The Blurred Lines of Palliative Care: End-of-Life Care in the Absence of Legislative Clarity

THE BLURRED LINES OF PALLIATIVE CARE: END-OF-LIFE CARE IN THE ABSENCE OF LEGISLATIVE CLARITY

Ciara Coughlan

Assisted dying1 has become a topic of discussion once again in Ireland, following the unsuccessful Assisted Dying bill,2 and the recent legalisation of assisted suicide in Spain3 and New Zealand.4 The debate on whether a similar law should be enacted in Ireland has stirred up emotion, and has attracted strong arguments on both sides. However, in the absence of legislation from the Oireachtas, legal principles established in controversial cases continue to apply to patients and their families facing end of life decision making. This article seeks to add to the discussion by analysing the scope of this case law and assessing the implications for end-of-life care in the continued absence of legislative clarity.

The right to life is protected by Article 40.3° of the Constitution and is considered to be one of the fundamental rights guaranteed by the State.5 This right was afforded a supplementary degree of protection by the European Convention on Human Rights, which has been incorporated into Irish law since the promulgation of the European Convention on Human Rights Act 2003.6 Euthanasia and assisted suicide are criminalised under section 2(2) of the Criminal Law (Suicide) Act 1993.7 There has been much debate over the years as to whether this blanket ban represents the State’s commitment to their duty to protect the life of the individual or is rather an encroachment on the personal life of the individual who wishes to pass away.8 When faced with these issues, the Court is tasked with regulating complex medical,

1 Assisted suicide is defined as ‘the act of intentionally providing another person with the knowledge or means to end his or her life, at his or her request’ for the purpose of this article. 2 Dying with Dignity Dáil Bill 2020. 3 Bill No. 46-7 on the Organic Law to Regulate Euthanasia (Spain). 4 End of Life Choice Act 2019, s2 (New Zealand). 5 Re Ward of Court (withholding medical treatment) (No. 2) [1996] 2 IR 79. 6 European Convention on Human Rights Act 2003 s1(2). 7 Criminal Law (Suicide) Act 1993, s2. 8 Rachel Gaffney, ‘Regulating Life, Death and Choice’ (2021) 10 Kings Inn Law Review 20. 52

constitutional, and ethical decisions that present profound moral and philosophical issues.9

The Irish Courts first broached the topic in Re Ward of Court10 where the courts firmly denied the existence of a right to die as an implicit element of the right to life under article 40.3° . 11 The case concerned a ward of court who had been living in a near persistent vegetative state (PVS) for 23 years, who wished to withdraw treatment. In his judgment, Hamilton CJ stated that the right to life implies the right to have nature take its course and to die a natural death, and not to have life artificially maintained unless the individual so wishes. Upholding the High Court decision, the Supreme Court held that the withdrawal of hydration and nutrition would not amount to unlawful killing, as it would not constitute a positive act but rather amounted to an omission to struggle12 .

The decision was based on a test that assessed the best interest of the ward, whilst staying within the parameters of the constitution.13 The court firmly stated that this case was not about euthanasia, which remains unlawful, and was confined only to the natural process of dying.14 The decision established that a competent patient does not have a right to die, but in appropriate circumstances the courts may authorise a course of action short of active euthanasia intended to bring about the death of a ward of court.15 However, in the wake of the decision, questions were raised as to the difference between the legal and medical definition of euthanasia. Was euthanasia to be understood only as an action which leads to the death of another or can an omission also constitute euthanasia?16 There was also a call for the legislature to provide clarification on the distinction between medical treatment, the withdrawal of nutrition and the palliative administration of drugs which may result in death.17

9 Re Ward of Court (n 5). 10 ibid. 11Art 40.3.2°. 12 Finn Keyes ‘Children’s Rights and End of Life Decision-making: In the Matter of JJ’ (2021) 5(1) Irish judicial Studies Journal 58. 13 Claire Tunissen, ‘Re A Ward of Court’ (1995) Medico-Legal Journal of Ireland 1(2) 61. 5 14 Denis Cusack, ‘Re A Ward of Court: Medical Law and Medical Ethics Diverge, a MedicoLegal Analysis’ (1995) 1(2) Medico-Legal Journal of Ireland 43. 15 Gerard Hogan and Gerry Whyte, Kelly: The Irish Constitution (5th edn, Bloomsbury Professional 2018). 16 Gaffney (n 8) 20. 17 Adam McAuley and David Tomkin, ‘Re A Ward of Court: Legal Analysis’ (1995) 1(2) MedicoLegal Journal of Ireland 45.

The existence of a right to die as a corollary of the right to life was raised again in Fleming v Ireland. 18 Marie Fleming, a mentally competent woman in the final stages of multiple sclerosis, challenged the constitutionality of the blanket prohibition on assisted suicide and sought a declaration that section 2(2) of the 1993 Act was incompatible with the European Convention on Human Rights (ECHR). The Supreme Court dismissed these claims on appeal, citing Hamilton CJ in stating that no person has the right to terminate, or have terminated, his or her life.19 The distinction drawn here between palliative care and assisted suicide was based on intention; the purpose of administering palliative care is to alleviate pain, which can accelerate death, while in the case of assisted suicide, the intention is to cause death.20 This is often described as the doctrine of double effect, which ’distinguishes between the consequences a person intends and those that are unintended but foreseen. ’21 In the context of end of life care, the doctrine of double effect can justify the administering of palliative care that hastens death, if the purpose of that treatment is to alleviate pain and not to cause the death of the patient.22

The shortcomings of the doctrine of double effect were flagged in the recent case of In the Matter of JJ. 23 Here, the Supreme Court dismissed the appeal, and allowed a hospital to withhold lifesaving interventions in certain circumstances The case involved a young boy with permanent devastating brain injuries who was experiencing dystonia, which caused prolonged and painful involuntary contractions of the muscles.24 The dystonic episodes were treated with pain relief administered by an injection. However, this drug repressed his respiratory function, and physical intervention was often required to save his life. Having witnessed this vicious cycle for over a month, the medical team made an application to the High Court to allow them to treat John in the manner that they believed was in John’s best interest. The hospital’s care plan consisted of a combination of acts and omissions that combined would likely result in death; the hospital would

18 [2013] IESC 19, [2013] 2 IR 417. 19 Re Ward of Court (withholding medical treatment) (No. 2) [1996] 2 IR 79. 20 Fleming v Ireland (n 18) [52]. The Court relied on a decision of the Canadian Supreme Court in support of this distinction: Rodriguez v. British Columbia AG [1993] 3 S.C.R. 519. 21 Glenys Williams, “The Principle of Double Effect and Terminal Sedation” (2001) 9 Medical Law Review 41. 22 Keyes (n 12) 58. 23 In the Matter of JJ [2021] IESC 1. 24 Mayo Clinic ‘Dystonia’ <https://www.mayoclinic.org/diseasesconditions/dystonia/symptoms-causes/syc20350480#:~:text=Dystonia%20is%20a%20movement%20disorder,your%20body%20(general %20dystonia)/> accessed on 02/03/2022.

administer pain relief to ease the dystonic pain experienced (a positive act), with the knowledge that respiratory distress would ensue as a result of the pain relief. The medical team wished to then withhold mechanical ventilation (an omission), resulting in death.25 The courts quickly dismissed the argument by counsel for the boy’s parents that the course of action sought by the medical team amounted to an impermissible acceleration of death and, thus, euthanasia.

Keyes, in analysing the decision, criticised the fact that the two components of the treatment were addressed in isolation and in a reversed order, dealing with the omission first before looking at the positive act. In this way, he argued, the causal link was broken, and the reality that the omission was facilitated by the positive act was ignored. The court justified the act of administering pain relief with the knowledge that it would result in respiratory distress by reference to the doctrine of double effect. However, the court itself appeared to implicitly accept that the doctrine of double effect is an unsatisfactory basis for dividing the boundary between lawful and unlawful killing.26 It was very much aware of the weakness in the philosophy that underlined its decision, but perhaps saw it as a necessary fiction in order to achieve a decision that focussed on the patient's best interest.

We have seen how the courts have stretched themselves, and the philosophical reasoning that underpins its decisions, in order to ensure that patients’ best interests are prioritised. In Re Ward of Court the courts stated that it is only resolved to passive practices which allow nature to take its course. However, over 25 years later in Re JJ, it permitted a course of treatment that clearly contained a positive action which would ultimately lead to the patient’s death by dealing with the issue in a roundabout way. The courts have also been prepared to construe the concept of an omission broadly, which has been tolerated in a manner similar to the doctrine of double effect.27 None of the judgments discuss what, if any intervention, should accompany the withdrawal of hydration and nutrition. The decisions also failed to outline how far it is legal for a doctor to administer non-therapeutic, palliative substances in end of life care.28 It is, however, clear that the court is prepared to twist itself in knots, and pronounce these

25 Keyes (n 12). 26 ibid. 27 Ibid. 28 Cusack (n 14) 43.

legal fictions, in order to accommodate humane end-of-life practices as long as the prohibition on euthanasia remains a legal reality.29

End of life decision making raises issues of patient consent, autonomy, dignity, and quality of life. There remains huge unanswered legal, medical, and ethical questions that the courts did not avert, and it is only a matter of time before medical professionals and/or family members of patients appear before the courts with further queries.30 Over two decades have passed since Re Ward of Court came before the Supreme Court, and the call for clarity from the Oireachtas remains largely unmet.31 While we might not yet be ready to enact an assisted dying bill in Ireland, there is an obvious need for legislation to clarify the current state of the law. A holistic discussion, engaging all key stakeholders, is required when drafting this legislation to ensure that the standard of end of life patient care is not eroded. The law should provide clear guidance on decision making for palliative care, and clarity to families during what is already a deeply upsetting time.

29 Keyes (n 12). 30 Cusack (n 14). 31 Gaffney (n 8).