, whether through help in killing ourselves (physician assisted 1

Regius Professor of Moral and Pastoral Theology at the University of Oxford, and a member of the Royal College of Physicians’ Committee on Ethical Issues in Medicine Journal of Observational Pain Medicine – Volume 1, Number 1 (2012) ISSN 2047-0800


suicide) or through someone else killing us upon our request (voluntary euthanasia). And besides, don’t we have a right to autonomy? After all, an individual’s life is his own property, for him to use as he sees fit. He is the sole arbiter of its worth, and he alone is competent to decide when it has become intolerable. As for opposition to changing the law, that’s mainly based on a dogmatic obsession with the absolute ‘sanctity of life’, which makes sense only to the dwindling minority of religious believers. To shore up their case, opponents manufacture the fear that legalising assisted suicide or voluntary euthanasia will send us down a slippery slope to murder, but hard empirical evidence from Oregon and the Netherlands now shows this to be irrational. In a nutshell, we have a real problem, to which there is a rational solution: give mentally competent individuals the legal right to decide that their lives should end, give medical experts the legal right to assist in ending them painlessly, and then put in place strict procedural safeguards against abuse. So, at least, runs the liberalizing story. The problem it identifies is real enough, but its solution is not so deeply rational. Closer inspection reveals several flies stuck deep in its ointment. One of the largest is the problem of eligibility. As things now stand, the law in England & Wales and in Scotland—as in most jurisdictions—prohibits the intentional killing of one person by another, except in proportionate self-defence. Since 1961 it has ceased to regard suicide as a crime, not because it doesn’t care whether or not citizens kill themselves, but because it recognises that punishment is not an appropriate response to failed attempts at doing so. Nevertheless, the law has continued to criminalise assistance in suicide, partly to discourage suicide itself and partly to deter malicious help. If we were to decide to breach the law’s current absolute prohibition of intentional killing, in order to allow some to assist others to kill themselves, we would then have to decide who should qualify for assistance. We might well all agree that dying patients whose suffering is unbearable and beyond adequate relief should be eligible. Beyond that, however, plenty of room would remain for disagreement about when suffering is unbearable and when relief is inadequate. And it wouldn’t be very long before someone reminds us that unbearable and irremediable suffering is not confined to the dying. What about the chronically ill and disabled? And then someone else would point out that one doesn’t even have to be physically ill or hindered to experience life as an intolerable burden. What about the chronically and severely depressed, or the bereaved, or the philosophically gloomy? Don’t these too deserve the right to die, come the day when they “decide they’re in the negative” and conclude that soldiering on simply isn’t worth the candle? Further, once we have decided on a set of conditions under which people have the right to assistance in suicide, attention will shift to cases that meet those conditions but where the individuals concerned are incapable of killing themselves. Then we will confront the cruel inconsistency of our granting the benefit of a merciful release to the stronger, while withholding it from the weaker. The logic that brought us to assisted suicide will push us toward voluntary euthanasia.

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Once we decide to breach the absolute prohibition of intentional killing, we might agree upon the need to limit the conditions under which assistance in suicide and euthanasia are permissible, but we will find that there are no very compelling reasons to draw the line in one place rather than another. Given the intrinsic difficulty of deciding where to draw the line, given the propensity of the media to focus on graphic personal stories rather than the larger social context, and given the popularity of the libertarian rhetoric of arbitrary autonomy, there is good reason to fear that any liberalisation of the law will tend toward granting death on demand. If this should seem fanciful and alarmist, then consider the Netherlands, which has had over a quarter of a century’s worth of experience of trying to design a suitably stringent legal framework for regulating assisted suicide and voluntary euthanasia. Since 1984 Dutch law has in effect permitted doctors to assist patients to die or to be killed upon request under certain conditions. These conditions do not stipulate terminal illness. They do not clearly stipulate physical illness. They only require that the candidate’s suffering be unbearable and without hope of improvement. Accordingly, in the Chabot case of 1994 the Dutch Supreme Court judged that a 50year-old woman, who was physically healthy but in persistent grief over the death of her two sons, was subject to ‘unbearable suffering’ and legally eligible for assisted suicide. Six years later in the Sutorius case a trial court in Haarlem judged it legal to give assistance in suicide to an elderly patient who felt his life to be “empty and pointless”. Now it is true that an Amsterdam appeal court later overruled the trial court’s judgment, arguing that doctors have no competence to judge ‘existential’ suffering resulting from loneliness, emptiness, and fear of further decline. It is also true that the Supreme Court denied Dr Sutorius’ subsequent appeal to have his conviction quashed, holding that a patient must have “a classifiable physical or mental condition” to be eligible for medical killing. These judgements have settled nothing, however, and the debate rumbles on. In 2004 the KNMG (Royal Dutch Medical Association) published the ‘Dijkhuis report’, which argued that someone who is no longer able to bear living any longer and has a hopeless outlook on their future could be said to be “suffering from life” and should therefore be eligible for assisted suicide or voluntary euthanasia. This view has not yet won the support of a majority of the KNMG’s members, but it is being championed by the Dutch Right to Die Society (NVVE), which is often taken by public bodies to be the representative of patients’ interests. If the NVVE should get what it wants, then the Netherlands would be well on its way to enshrining in law the principle of arbitrary autonomy. ‘Suffering from life’ is not a medical condition, and there are no medical grounds on which doctors would have the authority to contradict an individual’s claim that he feels such suffering to be unbearable and hopeless. The United Kingdom is not the Netherlands, of course. We could adopt stricter arrangements here. We could permit only assisted suicide and not voluntary euthanasia, and we could limit eligibility to the terminally ill—as they do in Oregon. Indeed, that is exactly what the major British campaigning body, Dying in Dignity, is currently pressing for. However, there are two reasons to think that if we start with Oregon we won’t stop there. The first is cultural. Oregonians, being American, are typically allergic to the state and analogous institutions and zealously protective of individual liberty. So whereas they are willing to grant individuals medical assistance in killing themselves, they refuse doctors the authority to kill their patients under any conditions. Britons, however, are not American. They have a more benign, European 67

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view of the state, of state-run health care, and of those who provide it—just like the Dutch. The second ground for doubting that we would rest with the Oregon model is logical. The reasons for restricting the right to die to those terminally ill who are capable of suicide are not at all strong. Indeed, one of the liberalising campaign’s leading lights, Lord Joffe, has stated in public on several occasions that the rationale for the currently proposed restrictions is simply political: as things now stand a more cautious bill has a greater chance of winning sufficient support to become law than a less cautious one. He fully hopes and expects that sooner rather than later the restrictions would be lifted. That he would not long be disappointed is suggested by the fact that, of the recent cases that have been seized upon by much of the British press to promote a change in the law, several already fall outside the tactically cautious arrangements proposed by Dying in Dignity. Neither Daniel James nor Edward Downes were terminally ill. Nor were they suffering unbearable physical pain. They were just ‘tired of life’. BUT why shouldn’t we go the whole libertarian hog and grant all rational adults the right to die or be killed on demand—as the director of Dignitas, Dr Minelli, enthusiastically recommends? So long as the decision for assisted suicide or euthanasia is made freely by the individual concerned, what reasonable objection could there be? One objection emerges when we roll libertarian logic out to its logical conclusion. If we were to reform the law so as to allow competent adults absolute, arbitrary autonomy over their own lives, then it would have to permit consensual vivisection and killing. In other words, should an individual consent to being mutilated and killed—say for sexual gratification—then the law would have no objection. In its eyes, the individual would be master of his own life and if he should choose to spend it in what other people consider to be a macabre fashion, then that would be his business and his alone. In case this sounds just too bizarre to be worth considering, we should remember that in 2004 Armin Meiwes was tried in Germany for mutilating, killing, and eating a 43-old computer engineer, who consented because, according to the judge, “he wanted to get the kick of his life” (Guardian, 31 January 2004). The fact that Meiwes was convicted of manslaughter, and not just acquitted, is witness to the commitment of German law—as of all traditional Western law—to some concept of the objective worth of human life that is independent of the subjective preferences of individuals. In spite of the consent of the engineer, his life had a worth that both he and his killer violated: that is why Meiwes was punished. It follows from this that if English and Scottish law wishes to maintain a commitment to upholding the objective worth of human life, then it cannot grant to individuals absolute, arbitrary autonomy over their lives. I could let this part of the argument rest there. I could presume that every reader agrees that it would not be desirable for Britain to become a society where consensual cannibalism is regarded as a permissible lifestyle; and that therefore the principle of arbitrary autonomy is not one that English and Scottish law should incorporate. But let me push the argument one stage further, and try to explain my position. First of all, I appeal to the common sense notion that someone can choose to squander or waste his own life. Such a notion certainly makes sense in terms of my own experience; and from what others say and write it would appear to make sense in terms of theirs too. But if it does make sense, then that is only because we recognize 68

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that our lives might actually have an objective worth that we sometimes choose to ignore—that it has an objective worth that can stand over and against us in judgment upon our own free choices. Otherwise put: it makes sense only insofar as our autonomy is not arbitrary, but is responsible to a given moral context. Further, if we were to regard the individual as the sole arbiter of the worth of his or her life, then how could it continue to oblige the care and commitment of other people? If the worth of your life is entirely contingent upon your judgement, and if I view your judgement as wrong-headed, why should I expend my time and energy in supporting your life? Suppose that you value your life rather more than I value it. Why should I prefer your judgement to my own? Perhaps indifference or self-interest would move me to ‘respect’ your judgement in the thin, negative sense of not interfering with it; but such arm’s-length respect falls a long way short of positive care. One problem with dissolving human worth into individual freedom, instead of making individual freedom serve objective human worth, is that it becomes very hard to see why that worth should command our neighbour’s love. Another problem is that when arbitrary autonomy severs itself from responsibility, it haemorrhages its own value. A third reason why the law should not incorporate the principle of absolute, arbitrary individual autonomy is because the private and the public realms are not in fact sealed off from each other. What we do and how we form ourselves in our so-called ‘private’ relations does inform how we behave toward others in ‘public’. If society tells its members, through the law, that a life spent in drug addiction or lethal masochism or ended early in suicide is quite as acceptable as any other—so long as it is freely chosen—then those who choose such lives will become prey to passions that will drive them to abuse and to violate their neighbours. The drug addict’s passion for a ‘high’ and the suicide’s passion to escape and the sado-cannibal’s erotic passion to penetrate and consume renders them incapable of respect for the legitimate claims of other people. The drug addict will assault and rob to get money for his next fix, the suicide will end his own life no matter how many other lives he ruins as a result, and the Armin Meiweses of this world will not be as solicitous of their victims’ consent the second time around. The notion that we are all rational choosers is a flattering lie told to us by people who want to sell us something. They want a free hand in making a profit out of our fears and desires. The less flattering truth is that much of the time we are driven by social and psychic forces that we barely understand—and even less control—and that hinder us from paying attention to other people. We creatures of passion need the support of legal and social constraints to become the kind of people who are capable of looking beyond their own felt needs to heed the claims of their neighbours. The problem with the libertarian principle of arbitrary autonomy is that it would rob us of this support. The champions of lawful assisted suicide tend to have sunny dispositions. They assume that all is basically well with society. They assume that the legislation they propose will operate in a fundamentally humane social context, where patients can usually rely on the generous support both of health care services and relatives. They assume that procedural safeguards are all that is needed to guarantee genuine patient autonomy. And they assume that one can tell an authentic, free choice by its persistence.

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But this is largely well-heeled fantasy. According to Help the Aged, about half a million older people are being abused in the UK at any one time, two thirds of them at home by someone in a position of trust. Over half the theft and fraud against older people is committed by their own children. The scale of the problem has been confirmed by Britain’s most senior policewoman, Barbara Wilding, who recently reported “an increase in abuse of the elderly, which often takes place behind the closed doors of the family home”, and who predicted that it will become “the next social explosion” (Daily Telegraph, 29 August 2009). As for the quality of professional care, Julia Neuberger reports (Not Dead Yet, 2009) that those ‘care-assistants’ who deliver most of the hands-on care of the sick and elderly are poorly trained and poorly paid—“short-term employees doing dirty work for little money and no emotional and ‘respect’ reward”. This “miserable reduction of care workers into harried, time-watching automatons—with no time for human interaction—is corroding the quality of care all the time”. This is the actual social environment in which the legal right to assistance in suicide would often operate: one where the elderly and the chronically ill are often neglected, malnourished, isolated, and even resented. This is the inhumane social context that would inform the autonomy of ailing individuals, and move them to persist in an authentic choice to stop wasting space and die. Formally speaking, of course, such choices would be entirely free; but theirs would be a freedom evacuated of hope by a characteristically impatient, often callous, and sometimes hostile society. The proponents of the right to assistance in suicide are naïve to suppose that the humanity of British society can be taken for granted. They are also naïve to imply that the granting of a legal right to die would legislate patient suffering away. It won’t. Mistakes will be made, and even assisted suicides will be botched. After all, we’re talking about the world of human activity, where perfect solutions are not known to dwell. In sum, the flies that stain the rational ointment of a mooted right to assisted suicide are as follows. Very likely it would be just a temporary Oregonian stopping place on the road to Dutch-style voluntary euthanasia. It would open up intractable arguments about the conditions of eligibility, which would invite the libertarian solution of granting arbitrary individual autonomy and killing on demand. This would serve to undermine positive care for the lives of others, lift legal and social prohibitions that protect individuals from self- and socially destructive passions, and jeopardise such a humane social ethos as we now have. This ethos is neither as extensive, nor as deep, nor as secure as the sunny liberalisers suppose. Nor would their preferred solution to the problem of patient suffering be as perfect as they imply. For sure, the concern to maintain society’s commitment to supporting human worth in adversity, which underlies this argument’s opposition to changing the law, is one that many religious people will share. But it is also one that fuels majority opposition in non-religious bodies such as the House of Lords, the Royal College of Physicians, the Royal College of General Practitioners, and the British Geriatrics Society. Opposition to making assisted suicide lawful really can’t be brushed disingenuously aside as the manipulative child of religious conspiracy. As discussed, legalising assisted suicide is seriously problematic, but so is the plight of those who now live and die in distress. If we refuse them right to assistance in killing themselves or to be killed upon request, what alternative solutions are available?

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Insofar as the problem is the fear of being kept alive in intolerable circumstances, current law does not oblige patients to strive to stay alive at all costs, and it already grants them a right to refuse treatment that doctors must respect. This should not be read as sanctioning suicide. It merely recognises that some may reasonably prefer to conserve their limited energies for the process of dying rather than expend them in straining to stay alive. It is true that some doctors are overzealous in striving to ‘save’ their patients, which implies a need to reform medical education. Doctors need to be educated to see their proper role as including helping patients to die well, and not simply as fending off death. Certainly, that should involve their being made far more aware of the considerable resources of palliative medicine and care. But it also requires more than technical training. It requires a spiritual formation in which doctors are made into the kind of people who, when faced with death in the eyes of the dying, have the moral strength to resist the natural instinct of mortal human beings, and not to turn away. The provision of palliative care in the UK is still very patchy. The availability of inpatient palliative care beds, for example, varies dramatically from region to region— and not because of varying levels of demand. If we really care to improve the conditions under which most people die, then there remains plenty of scope for investing more energy and money in building more hospices, multiplying specialist palliative care teams, and integrating palliative expertise more thoroughly and universally into the health care system. But what about that small minority of patients whose suffering cannot be managed by normal palliative means? In those rare cases recourse can be had to palliative sedation, which renders patients unconscious. Sometimes doctors fight shy of this, because they fear killing the patient. Given the contemporary sophistication of drugmanagement, this fear is very largely misplaced. Nevertheless, were sedation to hasten a patient’s death, it would raise no moral or legal objection so long as it had been proportioned to the relief of distress. Together these measures would go a long way to reducing the suffering of patients. But they comprise no perfect solution. They offer no answer to the frustration of a Daniel James or the prospective loneliness of an Edward Downes. Nor do they offer an end to the sufferings of the grievously bereaved or the chronically depressed or the long-term unemployed or the wretchedly poor. Nor do they offer relief to those sentenced to spend the rest of their lives behind prison walls—at least one of whom, according to his personal correspondence with this author, would jump at the chance of assisted suicide, were it on offer. Compassion obliges us to do what we can and what we may to relieve human suffering. But there are some things that we could do, which we shouldn’t—because they create more problems than they solve, or because they jeopardise more people than they relieve. Prudence obliges us no less than pity. If the law remains as it is, of course, criminal sanctions would continue to threaten those who help others kill themselves. Since assistance in suicide can be malicious or culpably negligent, it is right that the law should continue to seek to deter it. In difficult, gray cases, however, where neither malice nor negligence is evident, the 71

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Director of Public Prosecutions (DPP) has the liberty to decide that prosecution would not be in the public interest. This liberty he has in fact exercised on many recent occasions, with the result that Daniel James’ parents and their like have suffered no penalty. The current arrangement is not perfect: well-intentioned helpers in suicide are presumably subject to a measure of anxiety until the DPP reaches his verdict. But precedent should reassure them: none of those accompanying the more than one hundred British citizens who have killed themselves with Dignitas’ assistance has been prosecuted. And the publication of the DPP’s criteria should have reassured them further. In the end, the law has consistently and wisely refrained from bringing its threats to bear in such fraught cases, and it will continue to do so. The human suffering that assisted suicide proposes to solve needs to be taken seriously. But the relaxation of the law prohibiting intentional killing would give us a radically libertarian society at the cost of a socially humane one. And besides, there is another way—still not perfect, but a lot more prudent. An earlier version of this article appeared in Standpoint Magazine (Issue 20, March 2010).

Intellectual property & Copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2012. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Assisted suicide in the UK 1

Revd Dr Brendan McCarthy

Introduction Assisted suicide has been one of the most hotly debated ethical and social issues of the twenty first century, to date. It has seldom been far from the front pages of newspapers and has exercised the minds of lawyers, health professionals, religious leaders, social commentators and parliamentarians. Key mile-stones in the debate so far have included the European Court’s rejection of Diane Pretty’s argument that the right to life also includes the right to choose how and when to die (2002), a series of rejections by the House of Lords of various attempts, introduced by Lord Joffe and others, to legalise assisted suicide (2003-), the report of the House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill (2005), the Director of Public Prosecution’s decision not to prosecute Daniel James’ parents for assisting his suicide (2008), Diane Purdy’s successful appeal to the Law Lords (2009) which resulted in the DPP issuing guidelines with regard to the application of the law on aiding and abetting suicide (2010) and media interest in high-profile cases of individuals seeking a change in the law because of their personal circumstances, typified by Terry Pratchett’s Richard Dimbleby Lecture (2010). The arguments for and against legalising assisted suicide in various forms and under various conditions have been exhaustively explored. It is fair to say that no single argument (or combination of arguments) has succeeded in carrying the day one way or the other; an indication both of the complexity of the issue and of the diverse ways in which people approach the subject. Personal background, philosophical, moral or religious beliefs, individual temperament and group pressures are all factors that have played a part in people’s response to the issue of assisted suicide. Much more than rational argument is involved in this debate, a point that seems to have been missed by some protagonists. That such is the case, ought not to surprise us; we normally “process” life through an amalgam of thoughts, feelings, perceptions, relationships and experiences that together inform ‘our’attitudes and responses. This paper does not attempt to rehearse all of the various arguments presented in the debate, but rather, in the first instance, it attempts to address how the salient features of the debate itself have been presented and perceived in the United Kingdom: in parliament, through the media and by various professional and community groups and forums. This ‘broad-stroke’ approach reflects the fact that people are often more influenced by powerful arguments than by careful ones although, of course, the two are not mutually exclusive. Following this first section of analysis and commentary on the debate, the second part of this paper makes suggestions with regard to ways in which Christians and others may continue positively to contribute to the development of the debate.

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Part I: Analysis and Commentary Who is being Dogmatic? One of the common perceptions that has surfaced regularly throughout the debate is that those who oppose assisted suicide do so on the basis of (mostly religious) dogma while those who wish to allow assisted suicide under certain conditions, do so on the basis of compassion. The issue of compassion will be discussed below, but for the moment it is worth exploring the place of dogma in the debate. ‘Dogma’ is something of a dirty word, evocative of the Inquisition or of relentless adherence to received interpretation of revelation, regardless of human cost. As such, the word is sometimes employed to encapsulate the arguments of religious leaders opposed to assisted suicide. By so doing, their arguments are subsequently often dismissed not principally because of the cogency or otherwise of the arguments themselves but because of the alleged desire of these leaders to pressure others into following, or even obeying, their injunctions. Religious leaders may plead in vain that this is not their intention, even that such an approach is inimical to them, but the damage has been done: dogma goes hand in hand with religious intolerance and, on principle, it ought to be rejected. If, however, we replace the term ‘dogma’ with the term ‘principle’ we are on different ground. ‘Principle’ is widely seen as being a good thing; it informs and enables personal and communal decision-making. In debate, ‘principle’ is what ‘we’ employ; ‘dogma’ belongs to the opposition. In attempting to pursue an honest debate on assisted suicide, it ought freely to be admitted that principle is important to everyone involved in the debate. Principles may differ (though, perhaps not as radically as some assume) but principle is to be found in equal measure on ‘both sides’. The objection is still often made, however, that a principle based on religious belief may be set to one side by those who do not share the religious basis for that principle. Such a principle, it is argued, is fine for religious people but it ought not to enjoy any wider currency in a largely secular society. This stance has frequently been taken during the debate on assisted suicide, but it is based on (at least) two problematic assumptions. The first is that our society ought to be secular rather than pluralist. In a secular society, religious principles may be set to one side as religious principles. In a pluralist society, however, religious principles are to be as valued as nonreligious ones and ought to have a role to play in the formation of society; not dismissed because of their origin. A fundamental issue is at stake when religious leaders speak: is their voice to be welcomed in a pluralist society or to be ignored in a secular one? Pluralism may have its problems, but these are surely to be preferred to any form of sectarianism, of which secularism is but one example. Secondly, we each arrive at the principles that guide us through life through a mixture of experience, education, relationship, argument and personal ‘beliefs’. The beliefs that we adopt may be essentially religious, political, and philosophical or, indeed, eclectic, but most of us act ‘out of’ our beliefs. These may change, develop or even be somewhat amorphous, but their influence is pervasive; they are what enable us to make decisions from day to day without having to go back to first principles on every occasion. Individuals with disparate beliefs may hold similar convictions and principles; they may arrive at them from different starting points, but may find common cause on the basis of the integrity of the principles that they share. In the 74

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context of assisted suicide, people of various religious beliefs and of none may agree on, for example, the principle that life ought to be protected in all circumstances. It is entirely appropriate for this principle to be challenged in debate; it is inappropriate for it to be dismissed because of the underlying beliefs that a particular individual or group may hold. In answer, then, to the question, ‘Who is being dogmatic?’ the reply ought to be either ‘no-one’ (if dogmatism is used as a pejorative term), or ‘everyone’ if, by dogma, we mean ‘principle’.

Who is being Compassionate? As stated above, another common perception, evident during the progress of the debate, has been that religious dogma on one side is countered by compassion on the other. Compassion is presented as being the over-riding force driving those who wish to see a change in the law on assisted suicide while other ‘impersonal’ principles lie behind opposition to change. As presented, compassion trumps everything else; after all, what could we possibly place above compassion in our relationships with one another? Once again, there are (at least) two problems with this approach. First of all, it is not correct that compassion is the sole, or in some cases, the primary motivation of those who espouse a change in the law; the principle of individual autonomy is an equal and, at times, greater motivating factor for many (see below). Secondly, it is manifest that compassion is a strong motivating factor on both sides of the debate. What is really at issue is not compassion versus dogma, but varying interpretations and applications of what it means to be compassionate. On the part of some, there has been an assumption throughout the debate that compassion may best, or even only, be expressed, in certain circumstances, by acquiescing in a request for assisted suicide. Problems, however, abound with this assumption. It is always invidious to claim the high moral ground for oneself at the cost of denying access to the same slopes for others who hold different opinions. To claim that compassion can only be appropriately expressed in a particular way is an assertion that may only be employed in very limited circumstances. To give water (appropriately) to a child dying of thirst is, clearly, the only compassionate response to make during a catastrophic drought if, indeed, we are able to intervene in this way. It may also be convincingly argued that to administer a coup de grace to someone inescapably trapped in a burning vehicle is, similarly, the only compassionate way to respond to such immediate, horrific, inescapable and terminal suffering. Conversely, if someone were to request money from us in order to help them buy food, an equally compassionate response to giving them cash would be to pay them for carrying out some agreed task. Factors other than compassion would indicate which course of action might be the better one in any given circumstance, but both actions may be viewed as being equally compassionate. The question that presents itself then, is whether a request for assisted suicide is akin to the dying child or trapped motorist examples or whether it is akin to the example of alleviating poverty? The factors that are most pertinent in our examples of the 75

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dying child and the trapped motorist are the severity of the situations and the lack of alternative compassionate actions. Both cases involve extreme suffering and both cases allow for only one compassionate response. Had the situations been less severe or had there been alternative ways of removing, or at least, alleviating the suffering involved, then more than one compassionate response might have been possible. In cases of assisted suicide, it is difficult to see how there can be only one compassionate response to the distress or suffering of the person requesting assistance. Is it ever the case that the only compassionate response to mental distress is to agree to a request for assisted suicide? Similarly, are there really medical conditions in which physical pain can only be alleviated by death, rather than by pain management, including, if necessary full sedation? Is pain management not at least as compassionate a response as assisted suicide? The question may still reasonably be asked, ‘How, in a particular set of circumstances, might we decide which is the most compassionate course of action to take?’ Here, we need to look more closely at the assumption that the most compassionate thing to do, in the context of assisted suicide, is to accede to individuals’ free and informed request for assistance. After all, it is argued, they will know best how their own suffering or distress ought to be alleviated. Surely we ought to do what they wish if we truly love them. It is easy to see why, at first glance, this argument seems to be persuasive, but a little reflection indicates its inherent flaws. On what basis can we determine, for those who love us, what their response of love or compassion ought to be? If we are fortunate enough to enjoy the love of friends and family then as ‘the loved’ we cannot dictate how ‘the lover’ ought to act. For individuals to suggest that others must agree with their insistence that the best or only compassionate response to their plight is to assist them in ending their lives is to promote ‘the tyranny of the loved’. In effect it is saying, ‘If you love me you will do ‘this’ and if you refuse you cannot truly love me.’ This is unacceptable relational and emotional coercion. In a loving relationship there must always be freedom for love to be given in a manner that is a true and genuine reflection of the lover. If this were not so, relationships will buckle and crumble under the weight of unsustainable demands. It is true that the loved may wish that the lover might have chosen a different way of expressing love; he or she may even reject an action as being loving or compassionate, but no one may demand how love ought to be expressed. Similarly, no lover ought to be pressured into feeling that his or her love may only be demonstrated in the way that someone else would express love, even if that someone else is the one to whom they wish to express their love. It is, of course, the case that agreeing to help someone to die may be a decision born from genuine compassion and it may also be the case that both the lover and the loved agree that this is the most compassionate thing to do. Conversely, however, refusing to help someone to die, but offering instead, continued love, practical support and access to appropriate care may be equally compassionate. Both responses are compassionate; factors other than compassion will indicate which course of action we may choose to take. In effect, it is not on the grounds of compassion that decisions are made with regard to assisted suicide, since alternative but equally compassionate decisions may be taken. Behind the desire to act compassionately lie other principles and beliefs that indicate how best we believe we ought to demonstrate compassion and it is on these potentially competing principles that our attention needs to be focused.

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Principles in Conflict It has been a strange feature of the debate on assisted suicide that much of it has been conducted discussing ‘practical’ issues such as the likely effectiveness of legislative safeguards while what lies at the heart of the debate is disagreement on matters of principle. Practical and pragmatic issues are important but they are ‘second-order’ concerns compared to the principles that underlie the positions of the various protagonists. It is understandable that both sides in the debate have argued tactically, often preferring to highlight, for example, problems of care provision on the one hand and ‘slippery slope’ arguments on the other, but there ought to be clarity that what is at issue is, primarily, a case of ‘competing’ principles. To date, the main competing principles have been protection of life on the one hand and individual autonomy on the other. For most protagonists neither of these principles is absolute in the sense that no limits or exceptions can be permitted. Most people who oppose assisted suicide accept that a life may be taken, for example, in self-defence even if the actual life of the victim is not in unequivocal danger while most who wish to see the law changed accept that they do not have untrammelled freedom of choice with regard to their own bodies, for example, the freedom not to wear clothes regardless of the social environment. Similarly, both principles are important to protagonists on both sides of the argument: those opposed to assisted suicide do not want a totalitarian (or theocratic) state and those advocating a change in the law do not advocate mass killings! Nonetheless, those on either side of the debate balance these two principles differently and that is the nub of the issue. All other arguments are utilised, in good conscience, to bolster the primacy of one or other of these principles. It is important, however, to be clear on precisely how the principles of protecting life and individual autonomy may compete or conflict in the context of assisted suicide, recognising that those on either side of the debate may well otherwise agree in many areas of legislation aimed at protecting life and guaranteeing individual freedom. Assisted suicide presents the relatively uncommon situation where one person, through illness or disability, is unable to exercise autonomy in ending his or her life at the time and in the manner of his or her own choosing. Autonomy to take one’s own life is permitted, though not encouraged in existing legislation. The person who is unable to effect suicide then wishes another person to be allowed to exercise his or her autonomy in helping this goal to be achieved. The central issue is not whether an individual has the autonomy to end his or her own life (suicide) nor is the issue whether an individual has the autonomy to end the life of another (murder or manslaughter). The law is clear on these points and is not contested: suicide is not a crime; murder is. The debate to date boils down to this: on the one hand, the principle of autonomy ought to include an individual’s free choice to assist another individual to end his or her life or, on the other hand, the principle of protection of life ought to preclude one individual being permitted to choose to assist another individual in ending his or her life. Ultimately, the debate is not about the individual autonomy of the person who wants to die; it is about the limits of autonomy of the person who wants to assist the suicide. This salient fact has often been lost sight of as arguments and presentations tend to focus on the desires of the person wishing to die, but it is essential as the debate continues to develop, that the question of autonomy is put in the correct context.

What’s in a Word? As debates develop they tend to take on something of an identity of their own, building their own vocabulary and established rules of engagement. One such ‘rule of 77

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engagement’ that requires challenge is the tendency outlined above to focus on the issue of the autonomy of the person wishing to die rather than on the autonomy of the person who wishes to assist a suicide. It is difficult to believe that the public debate as portrayed by the media would have been quite the same if the partner, parent or friend of a person wishing to die were to come on television arguing for the ‘right’ to assist in the death of another person. Similar ‘blind spots’ have developed around some of the language used in the debate. One example is the use of the phrase ‘to alleviate suffering’. The meaning of this phrase is clear: it means ‘to mitigate’ or ‘to make easier to bear’. This, however, is not the impression that the phrase carries in the debate on assisted suicide where it is often presented as implying that suffering ought to be removed. It is one thing to say that assisted suicide ought to be permitted if intolerable suffering could not be made easier to bear; it is quite a different thing to say that it ought to be permitted if suffering cannot be removed altogether. Suffering is an inevitable part of human life and it is, to some degree, a part of dying for many people. Among other things, palliative care aims to lessen suffering for the dying just as non-palliative medicine aims to lessen suffering for those who do not have a life-threatening illness. Complete absence of pain, distress or suffering and the presence of health and wellbeing are, of course, the ideal, but, in practice, this is not the stated goal of most health care interventions. The humbler goals of pain management and symptom alleviation are realistic achievements that health professionals try to attain. To suggest that our lives, including our dying, can be pain and distress free is both unrealistic and (unintentionally) cruel. The only way in which we can be assured of being free from all distress is to be so heavily sedated that we are unable even to dream. In some cases, as death approaches, it may be necessary to sedate a person in order to lessen their suffering; for them the only alleviation may have to come at the price of losing consciousness completely, but such events are relatively rare. In most cases, alleviation of pain, suffering and distress means managing symptoms, balancing comfort and consciousness until the dying process itself leads to unconsciousness. Similarly, assisted suicide is often referred to as assisted dying as if the terms were interchangeable. Assisted suicide refers to assisting a freely chosen and informed decision taken by an individual to end his or her own life at a time and by a method of his or her choosing. That is the focus of the current debate. Assisted dying is what takes place throughout the country on a daily basis in hospices, hospitals, nursing homes and private dwellings, as those who are dying are assisted in a variety of ways to end their days in as positive a manner as possible. While accepting that end of life care involves decisions that may see medical interventions withheld or withdrawn, thus allowing the process of dying to proceed more rapidly than might otherwise have been the case, there is a clear distinction both in intention and in context between this and assisted suicide.

Principle or Practice We have already noted that while there are important principles undergirding the debate on assisted suicide, much of the debate involves discussion of practical issues such as the efficacy of safeguards against abuse if the law were to be changed, the likelihood or otherwise of ‘slippery slope’ concerns, the impact of a change in the law on the relationship between health professionals and patients as well as current and prospective palliative care provision. The ‘law of unintended consequences’ as evidenced by possible societal changes whereby assisted suicide and, then perhaps, euthanasia become not only acceptable but part of normative communal life, is also a 78

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concern for many who oppose assisted suicide. These practical issues are real enough and deserve detailed and proper consideration but there is little escaping the fact that they are approached differently by those on opposing sides of the debate. Not surprisingly, because of their differing principled starting points, their analyses render different conclusions. Slippery slope arguments that see assisted suicide as the first step on the road to euthanasia, or that fear for the safety and well being of vulnerable people who may be abused by their relatives, are genuine expressions of concern and not mere scare tactics. Counter arguments that tend either to point to a lack of hard empirical evidence for such concerns or that quote statistics from other jurisdictions that permit assisted suicide such as Oregon, Switzerland or the Netherlands are also genuine attempts to allay such fears. On the face of it, it might appear that both sides in the debate are so entrenched in their positions that they simply view the available data from their own perspectives and interpret it in a way that strengthens their chosen positions. In truth, it may reasonably be observed that those opposed to assisted suicide are hard-pressed to find evidence from those jurisdictions that allow the practice that suggests that all of their fears are well-founded: deterioration in the nature of the relationship between health professionals and patients, for instance, or a lessening of interest in and application of resources for palliative care, do not appear to be evident. Conversely, those in favour of a change in the law tend to pass too easily over evidence of such social ills as elder abuse, widely attested within the UK and other countries, or they tread lightly on the Dutch pathway that led from assisted suicide to involuntary euthanasia of infants. Such observations, while instructive, fail, however, to reach the heart of the matter. What, in effect, is being discussed is risk-assessment and risk management. For those who oppose assisted suicide, the situation is clear: at present there is an extremely low risk of vulnerable people being pressured into assisted suicide and the road down any number of slippery slopes is, effectively blocked. There is a risk of people who wish to have assistance in ending their lives, suffering further distress because their requests are denied, but the status quo offers a much better riskassessment outcome when compared to any change in legislation. Statistics from other jurisdictions can never guarantee that abuse, errors and unintended consequences will not occur and, when they do, even one such occurrence is one too many. For those who wish to see the law changed, the risks associated with such a change are seen as being risks worth taking. It is probably the case that many of those opposed to assisted suicide have a somewhat inflated view of the risks involved, but their starting (and finishing) point is that any risk greater than the present one is unacceptable. It is also probably the case that many of those in favour of legislative change minimise the real risk, taking too optimistic a view both of human nature and of societal regulation, trusting that the consequences of a change in the law can be predicted and that they will, on balance, be positive. Again, it is worth emphasising that the attitude to risk cannot be divorced from the principled positions adopted by the protagonists. Neither an extreme risk nor a negligible risk can be demonstrated; it is a matter of the degree of risk that people are willing to countenance, commensurate with their principled position. Before leaving this section, one further area of major interest that has emerged during the debate needs to be considered: the provision of care. Whether the focus is on palliative care or on support for those living with long-term illnesses and 79

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conditions, recent contributions to the debate have, correctly, highlighted the fact that optimal care is not available for all who need it. Indeed, in too many cases, the level of care and support available both to those suffering from illness or disability and also to their carers, falls well short of what is acceptable. This, perhaps, more than any other single factor, has prompted many who are undecided in principle, to lean towards favouring a change in the law. Faced with the reality of ongoing misery for both sufferer and carer, without any meaningful hope for change, the desire to ‘have it all come to an end’ is entirely understandable. Just as a starving person will take little interest in debates on fiscal policy, regardless of how important such discussion may actually be for his or her future welfare, many people trapped in mutual misery are unlikely to look beyond their own immediate circumstances. Of course, in many cases, it is precisely these people that the current law seeks to protect, recognising that depressing circumstances are likely to lead to depressed people who may make decisions other than the ones that they would make were their circumstances to change. At the same time, unless society in general and, perhaps, those opposed to a change in the law in particular, make genuine and strenuous efforts to alleviate such misery, words about the value of human life are likely to ring hollow to many ears. While there is much about health care that is specialised, there is also much that is simply relational. In practice, the issue of assisted suicide may be settled for many people by whether or not others outside the immediate care environment can be bothered to lift a telephone, call round for a chat or arrange a social outing.

The Bigger Picture Our examination of the debate, so far, suggests that an important sub-text is the issue of the type of society that we wish to live in and help to shape. This is so, not in party-political, religious or cultural-identity terms, but, rather, at the very fundamental level of the nature of the contact between the individual and society. Put bluntly, where do we draw the line between individual autonomy and social responsibility? To state it less clinically; where do ‘I’ stop and ‘we’ begin? Of course, the line between individual autonomy and social responsibility is going to be a blurred one, wherever we choose to locate it. ‘I’ and ‘we’ overlap in different ways in different environments. Nonetheless, there is a clear difference in approach between those who understand integration with the community to be a matter of personal choice and those who view community integration as the right and proper context for life. Neither position ought to be caricatured by its extremes and both positions allow for a large degree of individual freedom as well as community cohesion, but the essential difference of approach manifests itself in the ways in which individuals approach a range of societal issues. In the context of the debate on assisted suicide the ‘individualists’ promote individual autonomy as the central principle involved, they favour managed risk over against the status quo and they view society as having an obligation to assist the individual in achieving his or her aspiration of suicide. The ‘integrationists’, conversely, promote protection of life as the main principle at stake, prefer minimal risk over against change with added risk and they view the individual as having an obligation to assist the rest of society in promoting community cohesion. As stated earlier, these are, of course, ‘broad-strokes’ and there are many people who arrive at very similar places within the community having started from different positions, but, this broad categorisation is useful in setting the debate on assisted suicide against an appropriate backcloth as well as indicating the wider issues at stake.

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Part II: A Way Forward? So far, we have focused our attention on analysing salient features of the debate, but what of its future development? In particular, as the debate continues, is there a contribution that Christians can make that is, at one and the same time, consistent with Christian theology and ethics and that may also commend itself to others on the grounds of the principles that it promotes? Of course, there may well be quite a number of contributions that can be made that meet the above criteria. Debate among Christians, and between Christians and others, with regard to which, if any of them, is to be preferred, is to be welcomed and encouraged. The suggestions advanced in this section are offered in the hope that they will contribute positively to the ongoing development of the debate.

Agreed Principles One striking feature of the debate has been that, in spite of real and obvious disagreement on whether the law on assisted suicide ought to be changed, most protagonists have, in fact, agreed on the mutual salient principles that undergird their respective positions. As we shall see, these principles, once identified, may require a degree of refinement or restatement in the further development of the debate, but there are very few contributors, for example, who have shown no desire to see vulnerable people protected. What is largely at issue, in the first instance, is the way in which the salient principles interact with one another: which, if any, takes precedence over the others? In a similar way there is disagreement over how the principles ought to be applied in practice. There has also been some degree of ambiguity on both sides of the debate with regard to the consistency with which they have applied their principles. For some, the principle of protecting life demands that assisted suicide remains an illegal act, although there is no call from them to have suicide re-criminalised. It is unclear, however, on what principled basis they have made this distinction. For others, neither suicide nor assisted suicide, in principle, is seen as being incompatible with a commitment to protecting life, but they otherwise voice support for suicideintervention programmes. Again, it is unclear on what principled basis they have come to these conclusions. The inference that may be drawn is that, in the final analysis, some conclusions are, indeed, based on factors other than reason and that these factors may have gone largely unrecognised. Nonetheless, most contributors to the debate have presented arguments outlining why their chosen position is both defensible and ought to be accepted by others and yet, many have failed to demonstrate a consistent moral logic underlying their conclusions. In unravelling some of the tangles of the debate it is important, then, not only to identify what the salient principles are, but also to suggest how they ought to relate to one another. It is also important to propose a method whereby these principles may be applied consistently. The remainder of this section sets out four salient principles that have undergirded the debate and places them, not in competition, but in relationship with one another. The relationships between them are both mutual and ordered in that the principles ought not to be pursued in isolation from one another, while they also produce a ‘cascade effect’: Principle One takes precedence over principles Two, Three and Four, Principle Two takes precedence over Principles Three and Four, and so on. The principles may be applied with consistency with reference to ‘the moral spectrum’ that has, at one end, the ideal and at the other, the universally 81

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reprehensible. In the context of this debate, three points on this scale are used: the ‘normative’, to indicate an act that unambiguously reflects the principle under review, the ‘non-normative’, indicating an act that does not unambiguously reflect the principle but that may still be either acceptable or permissible because it does not contradict the principle and the ‘anti-normative’ to indicate an act that, in effect, contradicts the principle and, consequently is unacceptable. For example, if the principle were ‘Thou shalt not kill’, a normative application might be a policeman arresting an armed thief at gunpoint, having first issued a warning, a non-normative application may be represented by a policeman shooting and killing a thief in selfdefence after the thief drew a gun and aimed it at the officer while an ‘anti-normative’ application may be represented by a policeman ‘shooting first and asking questions afterwards’. Finally, before identifying the salient principles and suggesting an order of precedence, it is important to emphasise that what we are talking about are principles that ought to lie behind communal responsibility and legislative decisions, not principles that will necessarily be adhered to by individuals in other areas of life. For example, while the principle of protecting life will play an important part in most people’s lives, it may, in certain circumstances, be less important for some individuals than other principles such as altruism or honesty or, in the case of many religious people, loyalty to God or to their Faith. Individuals may choose to die rather than compromise their beliefs or they may choose to risk their lives in undertaking work in hazardous conditions in order to provide for their families or to care for others. Individual choices like these are subject to individual conscience and, within limits that prevent such choices from harming others, they cannot be legislated for. What we are discussing in the context of assisted suicide, however, are principles that ought to be binding for society as a whole, that underpin legislation and that are communally applicable. Few people, if any, have argued during the course of the debate that there ought to be no regulation with regard to assisted suicide, or that it is not a matter of communal as well as of individual concern. By definition, assisted suicide involves more than one person and while society does not insist in regulating all aspects of individuals’ relationships it does, rightly, intervene in situations where relational actions have the potential for causing harm. The law now, correctly, recognises such evils as marital rape and domestic violence; actions that were once thought to lie outside the remit of legislation. In this context, the onus is very clearly on the person who wishes to argue that assisted suicide ought to be free from all regulation to demonstrate precisely and convincingly why this ought to be so. In the absence of such a convincing argument we shall continue to explore the grounds for principled legislation. What then are the salient principles that have undergirded the debate on assisted suicide and what ought to be their order of precedence? In the language of the debate, so far, they are: protection of life, protection of the vulnerable, societal responsibility and individual autonomy. For reasons that will be outlined below, these may be better stated for the future development of the debate as the principles of affirming life, caring for the vulnerable, building community and respecting individuals. While few people will object to these four guiding principles, the proposed order of precedence is more controversial. The rationale behind this suggested order ought, however, to become clearer as we look at each of the principles in turn.

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Affirming Life It is tempting to say that it is simply self-evident that the principle of affirming life, universally supported by all participants in the debate, ought to be the primary principle undergirding this and many other areas of ethical concern. After all, human rights legislation as well as much of our criminal code is based on the concept of the right to life, which, as we have noted, the European Court has confirmed, does not include within it the right to die. Other principles are, of course, important, but unless we agree that affirming life is the primary principle, other principles will lose much of their potency. It is important to have freedom of choice, within agreed limits, but unless we are guaranteed that the state and its agents will act to safeguard our lives as we make our choices, such freedom is an illusion. To care for the vulnerable is an important principle, but the vulnerable will be no less vulnerable if that care does not extend to protecting their lives. Building a cohesive community is a crucial part of developing a civilised society, but that society will not be civilised if the lives of its citizens are not affirmed. Often this principle is phrased in terms of rights. Legally, this is essential since governments and their agents have a responsibility to respect, protect and promote all rights enshrined in legislation. The legal concept has to be sufficiently specific to enable a determination of whether or not the state has upheld it. This is why it is inaccurate to say that people have a right to commit suicide. The law permits suicide; it does not grant a right to suicide. If it did, the government would have a responsibility to promote this right; something that would clearly run counter to its widely accepted suicide-intervention strategy. The principle of affirming life, although it is fully supportive of the right to life, is a broader concept. It also includes the concept of individual personal value, the idea that every life is worth living and that there are essential elements in life such as relationships, nurture and care that cannot easily or adequately be covered by the legal language of rights. Contributors to the debate have also tended to speak of ‘protecting life’, but while this too is laudable, it approaches the issue in a ‘negative’ manner. Affirming life will include protection, but it will go much further than that, suggesting even that life is something to be embraced, enjoyed and celebrated. All of life, however, is not readily enjoyable, nor can everything in life be celebrated. In times of trouble, distress and illness, what might it mean to affirm life? In the context of the debate on assisted suicide this is where the reality of ‘affirming life’ has to be given practical expression. There is, of course, no single answer to this question, but the range of answers that we may give can be viewed against our ‘moral spectrum’ to see whether they are normative, non-normative or anti-normative expressions of the principle. In the face of illness and suffering, offering love, care and support are clearly normative actions. Attempting to alleviate distress, pain and suffering by providing medical, nursing, psychological and spiritual care is, equally, in keeping with the principle of affirming life. Acting, as we instinctively do, to try to intervene positively to minimise the risk of suicide is, clearly, a life-affirming approach. We are right to support various suicide interventions initiatives aimed, especially, at countering youth suicide. These reactions to suffering, and others like them, are supported by almost all contributors to the debate. The truly pertinent issue is whether other dissimilar reactions may also be seen as life affirming.

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Enabling someone to die well, within the context of a terminal illness, can also be life affirming. This ‘enablement’ may include the administration of drugs, withholding drugs or other treatment or withdrawing treatment in the interests of the patient’s wellbeing. Dying is a natural and inevitable part of living and a ‘good death’ can, in itself, be an affirmation of life. What, however, it may be asked, is a good death? At one end of the spectrum we can see that a person who has lived a fulfilled life, dying in a peaceful manner, surrounded by loving family members, having had the opportunity to make farewells and to conclude life’s business, will, by any standards have a good death. At the other end of the spectrum, someone dying alone and in pain, with little to think of but bitter memories of a life filled with thwarted aspirations and lost opportunities, cannot be seen as having a good death. Death, when it comes, might indeed be a relief, but the dying will have been anything but good. Dying is the last part of living and, as such, it is essential that as much of the process of dying as possible ought to be seen as living. ‘Living well; dying well’ is the goal of health and social care, encompassing everything from the cradle to the grave, embracing not only individuals but also their families, friends and carers. At the end of life, this is the goal of palliative care and it can only be viewed as being lifeaffirming. Can a decision to end one’s life ever be life affirming? Those who support a change in the law to permit assisted suicide would argue that such can be the case, but the concept is fraught with difficulties. While it is entirely understandable that people will wish not to suffer a bad death, there are ways of ensuring this other than through suicide. It is true that much work needs to be done to enable this to be universally the case, but a decision to end one’s life because one is not being properly cared for can scarcely be viewed as being life-affirming. By definition, suicide represents a premature and deliberate end to life, brought about by free choice through utilising active means to ensure the desired end. It is manifestly different from an individual choosing to allow the natural dying process to take its course by rejecting further medical intervention. In such a case death is not premature; life, rather, has not been prolonged. While writing and reading about life and death in this way can appear to be an exercise in sophistry, in the context of real life, there is little difficulty in untangling these issues. There are few individuals who do not instinctively recognise the difference between taking their own lives and allowing death to take them, regardless of the circumstances in which they may die. Suicide always occurs when there is more living to be done, more of life to be had. A person may be fed up with life, but this does not constitute a terminal illness. There may be difficulties to face, burdens to be borne and even pain and distress to be managed, but there is more of life to be lived; more of life to be affirmed. Some proponents of assisted suicide will argue that what has just been said relies on the idea that a ‘natural’ death has somehow been imbued with a moral authority that cannot be questioned. This is to misunderstand the argument. It is not the ‘naturalness’ or ‘unnaturalness’ of dying that is the point since any medical intervention aimed either at managing symptoms or at prolonging life may be said to be ‘unnatural’. The point at issue is the affirmation of life. Life comes to us as a package deal, whether we believe life to be a gift from God or simply a ‘creation’ by 84

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our parents. We don’t self-start our lives and we cannot, through an exercise of willpower, turn them off. Affirming life means that we make the best of what we have been given and this includes making the best of whatever time we may have to live. We acknowledge that we must die as part of the process of living and we make all sorts of decisions throughout our lives with regard to balancing longevity with quality of living. We may decide that over-indulging in certain foods or in alcohol is a reasonable counter-balance to a few more years longevity, but we also recognise that it is a tragedy when individuals lose sight altogether of the concept of balance as they propel themselves towards an untimely death or chronic illness through, for example, drug abuse. Affirming life does contain within it the idea of balancing quality and quantity of life and so it is reasonable for some people to refuse further treatment towards the end of their lives. What cannot be seen as life affirming, however understandable it might be, is an action that simply says, ‘I have had enough; I refuse to live any further even though there is more living to be done’. Such a statement of despair may be understandable in certain circumstances but, in what sense, can it be life affirming? To say that we prefer to end our lives rather than to live them out, supported by personal, social and medical care may, indeed, be a preferred or even an attractive option for some, but it cannot be seen as being life affirming. To argue, as some do, that a life may only be affirmed if it attains, and is sustained at, a certain quality level is not to affirm life, but to affirm something lesser: life-in-our-terms. Of course, in the darkness of suffering and despair, anyone can come to the conclusion that life is not worth living, but to act on this conclusion is not to affirm life, but to deny it. What then, of the person who chooses to end his or her life? Where does this action fit in the moral spectrum as we view the principle of affirming life? At the very least, suicide cannot be seen as a normative expression of affirming life. To argue otherwise is to turn the concept on its head. Nonetheless, we can understand why some individuals choose this pathway in the face of pain, suffering or distress. As long as their actions are understood as being reactions to overwhelming negative experiences of life (including a negative experience of the process of dying) then it may be argued that their actions are non-normative, but not necessarily antinormative. Those suicides that are reactions to particular circumstances and not ‘statements’ against life are not attacks on the principle of affirming life and we recognise that, as acts of despair, they do not threaten society’s adherence to the principle of affirming life. Acts of suicide, however, that are a means towards an end, rather than a reaction to suffering and distress, are quite different. To effect suicide as a political statement, for example, or to die as part of a cult suicide pact, is to make a deliberate choice, if freely taken, that we can dispose of life in pursuit of other goals. Such an attitude not only fails to be life affirming, but it is the antithesis of it. For another person to agree that an individual’s life is no longer worth continuing or affirming by assisting a suicide is also the antithesis of the principle of affirming life and it would be a grave matter indeed for society to enshrine such a concept in law. Again, it is one thing for a family member to agree that life-prolonging treatment ought to be discontinued, but it is another matter indeed for a family member to conclude that someone else’s life ought to be brought to a premature end and then to act on this conclusion. Pressures engendered by love may drive some people to concur with a loved one’s wish to be given assistance in ending life, but society cannot afford to enshrine such actions in law. To act in such a way may be seen as respecting the wishes and desires of someone that is deeply loved, but it cannot be seen as being life-affirming. If we are prepared to allow latitude to view some suicides as nonnormative acts, acts of assisted suicide can only be anti-normative responses to the 85

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principle of affirming life and, understandable as some such actions may be, they ought to remain prohibited by law.

Caring for the Vulnerable If affirming life lies at the heart of a civilised society, then caring for the vulnerable is a definitive hallmark of such a society. As with the principle of affirming life, this principle is often phrased in terms of protection. While the concept of protecting the vulnerable is encompassed by the principle of caring for the vulnerable, care goes much further than simple protection. It includes ‘positive’ actions such as providing support and comfort as well as ‘negative’ actions designed to protect individuals from harm. As such, there are few, if any, contributors to the debate on assisted suicide who do not place a strong emphasis on caring for vulnerable people. It is easy to see, at a positive level, how providing love, support and appropriate medicine and treatment is a normative way of expressing care for vulnerable people. Some individuals who are disabled, those suffering from certain physical or mental illnesses and conditions, some elderly people and those with terminal illnesses are in need of specialised care and it ought to be the duty and privilege of family, friends and society in general to ensure that such care is provided. The fact that some people are not adequately cared for is a stain on our society and an indication that changes in the accessibility of care provision need to be made, but this does not deflect from an acceptance that caring for the vulnerable is a key principle that ought to be embraced. Caring for the vulnerable has, however, a negative as well as a positive aspect. Sadly, not all families are loving and caring; child abuse, domestic violence and elder abuse are all too prevalent and represent problems that are too great to ignore. Legislation continues to be necessary to protect individuals from neglect and abuse. Even with legislation in place, it is not possible to protect all vulnerable people but such legislation and its enforcement does succeed in protecting many people and it acts as some sort of restraint on would-be abusers in many other cases. In the context of assisted suicide, it is easy to see that current legislation offers a degree of protection to vulnerable people. It is not, of course, possible to quantify how many people might be at risk were the current protection of the law removed. What is certain, given that in excess of a third of a million elderly people are abused by family members each year in England, is that there are grounds for real and genuine concern. To remove such protection from these, and other people who may be vulnerable in a range of ways as a result of any change in the law on assisted suicide, ought only to be countenanced if it can be demonstrated that other vulnerable people are currently at equal or greater risk because of current legislation. Those people who seek assistance in ending their lives are also vulnerable, even though some of them may not wish to view themselves in this light. The very fact that they are, or will be, dependent upon others to help them bring an end to their lives demonstrates their very vulnerability. Their vulnerability, however, is very different from the vulnerability of those whom the law currently protects. They are vulnerable to distress, to having to face pain and symptom management and they are vulnerable to frustration and, at times, anger at their situation. They are not, though, vulnerable to having pressure put on them that will endanger their lives; indeed, the very opposite is the case. It is at this point that the cascade effect of our principles must 86

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come into play. Affirming the lives of vulnerable people, valuing them and protecting them against harm, including the harm of their lives being endangered, must take precedence over concerns that denying assisted suicide will cause additional distress to those who wish to be helped to end their lives. We simply cannot afford to take risks with the lives of vulnerable people, seeking statistical proof of abuse from jurisdictions that permit assisted suicide, when we have more than abundant evidence that vulnerable people are often the victims of familial abuse in the UK. One person pressured into a request for assisted suicide that is the direct or, more probably, the indirect result of neglect or abuse is simply one too many. This is too great a risk to take in order to allow greater freedom of choice for those who wish to bring their lives to an end and who require others to assist them. This may seem to be a rather stark and uncompromising way of stating the case, but it is important to remember that abuse of vulnerable people is a harsh, nasty and despicable thing. To put it bluntly, it will be too late to acknowledge after the event the unintended consequence of a change in the law that results in a vulnerable person having his or her life endangered. When viewed in this light, any change in the law on assisted suicide would not only fail to be a normative expression of the principle of caring for the vulnerable, it would be anti-normative since it takes unnecessary and unacceptable risks with the lives and safety of vulnerable people.

Building Community It will be clear from the above, that if our society is to be one in which life is to be affirmed and the vulnerable are to be cared for, then individual freedom must come second to these aims and goals being achieved. Many who by temperament and character tend to favour an individualist approach to life, nonetheless accept that our freedom to act as individuals must, at times, be curbed in the interests of genuine community concerns. Of course, a community or society ought not to have anything like absolute rights over the lives of its members; there are too many warnings from history to allow us to consider even a hint of totalitarianism. Indeed, maximum individual freedom ought to be enjoyed by members of society, commensurate with a cohesive society existing that truly affirms life and that cares for the vulnerable. In such a society, building community and respecting individuals are not mutually contradictory goals; they may, rather, be seen as complementing one another. Given the choice, however, of placing respect for individual freedom above building a lifeaffirming, caring and cohesive community, building community must come out on top every time. There simply is no way of ensuring that the society that we and others live in will have the characteristics that we have outlined other than through individual freedom being restricted in limited ways to enable the goal of a fair and humane society being built. It is always tempting to think that we live in an enlightened age or as part of an enlightened society that requires little regulation to ensure that every individual’s life is affirmed and that the vulnerable are properly cared for. Even a cursory glance at history, however, shows us that it is foolish in the extreme to put our faith in the inevitable goodness of human nature. One in every twenty deaths in the twentieth century was caused by human violence; one in fifty as a result of avoidable starvation. Self-interest is a powerful motivating force and history indicates that once societal restraints are slackened or removed in crucial areas, there are many people who will act without very much self-restraint. While it would be preferable that such is not the case, it seems that a caring society cannot be attained without regulation.

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In the context of assisted suicide, this means that any legislation that undermines the affirmation of life or that risks full and proper care of the vulnerable has to be viewed as being anti-normative. From what has been said already, it is clear that current legislation provides, at least, a framework for achieving these societal goals; any change in legislation would act towards dismantling this framework. Legislation cannot guarantee that a properly cohesive society is built, but without it such a goal will become impossible to achieve.

Respect for the Individual It will be inimical to many that respect for the individual should be the fourth of our principles and not the first, but, as has been suggested above, this has to be viewed in context. Respect for the individual is an essential principle for society to espouse. Individual rights and freedoms have been won over centuries and through centuries of misery when powerful groups and states have treated individuals with disdain, cruelty and neglect. There can be no question of rolling back these hard-won freedoms, but individual freedom can never be completely untrammelled. The only restrictions on individual autonomy that are being suggested are those restrictions that enable a cohesive society to be life-affirming and that enable it to care for the vulnerable. Frankly, such restrictions ought to be welcomed by all and not seen as burdens to be discarded at the first opportunity. In the context of assisted suicide this means that while it is understandable that an individual may wish to end his or her life and that he or she may ask for assistance in doing so, a third party ought not to be permitted the freedom to acquiesce to this request. As we pointed out earlier, individuals have the freedom to end their own lives; it is not their autonomy but the autonomy of others that is being necessarily restricted. It may indeed be correct to argue that it would be anti-normative to the principle of respect for the individual to criminalise (or re-criminalise) suicide, but it would be equally anti-normative to the principles of affirming life, caring for the vulnerable and building community to permit others the freedom to assist in taking the life of another individual regardless of how much that individual may wish such assistance. Respecting the individual will include respecting an individual’s wishes with regard to health care decisions. Individuals ought to have the right to decline as well as to request life-prolonging and life-enhancing treatment. We have already seen that declining life-prolonging treatment is not the same as assisted suicide and it ought to be the individual patient’s choice whether or not to continue with any given course of treatment. Of course, there will be times when others will disagree with certain decisions and they may regret the choices that their loved ones make, but it would be anti-normative to the principle of respecting individuals if the right to make such choices were removed from them. The principles of affirming life, caring for the vulnerable and building community are not negated by any of the health choices currently available to people. It is true that respecting individual choice may make us feel, at times, frustrated and helpless as people make poor choices. The person who chooses to continue to smoke or to drink to excess makes choices that will, in all probability, lead to premature death and, almost certainly, lead to chronic health problems. By encouraging people to quit smoking, for example, society recognises that every individual’s life is too 88

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important for us simply to sit and watch while people choose to damage their health. At the same time the principle of respecting individual choice is so important that we, rightly, do not coerce people into a particular course of action. Just how much persuasion it is reasonable for society to apply before it becomes pressure that, in turn, becomes coercion is a matter for ongoing debate with civil libertarians, correctly holding society to account for its laws and policies.

What is Christian about this? While the principles outlined above may be endorsed and supported by all, Christians will look to core theological beliefs to find foundation reasons for upholding them. Briefly, the main theological grounds for advocating these principles are: Affirming Life

The biblical teaching that every human being is made in the image of God places immeasurable importance and significance on every human life. We are not our own, but rather we are expressions of God’s loving, creative essence and, as such, every person and every life has an importance and an innate dignity that abides within us but which has its source beyond us. We are God’s creation and it is he, the Creator, who has invested us with significance. Life is a gift from God and every person is the beneficiary of that gift. Affirming life is the only response that we can make if we are to respond with gratitude to God the Giver of Life. Caring for the Vulnerable

The Scriptures are full of commands and encouragement to care for the oppressed, the downtrodden and the vulnerable. In some of his most striking and startling teachings, recorded in Matthew 25, Jesus stated simply that as we act towards the vulnerable we act towards him. He is the bereaved mother, he is the depressed young man and he is the elderly, abused person who is made to feel that his life has become worthless. True compassion means taking the side of the oppressed, the lonely and the vulnerable and is a hallmark of genuine Christian faith. Building Community

In contrast to the rampant individualism evident today, the biblical model for human living is one that emphasises community and relationship. Christians are not to live solitary, self-occupied lives but are part of the Body of Christ. We are also enjoined both by Jesus and by the apostle Paul to act as responsible citizens. Our true citizenship may be in heaven but we are to be salt and light in the world, bringing justice and demonstrating God’s love within society. Respect for the Individual

Jesus did not coerce people to follow him and he did not force obedience or allegiance from anyone. As members of the Body of Christ, we are to act as Jesus acted and so we must respect every individual and encourage each person to live a life that demonstrates genuine integrity, not merely paying lip-service to the beliefs and opinions of others. While respect for individuals ought not to lead to advocating selfish and untrammelled freedom of action, it ought to lead to advocating the maximum degree of individual freedom consistent with the other principles outlined above.

Conclusion As outlined above, the principles that undergird the debate on assisted suicide are fully in keeping with Christian theology and ethics as well as being accessible to others who do not follow the Christian Faith. The application of these principles, as suggested above, may find favour or may be rejected by those who consider them, but 89

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they do present a Christian way in which to contribute to the ongoing development of the debate on assisted suicide.

Intellectual property & Copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2011. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Epilogue: ‘Lord, now lettest thou thy servant depart in peace . . . for mine eyes have seen thy salvation’ Rt Revd Dr Christopher Cocksworth

1

Why this sort of conference on assisted suicide? There are many conferences on and publications about the complex issue of assisted suicide. The conference from which this publication emerged was rather special, at least for me. I am used to travelling to conferences; this one was in my own home. Generally, the conferences I attend are quite large gatherings; this one was deliberately small, limited by the number of people I could fit into my dining room. This made for a conference in the original sense of the word: a conferring on matters of significance where all the arts of conversation – careful, courteous listening and informed speaking – are put to good use. I am used to signing up for a conference in the usual way and then scanning the list of delegates to discover who else will be there; on this occasion I was able to handpick people to attend from a number of disciplines and a range of experience who would bring different perspectives to bear on our discussion: lawyers, theologians and social policy advisers, palliative care experts, pain consultants and hospice chaplains. I am extremely grateful to all those who accepted the invitation to help a bishop think about a matter of great ethical significance. And that was how the invitation was couched – please come and help stimulate and shape my thinking, speaking, writing, praying, caring, leading (and all the other things a bishop is supposed to do) over an issue of, quite literally, life and death importance. I hope that those who attended found the conference helpful, personally and professionally, and that they found it as stimulating as I did to engage with people from across the disciplines. I found the discussions between lawyers and theologians fascinating and penetrating. I was moved by the depth of the encounter with human suffering that specialists in palliative care and pain management face on a daily basis, and I was intrigued by the different perspectives they brought to our table of conversation. Our deliberations were held together and steered along by Mark Bratton whose immersion in a number of the modes of life represented around the table – theology, law, medical ethics, pastoral care – made him an excellent pilot. In the background, and sometimes in the foreground, was Donald, one of Raj Munglani’s patients suffering extreme pain and degradation of life. Donald graciously allowed his circumstances to be a reality check to everything that we considered. I am grateful to Donald for the way he helped to ground our discussions, to Raj for setting his case before us and insisting that we do not forget the real dilemmas with which the Donalds of our suffering world confront us, to Mark for his good offices and to all of those who took part in this conference in its rather unusual setting.

1

Bishop of Coventry.


Was anything clarified? I confess that, although I had tried to keep abreast of the issues around assisted suicide, there was still much that was unclear in my mind. So I was grateful to have a number of matters clarified. There are far too many to list but among them were some technical definitions, such as the difference between Voluntary Assisted Euthanasia (VAE) and Patient Assisted Suicide (PAS), and that assisted dying and assisted suicide are not the same thing. There were legal distinctions, for example, between acts (where something is done) and omissions (where something is not done), that were important to distinguish and legal realities, such as the law of double effect, which have a bearing on moral judgements that needed clear explanation. Talking of moral judgements, it was helpful to see that while much of the ethical discussion around assisted suicide concerns the autonomy of the person who wants to die, and how free he or she should be to exercise it, the attention of ethicists (and certainly of law and social policymakers) must be on the freedom or otherwise of the person – be they friend, relative or physician – who is being asked to assist that (premature) death. There were also significant empirical clarifications that helped to clear the ground of our conversation. For example, the moral, familial and professional chaos that is predicted by those who are against any change in the law over assisted suicide has not happened in those places where the law is more permissive. Statistics showing the impact of improved health and health care on longevity, including the number of years people may expect to persist in conditions of very poor health, were salutary to hear. Even more so were the frightening (I use the word advisedly) figures for the abuse of the elderly in our society, much of it by those who are regarded as loved ones. More encouragingly, it was valuable to learn more about the practice of palliative care and to see how the contemporary practices of caring for the dying and, yes, assisting them as painlessly as possible along the way of dying, are still different from the practice of assisted suicide and the principles behind it.

Did any common ground emerge? We probably did not need a conference to tell us that there are no easy answers – this, at least, was an area of agreement between all the participants from the beginning. Indeed, as far as I could observe, as the conference progressed the respect for different positions on the ethical propriety of assisted suicide increased. We soon took the point that any responsible contributor to the debate on these matters takes a principled, rather than purely pragmatic, position where ethical values count. Much will depend on the ordering and weighting of those principles, and that is where the difference often lies. We also saw very clearly, and readily agreed, that those with responsible, principled positions who come to different conclusions and advise different policies are motivated largely by compassion. They want people to be able to die well and for the society in which they live to become more compassionate towards them. Having said that, we also recognised that the level of compassion, as evidenced by the variable standard of professional palliative care and of familial, neighbourly care in our present society, is worryingly mixed. We agreed that, as complex as the matter is and as nuanced as the arguments are, there remain some fine but discernible lines on either side of which we found ourselves arranged.

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Where did the conference leave me? Where I ended up was in the ancient Temple of Jerusalem at the beginning of Jesus’ life. His parents had taken their young child to the temple for a set of traditional ceremonies that followed the birth of the child in Jewish society. Luke tells the story with his customary skill and introduces us to two somewhat eccentric characters who had been patiently waiting in the temple precincts for signs of ‘the consolation of Israel’ (see ‘Luke’, 2.22–38). We are told that one of them, Anna, was of a great age, 93 in fact. The age of the other, Simeon, is not revealed but the implication of the text and certainly the early tradition of the church, is that he too is elderly. That is definitely how Rembrandt depicted him in a gorgeous painting full of soft golds in which Simeon gives every impression of what a theologian friend of mine calls ‘sanctified senility’. Luke’s record of Simeon’s words as he set his eyes on the Christ child and gathered him into his arms has become enshrined in the liturgies of the Church, finding a particularly sublime form in the Evensong of the Church of England’s Book of Common Prayer. It is in this form that I first encountered Simeon’s Nunc Dimittis: LORD, now lettest thou thy servant depart in peace: according to thy word. For mine eyes have seen: thy salvation; Which thou hast prepared: before the face of all people; To be a light to lighten the Gentiles: and to be the glory of thy people Israel. It is interesting that Terry Pratchett alluded to Simeon’s song when he said some time ago that all he is asking for is to be allowed to ‘depart in peace’. Simeon would certainly have met the approval of the Falconer Commissioners who seek to promote an ‘open discussion about death and dying’. He is completely unreserved in speaking about his death and very open about his readiness to die. At the same time, though, he has some angles on death and dying, or rather, on life and living, that might just help us to see more clearly – and seeing is a very Simeon sort of theme. ‘For mine eyes have seen’, he sings; and everything else is different in the light of that seeing. More about that later. First, let’s be clear that Simeon is very comfortable with a recognition fundamental to the Jewish wisdom tradition, that there is, in the words of ‘the Teacher’, ‘a time to be born’ (and thus a time to live) and ‘a time to die’ (and thus to prepare to die) (see ‘Ecclesiastes’, 3.2). Simeon felt that now, for him, that time had come: ‘Now Lord, lettest thou thy servant depart in peace.’ Why now, though? Why did this curious man who had been living this apparently unproductive, seemingly futile old age decide that now was the time? It was because he believed that now he had fulfilled the purpose that had been given to him. That which God had promised him had been fulfilled: ‘For mine eyes have seen thy salvation.’ His life’s work was done. He had completed the life that he had been given: to wait for the consolation of Israel. If medical technology had suddenly advanced I doubt whether Simeon – or Anna – would have welcomed attempts to extend their lives artificially. I think they would have been ready to work with the sort of end-of-life care plans that Carol Tallon 93 Journal of Observational Pain Medicine – Volume 1, Number 1 (2012) ISSN 2047-0800


describes so helpfully, completing documents such as ADRT’s (Advance Decisions to Refuse Treatment) and PPC’s (Preferred Priorities of Care plans). When they reached the discernibly dying phase, I do not imagine they would have raged, with Dylan Thomas ‘against the dying of the light’, but would have been glad of a care pathway that would take them gently and painlessly into the fuller light of God’s presence. However, none of this is to say that Simeon and Anna would have made much sense of modern instincts for the exercise of personal autonomy over the ending of one’s life. What counts for Simeon is not a law that he chooses (which is what autonomy literally means) but the law – the structure for life and for its decisions that serves the good of the whole community and places each person into a matrix for living designed by the loving of God who can see the whole pattern of existence and how each part relates to the other. Right at the heart of this sort of law or structure for life was an assumption that life itself is a gift from God – a gift that we are invited to receive and have no right to reject – and that it is a gift that comes with a purpose. Simeon was clear about his purpose: it was to see the Lord’s Messiah. Anna too had been waiting for decades for God’s plan for her life to be fulfilled. Even though Simeon now felt that his work was done and that he was ready to depart in peace, he would not have conceived of taking his life into his own hands. His life remained in God’s hands and his readiness to die remained a prayer not an action. So at the end of the conference I found myself on the side of the line that, while recognising that life is not to be extended, as it were, post-maturely, life is also not to be ended prematurely. I recognise that discerning when the time has come – the time when, if you will, God is withdrawing the gift of life in order to give a fuller life – is clearly a complex process for health professionals but there does seem to me to be a philosophical line that I cannot bring myself to cross. I suspect it is somewhere in the distinction between assisted suicide and assisted death. For all the Falconer Commission’s talk of assisted death, its recommendation about permitting assistance for those who appear to be 12 months away from their death suggests to me that it is really talking about assisted suicide. Talking very personally, I hope that when the final stages of my dying have come physicians will not obstruct its course but will work with these natural processes to ease me out of this life with the minimum of discomfort. Equally, I hope that I – and those who care for me – will not reach out for my death before its hour has actually come and before I have fulfilled my responsibilities to others and served the purpose for which life was given to me.

Seeing more clearly So that is where the conference left me. Since then I have found myself musing further on Simeon and Anna and what more we might learn from them. My ruminations have revolved around the theme of seeing which, as we have seen, figures prominently in the Simeon story. They are focused around a number of questions. How do we see Simeon and Anna? As old people, confused and possibly deluded, dependent on others, or as characters with a unique role in the history of humanity to be fulfilled at a particular point very late in their lives? How do Simeon and Anna see themselves? As autonomous selves, with absolute rights over their own destiny, or as servants of a higher purpose, rooted in the story of his people? How did the people of the city of Jerusalem see Simeon and Anna? As untidy relics of the past cluttering up the busy activity of contemporary Jerusalem, or as bearers of a strange wisdom and signs of a different sort of world? Indeed, where were Simeon and Anna seen? In the public space of a large city, or in the temple, the place of refuge and sanctuary where the old and ill, the senile and insane would find safety? Who does 94 Journal of Observational Pain Medicine – Volume 1, Number 1 (2012) ISSN 2047-0800


Simeon – and who do we – see in his arms? A collection of chemicals that has inexplicably gained consciousness, or, in the words of an ancient piece of JewishChristian literature, as ‘the whole fullness of deity dwelling bodily’ – the eternal God who, by assuming human form, has given infinite worth to each human life and who, from controversial conception to ignoble birth to dreadful death, has entered into the experience of the most vulnerable in society, many of whom so easily become the victims of an impatient world? And as he held this child, this one he called ‘the Lord’s Messiah’, did Simeon somehow see the new world for which he had been waiting so long begin to take shape, the world imagined in the distant past of Isaiah’s messianic prophecies: ‘No more shall there be in it an infant that lives but a few days, or an old person who does not live out a lifetime; for one who dies at a hundred years will be considered a youth, and one who falls short of a hundred will be considered accursed’? (See ‘Isaiah’, 65.17–25.) I must stop now. This epilogue has become more of a sermon and sermons are really for other places. But I make no excuses for drawing on the story of Simeon not just because, like many others in the present and the past, I find that the ancient texts of Christian faith have an uncanny capacity for helping us to see modern dilemmas differently but also – and simply – because human life is made immeasurably richer by the wisdom of the old and the perspective of the frail.

Intellectual property & copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2012. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Survey of buprenorphine transdermal matrix (BuTrans) use in chronic pain service 1

Dr Thanan Elalingam MB BS 2 Dr Rajib Dutta MB BS DA FRCA FFPMRCA 3 Dr Rose Block MBChB Edinb FRCA FFPMRCA

Abstract Introduction: BuTrans transdermal matrix patch is a low-dose slow-release preparation of a strong opioid licensed for use in chronic non-malignant pain (CNMP). We plan to include it in Guidelines for the Management of CNMP for primary care in Surrey. We conducted a survey to assess its current usage as well as to audit benefits and side effects. Method: Patients attending the trust’s chronic pain outpatient clinics and procedure lists were asked to complete a questionnaire, which was returned anonymously in September to November 2010. Results: 97 (34 male, 63 female) surveys with complete data were collected, of which 22 (5 males, 17 females) patients were recommended BuTrans. The indication for recommending BuTrans was CNMP in 60% and side effects of oral medications in 50% of patients. Of those recommended BuTrans, 9% did not try it, 27% ceased use and 64% continue using it. The proportion of patients using BuTrans who reported improved or much-improved pain intensity was 59%, pain distress was 35% and dayto-day activity was 41%. The average reduction in pain was 34%. 6/22 (27%) patients ceased BuTrans due to side effects: skin irritation 3/22 (13%); nausea/vomiting 2/22 (9%); somnolence 1/22 (4.5%). Discussion: The transdermal route of administration results in predictable steady state plasma concentrations of buprenorphine, which may offer advantages to patients with CNMP over the peaks and troughs of oral medications such as codeine. It also helped patients with CNMP if oral analgesics were not tolerated. Two-thirds of patients using BuTrans achieved improved or much-improved pain intensity, but the number reporting improved or much-improved distress or daily activity was lower. Keywords BuTrans, transdermal, buprenorphine, chronic pain

Introduction BuTrans transdermal matrix patch is a low-dose slow-release transdermal preparation of a strong opioid licensed for use in chronic non-malignant pain (CNMP). We plan to include it in Guidelines for the Management of Chronic Non-

1

Specialist Registrar in Anaesthetics and Intensive Care, Prince of Wales Hospital, Barker Street, Randwick NSW 2031, Australia. 2 Locum Consultant in Pain Medicine and Anaesthetics, West Hertfordshire Hospitals NHS Trust. 3 Consultant in Pain Management, Ashford and St Peter’s NHS Foundation Trust. Journal of Observational Pain Medicine – Volume 1, Number 1 (2012) ISSN 2047-0800


Malignant Pain for primary care in Surrey. We conducted a survey to assess its current usage as well as to audit benefits and side effects.

Methods Patients attending the trust’s chronic pain outpatient clinics and procedure lists were asked to complete a questionnaire, which was returned anonymously in September to November 2010.

Results 97 (34 male, 63 female) surveys with complete data were collected of which 22 (5 males, 17 females) patients were recommended BuTrans. The mean age of all patients was 59. The indication for recommending BuTrans was CNMP in 60% and side effects of oral medications in 50% of patients. Of those recommended BuTrans, 9% did not try it, 27% ceased use and 64% continued using it. Figure 1 – Patients recommended BuTrans

100 90 80 70 60 Male (%)

% 50

Female (%) Both (%)

40 30 20 10 0 Using

Did not try

Ceased

Total

The proportion of patients using BuTrans who reported improved or much-improved pain intensity was 59%, pain distress was 35% and day-to-day activity was 41%. Pain reduction of 0–20% was reported in 29% of patients, 30% reduction in 12%, 40% reduction in 29% and ≥ 50% in 29% of patients.

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Figure 2 – Effect of BuTrans

70 60 50 40 % 30 20 10 0

Much worse Worse Same Improved Much improved

Effect on Pain Intensity

Effect on Pain Distress

Effect on day-today activity

Figure 3 – Treatment relief from pain

30 % of Patients

25 20 15 10 5 0 0-20

30

40

≥50

% Pain Relief

In our survey, of the 22 users of BuTrans the most common side effects were skin irritation, dizziness and nausea followed by constipation and confusion. In this patient population, 6/22 (27%) patients ceased BuTrans due to side effects, which included: skin irritation 3/22 (13%); nausea and/or vomiting 2/22 (9%); and somnolence 1/22 (4.5%).

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Figure 4 – BuTrans side effects

45 40

% Patients

35 30 25 20 15 10 5 0 C onf usion

Diz z iness

Nausea

C onstipation

S k in i rritation

Figure 5 – Reason ceased BuTrans

45 40 35

% Patients

30 25 20 15 10 5 0 Skin Irritation

N & or V

Sleepiness

Other

N & or V: Nausea and/or vomiting

Table 1 – Duration of use of BuTrans in patients that ceased use

Sex Male Female Female Female Female Female

99

Length of BuTrans use (months)

1 4 10 12 4 Unknown

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The average time patients had used BuTrans prior to ceasing its use was 6.2 months. One of the five female patients that had ceased use had incomplete data on duration of use, so was not included in this calculation. This shows 3/5 (60%) of patients used it for less than six months and 2/5 (40%) tolerated use for ≥ six months. However, this was not one of the aspects investigated in our survey but would be useful to investigate in further studies. In addition, data on patients that continue to use BuTrans is incomplete, so has also not been included in this analysis. 1,2

Table 2 – Relative strength of BuTrans

Tramadol Codeine Dihydrocodeine

BuTrans 5 µg/h

BuTrans 10 µg/h

BuTrans 20 µg/h

≤50 mg/day ~30–60 mg/day ~60 mg/day

50–100 mg/day ~60–120 mg/day ~60–120 mg/day

100–150 mg/day ~120–180 mg/day ~120–180 mg/day

The cost of buprenorphine compared with routinely used medications for the control of CNMP in the outpatients’ setting is given in the table below on relative cost. Calculations are based on BuTrans 10 µg/h equivalent to 120 mg of dihydrocodeine or codeine with costs derived from the British National Formulary. The contribution of paracetamol in co-codamol and co-dydramol in determining equivalent dose with BuTrans has not been included. Table 3 – Relative cost of BuTrans

BuTrans dose £ BuTrans for 28 days £ Co-codamol (15/500) £ Co-codamol (30/500) £ Co-dydramol (30/500)

5 µg/h 17.60 9.24 2.42 6.53

10 µg/h 31.38 18.48 4.85 13.06

15 µg/h 48.98 27.72 7.27 19.59

20 µg/h 57.16 36.96 9.70 26.12

Co-codamol (15/500) 100 tablet pack = £8.25, co-codamol (30/500) 100 tablet pack = £4.33 and co-dydramol (30/500) 56 tablet pack = £6.53

The relative cost of BuTrans10 is £31.38 per month compared with £18.48 for cocodamol 15/500 eight tablets per day for one month. This demonstrates that BuTrans is about two to seven times more expensive than these common oral analgesics. Hence, any recommendation on its use must be shown to be beneficial to patient care as well as cost-effective by having a lower side-effect profile and thus fewer burdens from dealing with these complications.

Discussion Buprenorphine is 75–100 times more potent than morphine.3 It is a centrally acting partial mu agonist and a kappa and delta opioid receptor antagonist. It has a high affinity for the mu receptor and a lower intrinsic activity than a full mu agonist. Buprenorphine also possesses an anti-hyperalgesic effect4 relative to other mu receptor antagonists. BuTrans is a matrix patch that uses a drug layer of a semi-solid matrix5 containing a drug solution dispersed with a polymer pad in direct contact with the skin. The transdermal route of administration results in predictable steady state plasma concentrations, which offers advantages to patients with CNMP over the peak and troughs of oral medications. 100

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Buprenorphine given via the transdermal route has been shown to be useful in the treatment of severe non-cancer pain unresponsive to non-opioid analgesics and also in the treatment of chronic moderate to severe intensity pain. Buprenorphine has also been shown to be effective in controlling neuropathic pain. It has been found to decrease the need for rescue medications and increases the duration of pain-free sleep, and has also been shown to be well tolerated.6 Data suggests that patients with non-cancer pain can achieve satisfactory analgesia by using a constant dose of an opioid, most conveniently delivered via an oral slowrelease preparation or a transdermal patch.7 Also, a concern that steady-state exposure of opioid receptors to agonist leads to greater tolerance and dependence is not shown in studies of buprenorphine.8 In addition, buprenorphine has a welldefined ceiling effect for respiratory depression and respiratory rate rarely drops below ten breaths per minute (50% of baseline), and has also been reported to be less immunosuppressive than morphine.9 In a large retrospective cohort study in the UK,10 persistence with low-dose buprenorphine patches over six months was significantly higher than with codeine, dihydrocodeine and tramadol (28.9%, 22.4%, 24.4% and 23.8% respectively; p < 0.01). Persistence over 12 months also was significantly higher with low-dose buprenorphine compared with the other opioids (18.5%, 16.1%, 18% and 17.6%; p < 0.01). However, patients using buprenorphine had an increased incidence of constipation, dizziness, and nausea and vomiting compared with the other opioids. Buprenorphine can be used in patients with impaired renal function and chronic renal insufficiency, and in haemodialysis patients in whom its pharmacokinetics are unchanged.11 This is also confirmed in a study by Hand et al. that examined the effect of renal failure on buprenorphine pharmacokinetics12 where plasma levels were not affected. The pharmacokinetics of buprenorphine in patients with mild to moderate hepatic impairment have also been studied and found to be similar to healthy volunteers.13 However, as buprenorphine is metabolised by the liver it is recommended these patients should be monitored carefully and should not be used or with caution in patients with severe hepatic impairment.

Conclusions BuTrans offers benefits for patients with CNMP if oral analgesics are not tolerated but it is more expensive. Benefit is greatest for pain intensity; hence, a multidisciplinary approach including other modalities such as pain-management skills may be required to enhance benefits in pain distress and in daily activity. Conflict of interest disclosures

None declared.

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References 1 Twycross, R. et al. Palliative Care Formulary, 2nd edn (Oxford: Radcliffe Medical Press Ltd, 2002), p. 171. 2 Foley, K. M. The treatment of cancer pain. New England Journal of Medicine 1985, 313:84–95. 3 Sittl, R. Transdermal buprenorphine in cancer pain and palliative care. Palliative Medicine 2006, 20(1):ss. 25–30. 4 Simonet, G. Opioids: from analgesia to anti-hyperalgesia? Pain 2005, 118:8–9. 5 BuTrans product monograph (Napp Pharmaceuticals, December 2009). 6 Likar et al. Long-term management of chronic pain with transdermal buprenorphine: a multicenter, open-label, follow-up study in patients from three short-term clinical trials. Clinical Therapeutics 2006, 28:943–952. 7 Collett, B. J. Chronic opioid therapy for non-cancer pain. British Journal of Anaesthesia 2001, 87:133–143. 8 Pradhan, A. A. A. et al. In VivoDelta Opioid Receptor Internalization Controls Behavioral Effects of Agonists. PLoS ONE 2009, 4(5):e5425 (doi:10.1371/journal.pone.000542). 9 Pergolizzi et al. Opioids and the management of chronic severe pain in the elderly: consensus statement of an international expert panel with focus on the six most often used World Health Organization step III opioids (buprenorphine, fentanyl, hydromorphone, methadone, morphine, oxycodone). Pain Practice 2008, 8(4):287–313. 10 Gallagher et al. Utilization characteristics and treatment persistence in patients prescribed low-dose buprenorphine patches in primary care in the United Kingdom: a retrospective cohort study. Clinical Therapeutics August 2009, 31(8):1707–1715. 11 Vadivelu, N. et al. Management of chronic pain in the elderly: focus on transdermal buprenorphine. Clinical Interventions in Aging 2008, 3(3):421–430. 12 Hand, C. W. et al. Buprenorphine disposition in patients with renal impairment: single and continuous dosing, with special reference to metabolites. British Journal of Anaesthesia 1990, 64:276–282. 13 Lasseter, K. C. et al. Systemic pharmacokinetic (PK) study of buprenorphine (B) in mild to moderate chronic hepatic impairment (CHI). Clinical Pharmacolacology & Therapeutics 2001, 69:P2.

Correspondence Dr Thanan Elalingam, Specialist Registrar in Anaesthetics and Intensive Care, Prince of Wales Hospital, Barker Street, Randwick NSW 2031, Australia E-mail: t_elalingam@yahoo.com Dr Rajib Dutta, Locum Consultant in Pain Medicine and Anaesthetics, West Hertfordshire Hospitals NHS Trust, Vicarage Road, Watford, Herts, WD18 0HB E-mail: drrajibdutta@yahoo.co.uk; tel: +44 (0)7894 219729

Intellectual property & copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2012. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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A case report on the use of SPECT-CT scanning for precise diagnosis and treatment of C1/2 arthropathy after failed cervical disc-replacement surgery Dr Mark Miller MB ChB FRCA FFPMRCA Dr John Pattison MB BS FRCR Dr Stephen Lord MB ChB

Abstract The diagnosis of organic spinal pain is classically made using diagnostic medial branch blocks and discography. Diagnostic medial branch blocks and discography are time consuming and require subjective reporting, and carry risks of infection and false positive results. MRI findings are often of normal or multilevel problems with no specific focus seen. SPECT-CT scanning is a fusion of a bone scan and a low-voltage CT scan showing active degenerative processes. In this report, we discuss whether this highly sensitive but rarely used investigation for musculoskeletal problems may help to provide objective evidence of pain generators and precise targets for injection treatments in mechanical spinal pain. In this case a 46-year-old patient presented with intractable left-sided mechanical cervical pain following failed cervical disc replacement surgery at the C6/7 level. Preand post-operative MRI scans failed to show a precise area of degeneration with widespread cervical changes noted. A SPECT-CT scan of the patientâ&#x20AC;&#x2122;s cervical spine showed an abnormality in the replaced disc but also the C1/2 facet joints, more so on the left. Left C1/2 facet joint steroid injection followed by radiofrequency (RF) denervation at the left C1/2 and C2/3 levels, as well as a left C6 root sheath block with steroid and paracervical trigger point injections resulted in a greatly reduced level of pain. Keywords Mechanical spinal pain, facet joint, disc-replacement surgery, MRI, SPECT-CT, discography, medial branch blocks

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Introduction The diagnosis of organic, mechanical spinal pain is a difficult and time-consuming process, which relies on a combination of techniques, including diagnostic medial branch blocks and discography. These procedures, due to their invasive nature, are not without significant risks, such as infection. They are also prone to false negative and false positive results, which give the appearance of failed therapy, where in actual fact the therapy has been incorrectly targeted. Imaging in this patient group has been mainly confined to magnetic resonance imaging (MRI) and CT scans that shows structural changes, which may or may not correlate to the cause of the symptoms. MRI can show signal changes indicating marrow oedema adjacent to joints to suggest areas of inflammatory arthropathy but is, as yet, not proven to be of value in targeted therapy for mechanical back pain. Bone scanning with single photon emission computed tomography – computed tomography (SPECT-CT) is a hybrid fusion study comprising a standard bone scan using technetium-99m labelled phosphonate with a low-voltage CT scan, which allows highly accurate localization of abnormal areas of uptake compared with planar bone scanning alone.1,2 This enables accurate identification of areas of increased bone turnover, which are often as a result of pathology of the bone; thus showing degenerative changes in affected joints. In this case report, we show a patient who had symptoms, which were not explained on MRI findings, and an unsuccessful surgical intervention. A subsequent review and referral for SPECT-CT bone scan redirected the patient’s further management, leading to a more successful outcome.

Methods A 46-year-old patient started with gradual onset of severe left-sided cervical pain in January 2008. The patient was referred to an orthopaedic spinal surgeon and it was noted that their pain was purely mechanical with no signs of myelopathy. A plain Xray of the cervical spine revealed some loss of disc height at C6/7 with minor osteophytic formation. An MRI scan was performed which showed multilevel disc degeneration from C3 to C7. The multilevel involvement was felt initially to make surgery inappropriate. The patient was therefore referred for physiotherapy. This did not improve matters, so at surgical review a C6/7 disc-replacement procedure was offered. Surgery was undertaken in April 2009. Recovery was without incident but there was no discernible pain relief. A post-operative MRI scan in September 2009 showed no further abnormality. The patient was first seen in the pain clinic in September 2009. The main symptoms were of constant mechanical cervical pain worse with flexion, extension and lateral rotation. The problem was bilateral pain but much worse on the left side. It was particularly painful to palpate the upper cervical paravertebral muscle. A SPECT-CT bone scan was requested because previous imaging had not been helpful. This was also undertaken in September 2009. The radiologist reported the expected uptake of radioactive tracer in relation to the operative site of the C6/7 disc replacement (Figure 1). It was also reported as showing ‘striking increased uptake in relation to the left C1/2 facet joint, in keeping with degeneration’ (Figure 2).

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Figure 1

Figure 2

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Results Bilateral C1/2 facet joint injections with dexamethasone were undertaken in October 2009 (Figure 3 and Figure 4). Image intensification was used. Five days of excellent pain relief were achieved but then, unfortunately, the pain returned to its preinjection level. Figure 3

Figure 4

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At follow-up RF denervation was discussed and agreed with treatment limited to the left side. This was undertaken in November 2009 (Figure 5). Figure 5

      With the risk of local anaesthetic toxicity very high, only 0.3 ml of 0.125% lidocaine was used for anaesthesia to the left C1/2 medial branch after it had been found with a positive 50 Hz stimulus at 0.4 V. 2 Hz stimulus was negative to 1 V. Local anaesthesia of the medial branch was incomplete and the subsequent RF lesioning for one minute at 80° C was painful but tolerated because of prior explanation. Again at follow-up in December 2009 the patient reported a marked improvement in cervical spine movements with impressive bilateral flexion and lateral rotation now possible. Pain was, however, still an issue but further examination revealed tenderness only over the lower left paracervical muscle. After further discussion, a left C6 root block with dexamethasone was undertaken in December 2009 (Figure 6 and Figure 7). Figure 6

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Figure 7

At review in June 2010, seven months after the RF lesioning, there was minimal pain at the level of the left C1/2 facet joint with 90° of left lateral cervical rotation possible. Subjective pain was reported only at the limit of lateral rotation. Unfortunately, the patient complained of persistent left-sided C5 and C6 dermatomal neuropathic pain. This, however, gradually resolved over the ensuing months helped by repeated RF denervation of the left C1/2 medial branch with, in addition, RF denervation of the left C2/3 medial branch, left C5 root block with dexamethasone and left paracervical trigger point injections with Dysport. Orthopaedic and neurosurgical review excluded any left shoulder pathology or ongoing mechanical cervical cause that may be remediable to a further operation. The patient continues with a low level of left-sided mechanical paracervical pain with occasional ‘bad days’ and is having ongoing cognitive behavioural therapy.

Discussion This case raises several interesting discussion points. 1.

The relevance of MRI scanning in the diagnosis of mechanical spinal pain.

2.

The use of SPECT-CT scanning in the diagnosis of mechanical spinal pain.

3.

The use of intra-articular steroid as a diagnostic and therapeutic block in facet joint pain instead of medial branch blocks when SPECT-CT shows positive facet joint degeneration.

4.

The risk of local anaesthetic toxicity in atlanto-axial-occipital procedures.

It is clear that MRI scanning of the spine is of great value where there is neuralgic pain, but is of limited value in the diagnosis of mechanical spinal pathology. Bone marrow oedema may be detected adjacent to joints, but the relevance in relation to pain is not fully established. Three studies3,4,5 have addressed the issue of the sensitivity and specificity of MRI scanning in detecting morphological abnormalities associated with lumbar back pain. These authors looked at intervertebral disc, end plate and vertebral body abnormalities. The overall conclusion is that MRI scanning has a high specificity but low sensitivity for detecting significant vertebral endplate and intervertebral disc structural abnormalities in the presence of low back pain. The technique of provocative discography can be used in the lumbar spine to try to confirm abnormal MRI findings as relevant to a patient’s pain. The shortcomings of 108

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discography are well documented.6 One study7 has evaluated the role of MRI scanning in diagnosing lumbar facet joint arthropathy. Facet joint synovial abnormalities in 31 individuals with low back pain were compared with facet uptake of technetium-99 in a SPECT study of each individual. 93% of those studied showed synovial abnormalities with a positive SPECT study. SPECT bone scanning is not widely used as a predictor of back pain presence. There have, however, been some publications on this8,9,10,11 with one showing significant advantage of including SPECT-CT bone scanning in the diagnostic algorithm, in terms of both clinical outcome and cost to the health economy.12 In this study, the study group who underwent SPECT-CT bone scanning showed a significant improvement in short-term pain relief compared with the control group (p < .004). There has been a further study12 at predicting facet joints likely to benefit from injection in individuals with mechanical low back pain. In this paper, 87% of SPECT positive individuals had a reduction in pain scores at three months whereas only 31% who did not have a SPECT scan had a reduction at this time. The study suffered due to there being a failure to adjust for the placebo effect of investigation and no followup beyond three months. SPECT scanning uses technetium-99m labelled diphosphonate injections. Two to four hours after injection, the material is incorporated into hydroxyapatite crystals present in the matrix of new bone formation.13 Theoretically, by detecting areas of increased bone turnover, areas of insult to bone may be identified and an accurate representation of potential causes of pain can be produced, allowing clinicians to deliver a diagnosis with relative certainty. Actively degenerating joints are not the only areas that will pick up the material, with the differential diagnosis including malignancy, infection, trauma and inborn errors of metabolism; thus, the specificity of diagnosis is limited when using the scan alone for diagnosis.14 A further level of anatomical reference has been introduced into SPECT scanning with superimposition of the nuclear image onto a CT image by hardware fusion. This type of technique has been widely proven to be of value with positron emission tomography (PET)-CT. Hybrid cameras now exist to allow this acquisition of SPECT and CT images to occur simultaneously and the scan produced is known as a SPECTCT scan. The use of this is well established in neuropsychiatry and oncology.15,16 Further studies based on its use in the diagnosis of spinal pain, as outlined above, now appear to support its value in the accurate diagnosis of the underlying causes of the pain. A major advantage of SPECT-CT on SPECT is that SPECT-CT can show intervertebral disc degeneration, adding a further dimension to the diagnosis and understanding of the aetiology of back pain. It is the experience of Dr Mark Miller, one of the authors of this paper, from his own use of SPECT-CT on many patients, that both intervertebral discs and facet joints can show radioactive tracer uptake in mechanical spinal pain. This is an area ripe for future randomised controlled studies. Mechanical cervical spine pain provides a greater diagnostic conundrum than mechanical lumbar pain. Discography is not without significant risks in the cervical spine. The limitations of MRI scanning have already been dealt with. The use of SPECT-CT scanning has great potential and, as shown in this case report, has given an accurate diagnosis in this case and has allowed successful subsequent treatment. The authors would argue that the use of intra-articular steroid as a diagnostic and therapeutic procedure is superior to the use of medial branch blocks as diagnostic procedures. It is felt by the authors that a diagnostic facet joint injection is still required prior to proceeding to medial branch RF denervation in SPECT-CT positive 109

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cases because of the risk of false positive findings. The close proximity of the vertebral artery at the C1/2 level to the facet joint at that level gives a high risk of vascular absorption and subsequent neurotoxicity. Patient counselling and choice is important with such high RF lesions and intravenous sedation with anaesthetic monitoring is preferred.

Summary This case report shows that SPECT-CT scanning in a complex pain presentation with failed spinal surgery syndrome has allowed for a precise diagnosis and treatment without the use of diagnostic medial branch blocks or discography. In this case with disc-replacement surgery having already been undertaken, discography is impossible at the level of previous surgery. With respect to the upper cervical facet joints, local anaesthetic medial branch blocks can be seen as somewhat risky because of the proximity of the vertebral artery. The discussion section of this case report looked at the evidence available for the investigative diagnosis of mechanical spinal pain using MRI, discography and SPECT-CT and concluded that SPECT-CT is a much underused and possibly very valuable tool. Acknowledgements We thank the patient for kindly allowing us to proceed with the medical details required to produce this case report.

Conflict of interest disclosures None.

References Strobel,  K.,  Burger,  C.,  Seifert,  B.,  Husarik,  D.,  Soyka,  J.,  &  Hany,  T.  Characterization  of  focal  bone   lesions  in  the  axial  skeleton:  performance  of  planar  bone  scintigraphy  compared  with  SPECT  and   SPECT  fused  with  CT.  American  Journal  of  Roentgenology  2007,  188(5):W467.   2  Horger,  M.,  Eschmann,  S.,  Pfannenberg,  C.,  Vonthein,  R.,  Besenfelder,  H.,  Claussen,  C.,  &  Bares,  R.   Evaluation  of  combined  transmission  and  emission  tomography  for  classification  of  skeletal   lesions.  American  Journal  of  Roentgenology  2004,  183(3):655–661.   3  O’Neill,  C.,  Kurgansky,  M.,  Kaiser,  J.,  &  Lau,  W.  Accuracy  of  MRI  for  diagnosis  of  discogenic  pain.   Pain  Physician  May–June  2008,  11(3):311–326.   4  Weishaupt,  D.,  Zanetti,  M.,  Hodler,  J.,  Min,  K.,  Fuchs,  B.,  Pfirrman,  C.,  &  Boos,  N.  Painful  Lumbar   Disk  Derangement:  Relevance  of  endplate  abnormalities  at  MR  imaging  1.  RSNA  2001,  420–427.   5  Lei,  D.,  Rege,  A.,  Koti,  M.,  Smith,  F.,  &  Wardlaw,  D.  Painful  Disc  Lesions:  Can  Modern  Biplanar   Magnetic  Resonance  Imaging  Replace  Discography?  Journal  of  Spine  Disorders  &  Techniques  2008,   21(6):430.   6  McDonald,  M.,  Cooper,  R.,  &  Wang,  M.  Use  of  computed  tomography  –  single  photon  emission   computed  tomography  fusion  for  diagnosing  painful  facet  arthropathy.  Neurosurgical  Focus,   2007,  22(1):1–4.   7  Kim,  K.  &  Wang,  M.  MRI-­‐based  morphological  predictors  of  SPECT  positive  facet  arthropathy  in   patients  with  axial  back  pain.  Neurosurgery  2006,  58:147–156.   8  McDonald,  M.,  Cooper,  R.,  &  Wang,  M.  Y.  Use  of  computed  tomography-­‐single-­‐photon  emission   computed  tomography  fusion  for  diagnosing  painful  facet  arthropathy.  Technical  note.  Neurosurg   Focus  15  January  2007,  22(1):E2.   1

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9 Kanmaz,  B.,  Collier,  B.  D.,  Liu,  Y.,  Uzum,  F.,  Uygur,  G.,  Akansel,  G.,  Gunes,  I.,  Krasnow,  

A. Z.,  Hellman,  R.  S.,  Isitman,  A.  T.,  &  Carrera,  G.  SPET  and  three-­‐phase  planar  bone  scintigraphy  in   adult  patients  with  chronic  low  back  pain.  Nucl  Med  Commun  January  1998,  19(1):13–21.   10  Ryan,  R.  J.,  Gibson,  T.,  &  Fogelman,  I.  The  identification  of  spinal  pathology  in  chronic  low  back   pain  using  single  photon  emission  computed  tomography.  Nucl  Med  Commun  July  1992,   13(7):497–502.   11  Dolan,  A.  L.,  Ryan,  P.  J.,  Arden,  N.  K.,  Stratton,  R.,  Wedley,  J.  R.,  Hamann,  W.,  Fogelman,  I.,  &   Gibson,  T.  The  value  of  SPECT  scans  in  identifying  back  pain  likely  to  benefit  from  facet  joint   injection.  Br  J  Rheumatol  December  1996,  35(12):1269–1273.   12  Pneumaticos,  S.,  Chatziioannou,  S.,  Hipp,  J.,  Moore,  W.,  &  Esses,  S.  Low  Back  Pain:  Prediction  of   Short-­‐Term  Outcome  of  Facet  Joint  injection  with  Bone  Scintigraphy  1.  RSNA  2006,  693–698.   13  Jarvik,  J.  &  Deyo,  R.  Diagnostic  evaluation  of  low  back  pain  with  emphasis  on  imaging.  Am  Coll   Physicians  2002,  586–597.   14  Love,  C.,  Din,  A.,  Tomas,  M.,  Kalapparambath,  T.,  &  Palestro,  C.  Radionuclide  Bone  Imaging:  an   illustrative  review  1.  RSNA  2003,  341–358.   15  Johnston,  K.,  Ptito,  A.,  Chankowsky,  J.,  &  Chen,  J.  New  frontiers  in  diagnostic  imaging  in   concussive  head  injury.  Clinical  Journal  of  Sports  Medicine  2001,  11(3):166.   16  Scillaci,  O.  Hybrid  SPECT  CT:  a  new  era  for  SPECT  imaging?  European  Journal  of  Nuclear   Medicine  and  Molecular  Imaging  2005,  32(5):521–524.     Contacts/correspondence Dr Mark Miller, Anaesthetic Department, Royal Shrewsbury Hospital, Shrewsbury SY3 8XQ E-mail: markmllr02@googlemail.com

Intellectual property & copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2011. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Scalp dysaesthesia Dr Sangeeta Das MBBS DA FRCA (Anaesthetic Registrar, Bradford Teaching Hospitals NHS Trust) Dr Neil Collighan FRCA FFPMRCA (Consultant in Anaesthesia and Pain management, East Kent Hospitals)

Abstract Painful scalp conditions or scalp dysaesthesias seem to occur more commonly in females. This is the case of a young lady who has been suffering from a burning, stinging scalp sensation for the last six years. She was initially successfully managed with low-dose antidepressants, the mainstay for this kind of condition; but they had ceased to work. A number of therapeutic options were suggested, ranging from simple physical measures to invasive interventional techniques. Topical neuropathic agents such as gabapentin cream, lignocaine patches, dothiepin cream and ketamine were suggested. Though there is level-3 evidence for the use of gabapentin cream in cutaneous neuropathic pain,1 it is not readily available in the UK. Failing medical therapy, occipital nerve blocks followed by pulsed radiofrequency was a suggestion. Keywords Chronic, neuropathic, alopecia, psychiatric, topical creams, occipital blocks

Introduction Painful scalp conditions are also known as scalp dysaesthesias. They occur more commonly in females. The symptoms may range from pain only, to pain and pruritus, to pruritus only. They may also be associated with alopecia. It is common to find an overlay of psychiatric disorders and it often bears an association with stress.2 With all chronic, severe, complicated pain a biopsychosocial multidisciplinary approach is recommended. If yellow flags feature it is recommended that cognitive behavioural therapy is considered, usually alongside other therapies aimed at alleviating pain per se, reducing burdensome polypharmacy and improving physical functioning.

Problem This is the case of a young lady who has been suffering from a burning, stinging scalp sensation over the whole of the vertex of the scalp for the last six years. She links it to a home perm she had prior to the onset of symptoms. There was associated partial alopecia with some scarring over few areas. She avoids hats or any headgear because she finds it unbearable. There were no special aggravating or relieving factors. There was no evident psychosocial history. She had been seen by several dermatologists, who were left clueless. She had been treated with low-dose amitriptyline (25 mg), which she found useful in the beginning but not any more. She used a topical corticosteroid cream that helped give a cooling effect although temporarily.

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There was some speculation whether this could be referred pain or a post-herpetictype pain.

Recommended investigations Underlying medical conditions such as temporal arteritis and tension headaches must be ruled out. An Erythrocyte sedimentation rate would be useful in doing so.2 Psychiatric evaluation is useful to decipher an underlying psychiatric disorder if present.

Recommended treatments This was considered as a localised cutaneous neuropathic type of pain. A number of therapeutic options were suggested, ranging from simple physical measures to invasive interventional techniques.

Physical therapy Cool caps that are used in the chemotherapy unit could be tried if the patient can tolerate their head being covered.

Pharmacotherapy The stress was mainly on topical applications. Gabapentin cream was anticipated to be most effective and debated upon quite extensively in the forum. In a retrospective study on patients with vulvodynia in Alaska, gabapentin cream was found to give 80% patients 50% pain relief.1 Although gabapentin cream is not available in the UK, there were suggestions for it to be prepared in the local pharmacy as is sometimes done in the US. In the study, gabapentin cream was made by dissolving gabapentin powder in ethoxy diglycol, then levigating the mixture into PCCA Lipoderm base (PCCA, Houston, TX), an enhanced base which facilitates tissue penetration, and placing the final product in plastic tubes for dispensation. Creams were dispensed as 2%, 4% or 6%. A great advantage of topical therapy would be avoiding adverse effects for at least two reasons. First, the amount of active drug in topical preparations is significantly less than that administered orally, and second, there is reduced systemic absorption of the medication. For instance, transdermal 6% gabapentin (60 mg/ml) applied thrice a day, will result in a total daily exposure of approximately 100 mg of active drug, which is well below the therapeutic range.1 Some other topical applications suggested were lignocaine patches (Versatis) either alone or in combination with gabapentin cream to alternate between day and night. Dothiepin 5% cream (known as Xepin) was also suggested. It is available in the UK and can be found in the British National Formulary However, therapeutic efficacy is uncertain and side effects of tricyclic antidepressant medication still occur. The use of topical ketamine was explored because it was recently reported to be successful in treating neuropathic pain in a randomised controlled trial. A mixture of topical ketamine and gabapentin has been used by a clinician in Canada. Whether such formulations can be made by local pharmacies in the UK is still a thought.

Interventional therapy A diagnostic occipital nerve block could be considered and, if successful, and followed by occipital nerve radiofrequency lesioning, this could give long-term pain relief.

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If there is allodynia on the scalp then there could be a possibility of responding to stellate ganglion block.

Referring-consultant feedback Oral gabapentin would be tried in the first instance starting at a low dose with slow titration upwards to avoid side effects, failing which the option of topical gabapentin would be investigated. If there is no response to the above, greater occipital nerve block would be tried, followed by radiofrequency lesioning of the same in case of a positive diagnosis.

References 1.

Boardman, L. A. et al. Topical Gabapentin in the Treatment of Localized and Generalized Vulvodynia. Obstetrics & Gynaecology 2008, 112:579–585.

2.

Hoss, D. & Segal, S. Scalp Dysesthesia. Arch Dermatol March 1998, 134:327– 330.

Contact Dr Sangeeta Das, email: sangeeta_76@hotmail.com

Intellectual property & copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2011. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Chronic pelvic pain syndrome 1

Dr Sophie M. Shotter MB ChB BSc 2 Dr Neil Collighan FRCA FFPMRCA

Abstract This is a case of chronic post-operative pelvic pain, which proved very difficult to manage. Several possible treatment routes were proposed following a biopsychosocial approach. Radiofrequency lesioning, facet joint blocks, sympathetic block and ganglion impar block have all been proposed. More simple interventions and physiotherapy are also suggested. Keywords Chronic, pelvic, neuropathic, pain, TURP, radiofrequency, pudendal, ganglion impar, sympathetic, facet joint, sacral ligaments

Introduction With all chronic, severe, complicated pain a biopsychosocial multidisciplinary approach is recommended. If yellow flags feature it is recommended that cognitive behavioural therapy is considered, usually alongside other therapies aimed at alleviating pain per se, reducing burdensome polypharmacy and improving physical functioning.

Problem A fit and well 72-year-old retired car mechanic initially presented to A&E with acute urinary retention. He was treated with transurethral resection of the prostrate (TURP) by the urologists. In the initial post-operative period he complained of moderate burning pain in the perineum, which was absent on waking but present as soon as the patient mobilised. The patient denied penile pain. The patient also complained of a feeling of needing to empty his rectum immediately after eating. Examination revealed a diffusely tender perineum, with pain that could be provoked by deep pressure immediately in front of the anus. The patient described exacerbating factors of heat and defaecation, and relieving factors of cold and direct digital pressure on the anus. Two further bladder neck incisions and a trans-abdominal prostatectomy did not relieve his symptoms. No specific diagnosis was made.

Recommended investigations Initially, a thorough examination of the lower back, sacro-iliac joints and pelvic floor muscles is recommended to identify any pelvic girdle pathology that may explain the symptoms. An examination of the abdomen may also help to identify further trigger

1 2

CT2 Anaesthesia, East Kent Hospitals. Consultant in Anaesthesia and Pain Management, East Kent Hospitals.

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points. The first line of further investigation should be an MRI and/or CT Pelvis to ensure there is no pathology that has been missed on clinical examination. Use of a radiofrequency (RF) machine to identify the pudendal nerve is also suggested. The aim of this is to determine whether this stimulation reproduces the patientâ&#x20AC;&#x2122;s symptoms, providing a focus for further treatment.

Recommended treatments Simple manoeuvres Use of a coccygeal or doughnut cushion may help to relieve discomfort.

Pharmacotherapy Pharmacological treatment should follow the neuropathic pain analgesic ladder, although there is some suggestion it is best to avoid amitryptiline due to the risk of urinary retention. The use of opioids for neuropathic pain also appears to be beneficial in intermediateterm studies.1

Physical therapy If pelvic girdle pathology has been identified, then physiotherapy may also be useful.

Therapeutic interventions Many various interventions may provide potential benefit. Bilateral medial branch facet joint blocks from L3 to L5 was attempted in this patient as well as a hypogastric block and deep perineal injection with bupivacaine. Although these provided no relief in the above patient, these therapies may be beneficial in other similar patients. A ganglion impar block with 8 ml bupivacaine was attempted with no response in this patient. A further suggestion of combining a caudal epidural with a ganglion impar block was made, using 40 mg depomedrone with 6 ml 0.25% bupivacaine for the caudal and 40 mg depomedrone with 2 ml 0.25% bupivacaine for the ganglion impar block. Careful positioning of the patient post-procedure is recommended, with bent legs for ten minutes. Injection of the origins and insertions of the sacral ligaments may provide some benefit if the pain is due to ligamentous injury at the time of surgery. Targeting the pudendal nerve is proposed as a possible treatment. Pudendal nerve block using a posterior approach was suggested, as well as pudendal nerve pulsed RF lesioning (PRL). If the nerve blocks prove to be unhelpful then it is possible other branches have been damaged. In this situation one possibility would be to titrate a lignocaine infusion to mild side effects (such as tinnitus). If the pain disappears during the perfusion, the probability of nerve damage may be very high (suggested by some to be above 98%). Pulsed RF of S2, 3 and 4 was also recommended, although varying programmes were suggested. Either two cycles of 42° C for two minutes, or a duration of ten minutes were both proposed. 116

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If the pain is stronger on one side then dorsal column stimulation with a single electrode introduced retrogradely from the mid-lumbar region may suffice. Otherwise, one electrode per side will be needed. Pelvic and lumbar sympathetic block were also advised as being of potential benefit. Among all of the above treatments, it is important to remember the role of psychological support. Providing reassurance, literature about persistent postsurgical pain and counselling may make the patient’s condition easier for them to cope with.

Referring-consultant feedback The ganglion impar block was attempted with a larger volume of bupivacaine (6– 8 ml of 0.5%). The pudendal nerve blocks both reproduced the pain as well as eliminated it for some eight hours, but the patient became incontinent (urinary) for the duration. Pulsed RF ten minutes 45–50 v, 2 Hz, 20 ms, 42° C had no effect whatsoever. The patient did not return, lived more than 1,000 km away and did not think there was any more to offer. Neither the patient nor the consultant was prepared to risk a thermal RF of the pudendal nerves.

References 1.

Cochrane Collaboration.

Contact Dr Sophie Shotter, email: smshotter@doctors.org.uk

Intellectual property & copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2012. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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An unusual presentation of back pain Dr Daniel Sellers MBBS1 Dr Neil Collighan FRCA FFPMRCA2

Abstract This is a case illustrating the unusual symptomology that can occur in chronic back pain, and an approach to diagnosis and management of those with unusual presentations. Keywords back pain, nocturnal pain, nucleoplasty, provocation discography

Introduction Chronic low back pain is a form of pain with many different aspects, from the strictly anatomical to the psychosocial, and can present in a multitude of different ways. The balance between the search for serious underlying pathology, and the harm caused by over-investigation can be hard to strike. This is particularly true when the pain presents with unusually specific or abnormal features. This case describes one such case and discusses the interventions that may be performed for diagnostic or therapeutic benefit. With all chronic, severe, complicated pain a biopsychosocial multidisciplinary approach is recommended. If yellow flags feature it is recommended that cognitive behavioural therapy be considered, usually alongside other therapies aimed at alleviating pain per se, reducing burdensome polypharmacy and improving physical functioning.

Problem A 50-year-old man presented to the chronic pain clinic with back pain of unusually specific timing. He was asymptomatic throughout the day, physically active and independent, but was awoken from sleep with severe low back pain every night at 3.00 a.m. After pacing the bedroom for 10 minutes, the pain disappeared as suddenly as it began.

Differential diagnosis Discogenic low back pain was initially considered as a primary diagnosis; however, the timing was considered atypical. If associated with paravertebral tenderness, and better on movement, facet joint pain or dorsal ramus syndrome may be the cause.

1

Senior House Officer, East Kent Hospitals NHS Foundation Trust.

2

Consultant in Anaesthesia and Pain Management, East Kent Hospitals NHS Foundation Trust. Journal of Observational Pain Medicine â&#x20AC;&#x201C; Volume 1, Number 1 (2012) ISSN 2047-0800


Other rarer causes, for instance osteoid osteosarcoma, which causes pain predominantly at night, were also considered. However, the recent normal MRI scan and the transient nature of the pain were felt to exclude this diagnosis. A renal source for the pain, for example nephrolithiasis, is also possible – in particular as the normal ultrasound scan of the renal tract cannot exclude the passing of stones during the night.

Investigations Clinical examination revealed no abnormalities of the back, and no objective neurological deficits were found. Routine blood investigations, plain film X-rays, MRI of the lumbar spine, and ultrasound scan of the abdomen and renal tract were all normal. Provocation discography, in search of a transiently opening of a tear in the annulus fibrosis, was considered. This is a technique where a contrast medium is injected directly into the nucleus pulposus, and an attempt to demonstrate leakage through the annulus by radiographic screening is made. However, this technique is associated with significant false positive rate in undifferentiated chronic pain conditions (6% in low back pain, but up to 50% in those with somatisation disorder),1 and was thought not to be warranted in this case.

Interventions Simple analgesics, non-steroidal anti-inflammatories and weak opioids were all tried. Amitriptyline was similarly unhelpful. The next question was whether to offer an invasive intervention without a precise diagnosis:

Lumbar epidural: if the cause of the pain is nerve root stenosis, which was not immediately apparent on the MRI scan, this may be associated with temporary symptom relief. However, epidural steroids injections are not without risk (postdural puncture headache in 1%, and epidural haematoma in 0.02%),2 and it was felt inappropriate to offer this as a purely diagnostic or temporising treatment.

Facet joint injection with local anaesthetic was performed in this case as a diagnostic technique, as it was felt that the improvement on movement might point to joint pathology.

Diagnostic medial branch blocks (MBB) were performed bilaterally at the L3/4, L4/5 and L5/S1 spaces, but no significant pain relief was apparent.

Nucleoplasty would be a good treatment option in proven discogenic pain, but not without demonstrable herniation in this patient.

Intradiscal electrothermal annuloplasty may be worthwhile on a purely empirical basis. However, we were reluctant to offer this ablative form of therapy in this patient without greater certainty over the diagnosis.

In spite of the negative diagnostic MBB procedure, a decision was made to proceed with RF ablation of the medial branch, on the basis that the absence of response may be due to the short duration of the local anaesthetic not covering the night time rather than diagnostic error. The patient had an immediate resolution of his symptoms, which was still evident six weeks later on routine follow-up.

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Summary This case illustrates some of the difficulties encountered in treating intractable back pain. The breadth of potential spinal and extra-spinal pathologies present potential for missed diagnosis, but repeated investigations of increasing complexity are probably not warranted. This is particularly the case for interventional diagnostic procedures. The treatment options for low back pain of unknown cause are limited to biopsychosocial interventions, non-specific analgesics (including opioid and neuropathic), which are often of limited help, and invasive procedures aimed at sealing a tear in the annulus fibrosis and ablating the nerves that supply it. This case illustrates the diagnostic difficulty in selecting the correct ablative procedure, and the unreliability of diagnostic blockade in patients with fluctuating symptoms.

References

1

Lee et al. Systematic Review of Lumbar Provocation Discography in Asymptomatic Subjects with a Meta-analysis of False-positive Rate. Pain Physician 2008, 11:513â&#x20AC;&#x201C;538. 2

Collighan, N. & Gupta, S. Epidural Steroids. Continuing Education in Anaesthesia, Critical Care and Pain 2010, 10:1â&#x20AC;&#x201C;5.

Contacts/correspondence Dr Daniel Sellers, Margate Hospital, Margate, Kent UK E-mail: daniel.sellers@doctors.org.uk

Intellectual property & copyright statement We as the authors of this article retain intellectual property right on the content of this paper. We as the authors of this paper assert and retain legal responsibility for this paper. We fully absolve the Editors and Company of JoOPM of any legal responsibility from the publication of our paper on their website. Copyright 2012. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Joopm Vol1 Ed 1 (2012)  

This Journal has been created in recognition of the fact that not all information or advances in pain medicine can be presented in a randomi...

Joopm Vol1 Ed 1 (2012)  

This Journal has been created in recognition of the fact that not all information or advances in pain medicine can be presented in a randomi...