N U R S I N G
T H E
H E A R T
P A T I E N T
C A R E
Palliative Care Palliative care is about more than cancer care Interview with Sheila Payne
Palliative care for older people
The last and final awakening
by: Katherine Froggatt and Katharina Heimerl
by: Jo Hockley
EDITORIAL Editor-in-Chief: Clair Watts
Negotiating transitions by Philip Larkin
Jim Boumelha Editorial Assistants: Catherine Miller, Rudi Briké
Message from the Board An experience of a lifetime
Jason Harris EONS Secretariat: Avenue Mounier 83, 1200 Brussels, Belgium Phone: +32 (0)2 779 99 23
Fax: +32 (0)2 779 99 37 e-mail: firstname.lastname@example.org
Patients know best: Deciding on end-of-life critical care Developing leadership and advocacy skills: The US experience Palliative care is about more than cancer care
FEATURES EONS acknowledges AMGEN (Europe) GmbH, AstraZeneca, Merck KGaA, GSK, Novartis, Nycomed, Pfizer, Hoffmann-La Roche, Sanofi-Aventis Groupe
Dignity in end-of-life care
Networking in palliative care: The experience of Palliatieve Hulpverlening Antwerpen
Monitoring patients’ status in advanced cancer: Why use a measure and how to choose one?
Building up competencies in palliative care: A Swiss national strategy
Managing breakthrough cancer pain in palliative care
The last and final awakening
Palliative care for older people
Unbearable suffering: Defining a concept with undefined parameters
and SpePharm SAS France for their continued support of the Society as sustaining members. Print run: 2000 copies Electronic version accessible to 22000 EONS members Design and production: © 2010 HarrisDPI. www.harrisdpi.co.uk Cover illustration: Eva Vazquez/Folioart.co.uk Disclaimer The views expressed herein are those of the authors and do not necessarily reflect the views of the European Oncology Nursing Society. The agency/company represented in advertisements is solely responsible for the accuracy of information presented in that advertisement. The European Oncology Nursing Society (EONS) does not accept responsibility for the accuracy of any translated materials contained within this edition of the EONS Newsletter. © 2010 European Oncology Nursing Society
The aim of the EONS Newsletter is to provide a written resource for European nurses working in cancer settings as well as inform other healthcare professionals, patients and their families. The content of the articles is intended to contribute to the growing body of knowledge concerning cancer care. All correspondence should be addressed to the Editor-in-Chief at: email@example.com
Negotiating Transitions arlier this year, I was asked to deliver a lecture on the 21st anniversary of cancer nurse education at University College Dublin, entitled ‘From tiny acorns, mighty oak trees grow’. Palliative care and oncology are inextricably linked. Certainly in the UK and Ireland, the first palliative care practitioners arose from an oncology background and, of course, the vision of the founder of the modern hospice movement, Dame Cicely Saunders, had always focused on the need to address the depth of pain – physical, psychosocial and spiritual – experienced by the cancer patients in her care. Our joint heritage in terms of the care and services we offer is something that we should not lose sight of in 21st century healthcare. Yet, palliative care is clearly in transition. The refocus of the 2002 World Health Organization definition of palliative care from ‘speciality’ to ‘an approach to care’, has placed the care of the world’s dying people, particularly from the poorest countries, centre stage. It has, however, left some gaps in interpretation, which palliative care practitioners wrestle with. There has been an explosion of language to define what palliative care is and to whom it is aimed. Chronic, lifelimiting, palliative care, supportive care, end-of-life care are all contemporaneous terms that seem to hold subtle definitions in terms of expectations of the palliative care interface with other specialist care providers. The broadening focus of possible care scenarios means that today we need to be particularly clear where we stand in relation to dying. It also demands that palliative care
practitioners are able to clearly describe who they are and what they do. Inappropriately-made links to the euthanasia debate is one challenge for which palliative care needs to find its global voice. The relationship between oncology and palliative care has not gone unscathed. In some circumstances, integrated links to active oncology have led to accusations by palliative care practitioners of overt and unnecessary ‘reversibility’ interventions at a time when the focus should be on care and comfort – palliative care as ‘oncology-lite’. Conversely, across Europe, cancer patients still constitute the majority of patients in receipt of palliative care and there are concerns that in our attempts to provide palliative care for all, we forget the needs of cancer patients. It is important to foster these debates so that palliative care does not lose sight of its original goals of providing an holistic framework in which dying well is enhanced and managed. Palliative care is rapidly becoming a mighty oak tree, but its roots in oncology are to be valued and lauded. In this edition of the EONS newsletter, my colleague, Ulrika Östlund, and I offer a range of topics that palliative care addresses in the clinical setting: unbearable suffering, dignity, clinical innovation and the needs of service users, such as the elderly. We are also delighted to have interviews with Professor Sheila Payne who, in 2011, will become the first nurse to be President of the European Association for Palliative Care, and Professor Jane Seymour on Advanced Directives. Hope you enjoy it!
Professor Philip Larkin is Joint Chair, Professor of Clinical Nursing (Palliative Care) at University College Dublin and Our Lady’s Hospice and Care Services, Harold’s Cross, Dublin, Ireland.
Message from the Board The August meeting endorsed the result of the EONS major research grant and congratulated Vicki Cleary of the Catherine McAuley School of Nursing and Midwifery, University College Cork, Ireland for her successful application. Her study will address educational needs on sexuality in women with gynaecological cancer.
The EONS Mentoring Research Grant was not made this year as no applications were received. The Research Working Group will now discuss how this award can be made more attractive for members and welcomes suggestions. If you want to contribute ideas, please send them to the EONS office. The Board congratulated Danny Kelly for his appointment as a Professor of Palliative Care at Middlesex University. As part of EONS work to update benefits for members, a President’s Working Group was established to examine the various options on offer. The Group agreed a
proposal whose details were outlined to Advisory Council members at their November meeting. Details will now be circulated to members for further comment. Finally, the next ESO-EONS Masterclass will run from 2-7 April 2011 at Ermatingen (Lake Constance), Switzerland. It will contain an advanced ‘’hands on’’ oncology nursing program running in parallel with the medical sessions. Registration is open until 7 January 2011. Keep your eyes open for further updates about this event. Ulrika Östlund EONS Board Secretary
When Opportunity Knocks: EONS Clinical Travel Grant Research nurse Alessandra Milani (Italy) was the recipient of the 2009 EONS Clinical Travel Grant. She used the opportunity to visit another cancer centre to gain experience and share knowledge with colleagues. The grant allowed her to spend a month on a visit to Trento’s teaching hospital in Milan where she learned how to cope with an arduous schedule, visiting oncology wards as well as attending university. (See her story on the opposite page.) EONS grants pay for costs incurred (clinical site fee, travel, accommodation and expenses) during the clinical site visit which should not be less than one week in duration. In the case of Alessandra, it not only benefited her but also the department she works in and ultimately the patients they care for. Since coming home, she
continued to write the diary she started during the visit and feels that the experience is helping her carry out her new role as head of professional development of nursing and education. She is now implementing an educational programme for nurses in clinical trials similar to the one she saw in Trento. Her department is also introducing learning contracts and diaries for nurses new to clinical trials. In early 2010, the two EONS travel grants of € 2500 were publicised and attracted many high-calibre candidates. The two winners are Mrs Mette Amundsen, a leading oncology nurse at the Vestfold County Hospital Breast Center, Tønsberg, Norway who will be doing a two-week visit at the Breast Service, at the Memorial Sloan-Kettering
Cancer Center in the US and Dr Sevcan Atay, a patient education nurse at the Hacetteppe Universitesi Onkoloji Hastanesi, Ankara, Turkey who will be hosted by the University Hospital of Birmingham in the UK for 4 weeks. The 2011 grant process will begin soon. Anyone interested in applying should watch for details on the EONS website http://www.cancernurse.eu/awardsgrants/ clinical_travel_grant.html
An Experience of a Life Time Alessandra Milani was delighted when she heard sheâ€™d been awarded an EONS Clinical Travel Grant. A few months later she left her home and job to attend Trento Hospital for a month. She recalls her learning experience. aving left Milan for Trento I arrived and stayed in a small flat surrounded by vines with no radio or television. So every evening I had ample time to think, reflect on the day and write my diary. Trento Hospital is an outstanding example of tutorship in Italy due to its collaboration with McMaster University, Canada. In the department of oncology they are testing new teaching methods for student nurses in elementary and advanced courses. They are also exploring new professional training approaches for expert nurses to become coaches/mentors. I am a research nurse in Phase I clinical pharmacology studies and I often follow the work of staff nurses. Until two years ago, nurses in Italy worked a lot with randomised clinical studies, but there were very few surveys done about their work. I believe that we cannot develop our profession without recognising the learning needs of young nurses and improving our teaching skills. Nurses must add new skills and competences regarding patient care, reporting data and clinical trial management. In research, we are both the educated and educator at the same time, so it is very important that expert nurses learn to transmit their knowledge, becoming mentors or coaches. At Trento Hospital I started the day by following my tutor in the medical and oncology wards, and in the afternoon I attended university activities such
as briefings, objective structured clinical examinations (OSCE), evidence report presentations, and debriefings. In the evening I concentrated on writing my diary, a daily exercise which helped me develop a lot of skills in observation, documentation and reflection as well as retention. I discovered that the first objective of clinical tutorship concerned me, and my ability to change not only in knowledge and skills, but in a more general sense, using reflectivity to build a personality, not only professional but personal too. Briefings also played a major part, where tutors explained the learning contract, the educational opportunity and the evaluation system, the established and shared standard objectives. Another useful instrument in clinical education
Emergency Department of the Santa Chiara
is the self-learning plan, where as students we define our objectives and the strategies that can help us achieve them. This also requires a space to write up feedback, which must be clear, objective and directed towards behaviour or actions, and given in real time. Today I still write my diary because, although my study travel is over, my learning is not. I suggest the use of a diary to all students and new recruits who arrive in our cancer centre. Two months ago I became head of professional development of nursing education and research at the European Institute of Oncology, Milan. The experience away has provided me with a toolkit to carry out this important function, and has been key in influencing many changes in my hospital, including an educational programme for nurses involved in clinical trials, the introduction of learning contracts, self-learning plans and a diary for new recruits during their probation period, and more recently an educational study programme for expert nurses to develop tutoring skills accredited by EONS. During my period in Trento, I had a lot of opportunity to see, read and reflect. I would like to thank my mentor, Luisa Saiani, and the tutorsâ€™ team of Trento, in particular my tutor Elisa Lechthaler and the chief Anna Brugnolli, who helped me to translate this opportunity into a learning experience.
Hospital, Trento, Italy
Patients Know Best: Deciding on End-of-life Critical Care Making your preferences about medical care known before you become unable to make medical decisions can increase your peace of mind and your sense of control over your death. This is known in some countries as an Advance Directive. Jim Boumelha asks Jane Seymour to explain the issues involved. What is an Advance Directive and how would it work in clinical practice? Advance Directives (ADs) are usually instructions from someone anticipating a future loss of capacity – often known as a ‘living will’ – which set on record views about specific treatments. Those that set out an advance refusal now have legal force in most countries when assessed as valid and applicable. In England and Wales, these are called ‘advance decisions to refuse treatment’ (ADRTs) under the provisions of the Mental Capacity Act of 2005. Advance directives are one possible outcome of the process of advance care planning, an ongoing discussion between patients, their close companions and clinicians about goals of care and particular preferences for future care. Other outcomes may include the nomination of a proxy decision maker or the non-legally binding identification of general wishes about future care. I have been involved in developing guidelines that cover the whole spectrum of advance care planning and have been designed to show how clinical staff can initiate advance care planning discussions, record and then use the information correctly when making decisions for people who have lost capacity.
What role can ADs play in cancer care? Advance care planning (ACP) is an important part of enabling transitions to palliative care for everyone with life-limiting illness and can help guide the delivery of care in situations of prognostic uncertainty. There has been in the past a tendency to wait until someone is clearly dying before staff try to broach important issues about arrangements for end-of-life care. ACP promotes the idea that people should be given the opportunity to discuss their prognosis and its implications, so that they can make practical and personal arrangements and get involved in clinical decision-making as far as they wish to. In your experience, what has worked and what has failed? The emphasis on ADs has led to a number of problems. First of all, there is considerable confusion about the relationship between ADs, advance care planning and wider ‘care planning’. Secondly, a whole collection of problems have been associated with ADs, which show that simply providing information preferences for treatment cannot change clinical practice. In addition, ADs assume that all patients are willing to predict
an unknowable future, and of course this is not the case. Recently there has begun to be greater recognition of the importance of the process of ACP discussion. Some research has shown that patients feel more hopeful if they are given the opportunity to take part in such discussions and that surviving relatives report greater satisfaction with care after the patient’s death. What ethical issues do they raise? The main ethical issues involved revolve around the status of advance wishes for care and treatment once a person has lost capacity; the correct use of any advance instruction in clinical decision making on behalf of a person who can no longer make decisions, and the moral issues involved in asking people to anticipate what their future may look like when they are living with a serious and life-limiting illness. There are also a whole set of issues to do with resources for care to meet the future care preferences which people are now being encouraged to voice. What is the legal basis for ADs in the UK and the rest of Europe? The legislation which has made it possible to draft a potentially legally-binding advance decision to refuse treatment is the Mental Capacity Act of 2005. This brings England and Wales into line with other European states by building on the UK Human Rights Act of 1998 which gives further effect in UK law to the rights set out in the European Convention on Human Rights of 1950.
Developing Leadership and Advocacy Skills – The US experience An innovative programme initiated by the US Oncology Nursing Society is training cancer nurses to enhance their leadership skills and become better advocates to influence national health policy.
How to reform the US healthcare system was one of the single biggest topics concentrating the minds of the public and politicians last year. As the debate intensified, nurses were able to make critical contributions to local and national discussions, thanks in part to the role played by the Oncology Nursing Society (ONS), which provided information to oncology nurses about how reform would affect their patients and encouraged members to speak up. This helped them articulate important points about the barriers that patients and families face in accessing cancer care. Healthcare reform is one of many issues on which ONS has invested, for more than a decade, in preparing members as leaders and advocates through a variety of programmes that develop their skills. Whether focusing on leadership abilities or advocacy skills, the aim is to equip nurses as leaders and advocates in clinical practice on behalf of patients and their families. To this end, ONS launched the Leadership Development Institute (LDI), in 1998, which runs courses that consist of a three-day, workintensive conference, followed by 14 months of project development. The idea is to prepare oncology nurses for enhanced leadership influence in work settings, community settings, and within ONS itself. Each year, approximately 50 nurse fellows are recruited into the project. Using the leadership framework developed by Kouzes and Posner,1 the fellows learn that being a leader does not depend on a title and that, as clinicians, they already pos-
Oncology Nursing Society
Brenda Nevidjon and Mary Gullatte
In the lobby. Cynthia Miller Murphy and Paula Rieger of ONS welcome congressman Tim Murphy
sess leadership abilities which they should use when they advocate for patients in their daily practice or facilitate performance improvement teams. Fellows have completed projects in their workplace, for their local ONS branch (chapter), or in the community, as part of the fellowship. The goal of the project is for them to apply new knowledge and practices that enhance their leadership skills. General advocacy is integrated into the LDI, but ONS also has programmes specific to health policy advocacy. The ONS Board sets the health policy agenda, which identifies priorities and is non-partisan. Two key member involvement programmes are ONStat and State Health Policy Liaisons. ONStat is a grassroots response network that keeps members up to date with ONS’s lobbying activities in Washington, DC. State Health Policy Liaisons (SHPLs) are ONS volunteers who communi-
cate with their states’ chapters to keep them informed about health policy issues and are a link to ONS’s Health Policy Director. Education programmes also run at national meetings to instruct participants on the fundamentals of advocacy and on policy issues relevant to cancer care and the nursing profession. In the US, nursing organisations frequently incorporate education in leadership and advocacy into their continuing education activities, because ensuring quality and safety of care and influencing health policy are important components of their members’ practice. The public may trust nurses because of their caring, but the power of nurses lies in their knowledge, competence, clinical judgement and advocacy. Learning how to leverage this power to create change is, and will continue to be, Nursing’s agenda, whether in clinical practice or in shaping national health policy.
Palliative Care is about more than Cancer Care Presidents-in-waiting are often very impatient to get stuck into the job. Sheila Payne, who next
May will take up the reins at the European Association for Palliative Care, is from a much calmer breed. Her vision is unflinching but spurred by a desire to build carefully on the successes of the
past and a diligent programme of reaching out. She speaks to Jim Boumelha. Sheila Payne wants to reach out to different professional groups and her first attention will focus on strengthening multidisciplinary working. “Palliative care has an excellent track record of making sure that patients and families are supported by health and social care professionals, doctors, nurses, social workers, psychologists, pharmacists, physiotherapists, occupational therapists and many others,” she says. She also wants to reach out to people “who don’t have cancer but are approaching the end of life with distressing symptoms, which might be physical, psychological, social or spiritual.” She also favours reaching out for “different age and social categories, in our society.” As Europe is growing older, Sheila Payne believes that “increasingly we will be facing the public health challenge of people approaching the end of life in late old age,” and she champions working more closely with specialist professions like gerontologists. She also empathises with socially marginalised groups, those who live in care homes, or are in prison or homeless, “that we haven’t yet adequately thought about how we can provide palliative care to.” Sheila Payne is full of praise for EAPC’s small secretariat in Milan, which has learned over the years to punch above its weight, working on behalf of 47 associations in 26 countries. She is well aware of the gigantic tasks ahead, leading the multidisciplinary Board from different countries, different interests and expertise, as well as
heading up the congresses and conferences. And she is ready for the life in the fast lane. She has a particular interest in the EAPC research network led by Professor Stein Kaasa in Trondheim, Norway – work that she says must be “taken forward and expanded”, including the good collaborative studies funded at European level. Another big favourite is the work being done by the association’s task forces which deal with clinical, ethical or organisational issues. “They do a great job, specifically on education, medicine, and nursing, and there’s currently one group for psychologists working in palliative care.” EAPC holds a major congress every two years and a conference in between which Sheila
Payne describes as “bringing together the very best in [palliative care] science across the globe, and widely regarded as the foremost scientific conference.” Palliative care has moved on a great deal since the pioneering years of its founders such as Dame Cicely Saunders. Sheila Payne has seen it becoming more and more embedded in national healthcare systems to the point of becoming a major part of mainstream healthcare. At the same time she is aware of the dragons still to be slain. “Policy makers have to open up the gates in society so that dying is not seen as a marginalised failure of medicine … but is something that we talk about in the way that we talk about other life events like birth,” she enthused. At the heart of her efforts will be a constant advocacy for good quality palliative care and a better access to hospices and palliative care services. Sheila Payne is keen to spread the message that “palliative care is about more than cancer care.” In most countries, cancer deaths only represent about a quarter of all deaths, whereas it is estimated that palliative care could potentially benefit 60% of people globally. This means that in most European countries the challenge is actually bigger than what is generally recognised. Her last word was an invitation to EONS nurses to engage more with the research and scholarship and ensure that their voices, skills and knowledge are not just shared with other nurses, but also help influence the agenda.
See you at the
16 th ECCO - 36 th ESMO Multidisciplinary Cancer Congress stockholm, 23-27 SEPTEMBER 2011
Dignity in End-of-Life Care Bridget Johnston, Ulrika Ă–stlund and Hilary Brown
Helping patients die with dignity is a central part of palliative care. However it means different
things for different patients and their families. An initiative to support nurses caring for patients
at the end of their lives has been rolled out in rural Scotland and is proving a great success.
nd-of-life care is the part of palliative care which should follow when a patient is diagnosed as entering the process of dying, whether or not he or she is already receiving palliative care.1 To conserve dignity is central for palliative care,2,3 but in spite of this, people experiencing end-of-life care often fear loss of dignity.4 Dying with dignity has been defined as having one’s human value and worth acknowledged, being cared for with respect and empathy, having a voice regarding one’s process of dying, minimising physical and emotional suffering, safeguarding one’s privacy, being emotionally connected with others, resolving personal affairs, and having access to spiritually sources of support.5 However, dying with dignity means different things for different people,4,6 shaped by an individual’s historical, social and cultural perspectives.6 Care, therefore, should be based on holistic assessments of physical, social, emotional, cultural, and spiritual care needs and other relevant life circumstances.7 Taking into account all these needs, care should comprise a broad range of activities based on an understanding of what sources of distress that might influence the patient’s sense of dignity.4
CONSERVING DYING PATIENT’S DIGNITY
A project to develop an intervention to support nurses caring for people at the end of life was initiated by Bridget Johnston, Senior Researcher at the University of Dundee, Scotland, with the collaboration of Ulrika Östlund, oncology nurse at Karolinska Institutet, Sweden, who spent a year in Scotland working on the project, and Hilary Brown, Macmillan nurse in the West Highlands, Scotland. Harvey Chochinov from the University of Manitoba in Canada, known for his important work on dignity in patients with advanced illnesses, supported and helped develop the project. The aim was to develop and implement an intervention, the Dignity Care Pathway (DCP), initiated by the authors, to be used by community nurses in a rural area of Scotland to conserve dying patients’ dignity, as well as evaluate the acceptability and feasibility of the intervention, based on experiences from community nurses using the tool.
F E AT U R E
the work of Chochinov et al,4,9 was chosen as the framework for developing the intervention. It covers a broad spectrum of sources of distress, and includes three main domains: illness related concerns; dignity conserving repertoire; and social dignity inventory. These domains can be thought of as a therapeutic map, guiding health professionals to structure their care actions with a view to conserving dignity. The model is empirically based on cancer patients’ perception of dignity, and is thought to be flexible enough to consider broad application among patients nearing death, acknowledging their personal, unique differences. In order to provide evidence on care actions to be included in the pathway, an approach describing evidence-based practice was adopted, which included not just research evidence but also clinical experience, patients’ and carers’ knowledge and the local context and environment.10
THE DIGNITY CARE PATHWAY
In phase 1 of the project, the DCP was developed from a narrative review and from focus group interviews with patients, carers, nurses and GPs to find suggestions on care actions in relation to the Chochinov model of dignity themes. The DCP has been developed so it can be used by community nurses when caring for patients in their end of life, during the whole end-of-life trajectory until the patient’s death. The DCP should be used as often as judged necessary by the nurse or requested by patients or carer to deliver ongoing dignity conserving care. The community nurse makes a prognostic, clinical judgment to decide when to start a patient on the DCP.
Reflective questions. Community nurses discussing the pathway.
The Chochinov model
Firstly, in order to develop a theoretical understanding of dignity conserving care, existing studies and theories were scrutinised8 in a systematic, narrative review. A model of dignity, developed from
The DCP consists of three component parts:
1. Patient Dignity Inventory The first part, the Patient Dignity Inventory (PDI), was developed by Chochinov et al.11 to assess various sources of dignity-related distress. This inventory provides a feasible and reliable way to identify dignity-related distress. Each PDI item is rated on a five-point scale, 1=not a problem; 2=a slight problem; 3=a problem; 4=a major problem; 5=an overwhelming problem.11 In the DCP, it is suggested that items rated 3 or higher should be further explored by the community nurses, in conjunction with the patient and, if agreed, their carers. 2. Reflective Questions The second part involves Reflective Questions, used to learn more about the identified issues, the patientâ€™s ideas and preferences on how to deal with them, and if further actions are needed. Reflective questions can also be an intervention, in themselves.12 Besides using the questions provided, community nurses are encouraged to use them as examples for developing their own reflective questions suitable for the conversations they are having.
All the evidence suggests that the DCP has proved to be a crucial
tool for nurses to help them bring
out sensitive issues
3. Care Actions The third part, Care Actions, are intended to be used in discussions with the patient and, with patientâ€™s agreement, their family, and undertaken based on the patientâ€™s preferences. When the aim is to conserve dignity, it is especially important that patients are given a voice regarding their own care, as a way of treating them as equals, with respect, and to acknowledge their human value and worth.5 Finally, community nurses evaluate whether the interventions used have been effective by using the PDI again, if judged appropriate. This helps to maintain continuity, as well as identify issues that have recently arisen. When new concerns are identified, the circle of care will continue using the reflective questions and suggested care actions.
EVALUATING THE DCP
In phase 2, the implementation and use of the DCP were qualitatively evaluated by nurses using the tool. A manual was developed for this purpose describing dignity in end-of-life care, the evidence base of the DCP, and the supposed use of the DCP to deliver ongoing dignity conserving care. An educational programme on dignity conserving care in general and the use of the DCP in particular was conducted. In addition, a session on practising communication skills was carried out, since effective and excellent communication is central for the care actions suggested in the DCP. Community nurses involved in end-of-life care at the study units were invited to participate in the educational programme, to use the DCP, and to participate in the evaluation study. The first stage of the evaluation of the DCP is ongoing. The current phase involves a qualitative evaluation using multiple methods, including individual interviews, focus group interviews, reflective diary, where the community nurses record significant events occurring during delivery of the intervention, and case studies. User involvement and patient experience have been an important part of this project. Patients and carers have been involved in the development of the DCP and have provided, and continue to provide, useful comments on its development. Early analysis indicates that all the community nurses have positive and useful comments in regard to their use of the DCP and the training before they used the intervention. Difficulties with using the pathway usually relate to communication issues when the patient is not yet at the stage they can discuss their future and their impending death. After all interviews have been finalised and analysed, the DCP and its implementation will be further developed in accordance with the findings. All the evidence suggests that the DCP has proved to be a crucial tool for nurses to help them bring out sensitive issues, important for people in their end of life. The reflective questions and suggested care actions can give nurses evidence based means to address distress in a supportive way. If the DCP is shown to be feasible and acceptable for nurses to use, the next stage will be to continue testing the tool and adapt it for use in other cultures in the near future. Details of the references cited in this article can be accessed at www.cancernurse.eu/communication/eons_newsletter.html. This project has been funded by grants from the Centre for Health Care Science at Karolinska Institutet, Sweden, the Swedish Council for Working Life and Social Research and from the Queens Nursing Institute, Scotland.
L.Verhoeven , PTZ Aalst, Belgium.
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Networking in Palliative Care The experience of Palliatieve Hulpverlening Antwerpen Care of cancer patients has come a long way in Belgium in the last two decades. To ensure that patients receive the best possible care, the various palliative care services have been brought under a system of regulation. The resulting networks are now a major hub of activities delivering palliative care for patients wherever they are. The first specialist palliative care services in Belgium â€“ a country of 10 million people â€“ developed autonomously, without coherent policy, and were therefore isolated from the rest of the health system.
Tine De Vlieger
At the beginning of the 1990s, the Belgian health authorities decided, to put an end to this situation by legislation, that
determined the number, mission and modus operandi of the various palliative care services, as well as how they should link to one another. Palliative care was therefore built from the bottom-up, based on the many working groups where pal-
Network partners are like bridge builders
SETTING UP THE NETWORKS
In 1997, stimulated by these pioneers, the Belgian government started setting up the regional networks for palliative care. Today there are 28 networks and Palliatieve Hulpverlening Antwerpen is one of them. Their structure – a geographic model with centres for coordination – is innovative and relatively unknown in other countries in Europe. This structure was formalised in 1997 and still exists today because of the government’s conviction that it offers added value and cost-effectiveness. Central to their work has been the development of covenants between government and national and regional palliative care organisations, which regulate tasks and finances and where national guidelines and palliative care standards are set. In general terms, a network can refer to any interconnected group or system. More specifically, a network is any method of sharing information between two systems that ensures people are made aware of palliative care and caregivers can receive support through the co-ordination offered. Palliative care therefore has to involve an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. Everyone must have the option to die in his or her preferred setting. To achieve this goal, it is necessary to provide an umbrella organisation that operates through co-operation at the organisational and professional level. A network aims to empower caregivers and improve their expertise.
MULTIDISCIPLINARY SUPPORT TEAMS
In 1998, the Belgian government determined the minimum criteria for multidisciplinary teams to provide palliative care for
patients at home. These teams were linked through a network that supports their efforts through clear and professional advice and expertise. A network can, for example, deliver guidelines and tools for the support teams and other care organisations to use. A further ambition is to bring caregivers, professionals and non-professionals (such as volunteers), together in groups who meet on a regular basis to reflect on how to disseminate palliative care culture in the region and how to improve co-operation, interprofessional teamwork and to learn from each other. Through the shared challenge to help palliative patients, caregivers are stimulated and helped to make connections and strong bonds.
Tine de Vlieger, palliative nurse educator, facilitates a group developing European nurse education tools.
Support for the care of palliative patients at home, their families and caregivers is given by a multidisciplinary homecare team of the network. Network partners are like bridge builders. They are continually accessible and have a lot of contact with the fieldworkers as well as with patients and their families. As ‘gate keepers’ they are always on the lookout for signals, trends and major problems concerning palliative care. They give information, advice and support to everyone with needs relating to palliative care. Newtwork partners are general practitioners, nurses, social workers, psychologists, volunteers and administrative personnel. Through co-operation, they make sure that the network’s responsibilities are translated into practice. Through the process of networking, partners are well placed to help caregivers improve the development of palliative care choices. It doesn’t matter where the patient is. If necessary, he or she can receive palliative care at home, at a daycentre, in hospital, in an elderly care home, in a palliative care unit (a hospice) or in places where persons
L.Verhoeven , PTZ Aalst, Belgium.
liative care professionals and volunteers met and exchanged experiences back in the late 1980s.
F E AT U R E
with physical handicap or learning disability live. The caregivers can fall back on the partners of the network for advice and concrete support. Partners are able to undertake education programmes, and any organisation can ask the network for recommendations to inform patients, families and the general public about palliative care and accessibility to its services.
Challenges can highlight areas for network development and improvements. Challenging issues for the future include: Eliminating blind spots: An accurate registration of network activities and the needs of society should inform about blind spots and how to tackle them. Advance care planning: An advance care plan offers the patient an opportunity to say now what life-prolonging medical treatment they would and would not want
in the future. To receive palliative care is one of the wishes the patient can point out in an advance care plan. To be available for everyone with needs in palliative care and end-of-life issues: How to maintain the development of palliative care in each region and how to develop a timely intervention for all the people in need of palliative care support remains a major challenge. Actions to make people aware of palliative care and to invite them to co-operate to increase global access will continue. Enhance ‘one voice – one vision’: Professionals need to collaborate so they can easily put into practice new developments and initiatives. A network for palliative care is in the process of developing this further, aiming to fulfil the European Association for Palliative Care’s mission to achieve ‘one voice – one vision’ for palliative care, not only at a regional level but also at national and international levels. Recruiting and supporting volunteers: Volunteers make a significant contribution to the care of people with life-limiting illness and their families. They are highly valued members of a network for palliative care and the continuing recruitment of potential candidates should be maintained. A policy to support and care for the volunteers connected with the network is essential. Providing and co-operating in educational programmes and scientific research: A big achievement for any network is to provide high quality educational programmes in co-operation with high schools, universities and centres for education. As the regional
HEALTH POLICY There are 15 palliative care networks covering Flanders (one per 400,000 inhabitants). Each has a multidisciplinary palliative home care team (specialised nurses, physician, psychologist or social worker), that support the regular home care professionals. ● Palliative care has been built from the “bottom-up”, involving working groups set up since the late 1980s where palliative care professionals and volunteers meet and exchange experiences. ● Covenants between the government, national and regional palliative care organisations developed that regulated tasks and finances and set guidelines and standards. ● Palliative care and euthanasia are not considered antagonistic but complementary. The law on euthanasia was accepted in 2002, but also was the law on palliative care. ●
(Extracts from the EAPC Palliative Care Euro-Barometer 2005)
centre of expertise, they can work out relevant programmes for different professionals in palliative care. Those programmes will train and educate the applicants in palliative care issues using robust clinical data and research. Debating with the government and policymakers: A network is the primary focus for information and guidance on palliative care in Belgium. Networking offers an opportunity for policymakers, the government and the networks to improve the socialisation of palliative care and ultimately, the care of patients and caregivers in the region. Details of the references cited in this article can be accessed at www.cancernurse.eu/communication/eons_newsletter.html
Monitoring Patients’ Status in Advanced Cancer Why use a measure and how to choose one? Using precise measurement tools helps assess patients’ health status, determine its effectiveness
and plan care. The Palliative Outcome Scale is one, now widely used in palliative care. Richard Harding
s cancer moves into an advanced stage, the timely introduction of palliative care is essential to ensure that the multi-dimensional problems faced by patients and families are discussed and properly managed. Dame Cicely Saunders, founder of St Christopher’s Hospice at Sydenham in south-east London and of the modern hospice movement, developed the concept of “total care” for cancer patients facing the end of life. She strongly believed that care should address the “whole patient” – their physical, psychological, social and spiritual problems. The development of palliative care, as an essential component of cancer care, raised awareness that sometimes these areas of concern are not always discussed, and that great improvements could be made in how they are managed. There is ample evidence showing that cancer patients, and their families, experience a wide range of burdensome problems. The multi-professional clinical team needs to find routine, simple mechanisms to ensure that all areas of need are monitored. Why use a measure and how to choose one? In a busy setting, it is important to find simple and effective ways to measure the health status of our patients. Measurement tools should reflect the dimensions of patient and family problems, and should be able to show if particular problems are worsening or improving. It is also important that they are quick to use and have been subjected to rigorous
scientific testing, so they can be used with confidence. If patients’ outcomes are not measured then it is hard to demonstrate what difference the care being offered is making and to decide what additional course of action may be needed to control problems. Sometimes clinicians can find it hard to ask about the “difficult” topics such as worry, family anxiety, and
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how much patients feel life is still worthwhile. Relying on a simple tool is a reminder to ask about the things that matter. Having a ‘structure’ that addresses all the important areas of palliative care makes it easier to address subjects that some people may find difficult to broach. The Palliative Outcome Scale (POS) was developed in response to the lack of reliable tools that reflect the specific goals of palliative care. The literature showed a lack of such palliative-oriented tools for routine practice, and the POS aimed to offer a simple way of measuring outcomes. This may be for assessment, to monitor patients over time, to evaluate the effectiveness of interventions or services, to audit care, or for research studies. The POS was fully validated in palliative patient populations, including diverse care settings such as hospital, community, in-patient hospice, outpatient, day care and general practice.1 It reflects the concerns of patients and staff, can demonstrate change in patient status, is stable enough to not pick up clinically meaningless change in stable patients, and is brief to use. The POS consists of 10 items that address the domains of palliative care for patients and families, and comes in both a patient-completion and a staff-completion version. It also has space to record the two problems of greatest concern for the patient. The POS is free to use, and simply requires registration as a user.
There are a wide range of POS versions, from the POS-S which is an additional version focusing specifically on symptoms, to the POS-MS for patients affected by Multiple Sclerosis. POS has been adapted into several languages, from Spanish to Hindi and German, and there is an Argentinean and an African version – the APCA African POS.2 In developing POS into new languages and settings, the use of sound translation and validation procedures remains a major objective. To date, POS data have been published in a wide range of diagnostic groups, including cancer, HIV, renal disease, the elderly and respiratory disease.3
Taking the time to measure precisely the
health status of patients across many domains
ensures that what matters most is discussed ACCESS TO POS
Registering for POS can be done at www.csi.kcl.ac.uk/ postool.html, where examples of publications using the POS, the POS Users’ Guide, and information on the Support Team Assessment Scale (STAS) are available. A European Commission-funded co-ordinating action called PRISMA (www.prismafp7.eu) offers resources and a network of experts to support the wider POS-using community. PRISMA brings together leading experts from across Europe and Africa to drive forward best science in end-of-life measurement focusing specifically on the POS. The aim is to bring better end-of-life cancer care to European citizens in a way that reflects their priorities and preferences at end of life while taking account of the cultural diversities of European populations.4 A new free and simple resource to support those wishing to measure their patients’ outcomes in routine practice is the POS and POS-S booklet. The booklet is a PRISMA resource developed by Portuguese experts, and consists of a simple booklet that includes basic POS background and instructions, a score card, and all patient, staff and symptom versions of the POS. It is designed to fit simply and easily into a pocket or folder to ensure it is always to hand when seeing patients. It is for any member of the multi-professional team to complete. The POS/POS-S booklet can be freely downloaded from the PRISMA website, and the booklet has its own website at www.wp5booklet.pt.vu.
MEASUREMENT CAN MAKE A DIFFERENCE
Experience with staff and patients shows that taking the time to measure precisely the health status of patients across many domains ensures that what matters most is discussed, and helps plan patient care and determine its effectiveness. Among the many measures in existence that focus on specific outcomes, such as pain or depression, POS has emerged as a brief and widely used tool that is relevant to the concerns and problems of palliative care patients. Combined with PRISMA resources it can be used to devise simple ways to assess patient and family cancer needs for palliative care.
The POS POS evolved using work by a multi-professional project group with individuals in different palliative care settings and a patient representative. It was then piloted in hospice, home, hospital and other community settings and the questionnaire covers physical and psychological symptoms, spiritual considerations, practical and emotional concerns and psychosocial needs. There are two versions of the POS questionnaire, one for patients to complete, the other for staff, and bringing them together allows the POS to identify patient's problems and enables staff to provide individualised care. (From a briefing by the Cicely Saunders Institute)
Details of the references cited in this article can be accessed at www.cancernurse.eu/communication/eons_newsletter.html
Building up Competencies in Palliative Care
A Swiss national strategy
Claudia Gamondi, Catherine Hoenger and Thierry Currat
A national strategy has been initiated in Switzerland to coordinate the development of
palliative care. Its first step was to ask a group of professionals to establish a comprehensive catalogue of competencies for health professionals involved in palliative care. alliative care in Switzerland has become increasingly developed since the end of the 1980s with more units opening, the development of hospital and community palliative care mobile teams and the creation of the National Palliative Care Association (palliative-ch; see www.palliative.ch). The question of whether palliative care should be recognised as a stand-alone specialty by the national nurse and physician professional associations has been the subject of a wide debate. From an educational perspective, the development of the palliative care cantonal programmes, the creation of undergraduate, postgraduate and continuing professional development and the introduction of palliative care curricula for the majority of healthcare professionals
have contributed greatly to the development of palliative care in Switzerland. Until recently, these developments were largely the result of regional and cantonal efforts, or even individual initiatives, with no national overview. As a result, palliative care varied greatly across the country. In 2009, the Federal Office of Public Health (BAG) initiated a national strategy1 to coordinate the development of palliative care, focusing on its recognition by medical insurance companies, research, education and public awareness. In this context, palliative-ch commissioned its working group for education, SwissEduc, to develop a comprehensive catalogue of competencies for health professionals most frequently involved in the delivery of palliative care
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such as nurses, physicians, psychologists, social workers, chaplains, and complementary and supportive therapists (specifically art therapists). The catalogue (or repository) aims to fill the gap in the description of palliative care competencies in postgraduate education and can be used for a variety of different aims including: ● guidance and evaluation of learning (identifying the learning objectives of a course); ● career development; ● recruitment /selection of human resources; ● work re-design; ● performance evaluation; and ● resource planning.
THE DACUM PROCESS
The approach to creating this catalogue of competencies derives from the Canadian DACUM (Developing a Curriculum) methodology which has been used in general workforce planning and healthcare in particular. The process brings together a group of professionals who discuss their work practices as a form of occupational analysis, enabling shared learning to be pieced together on the basis of real activity rather than simply an ideal. The underlying philosophy of the DACUM method is that practitioners themselves are the most appropriate people to define the competencies necessary for their own practice. This method equally takes account of local needs and current practices. In this case, the DACUM method was adapted to take account of existing international reference documentation in palliative care, specifically: ● Recommendations of the European Association for Palliative Care (EAPC) for the development of postgraduate curricula leading to certification in palliative medicine;2 ● The structural plan for the development of stakeholder competencies in palliative care, Ministry of Social Health Services of Quebec (Plan directeur de développement des compétences des intervenants en soins palliatifs, Ministère de la Santé des services sociaux du Québec).3 ● Recommendation of the EAPC on professional competencies in palliative care for psychologists. Facilitators prepared the sessions using the documents cited above, which served as a guide to the reflective process. This approach made it possible to quickly establish a repository of competencies which integrated pre-existing documents in a more comprehensive way than was previously possible, while taking into account national practice. Participants were selected on the basis of profession, regional language, place of work and, most important, level of expertise. The process of deliberation of the
competencies also involved the presence of international palliative care experts for validation of the skills-base needed for palliative care service delivery. Competencies were obtained through a series of workshops involving: ● Physicians and nurses practicing in hospital and community-based consultancy teams or in-patient palliative care units; ● Psychologists, social workers, chaplains and art therapists working in the same settings; ● Physicians and nurses working at the academic level. For each level of specialisation, 19 main domains containing nearly 350 specific competencies are now available (see table).
For each level of specialisation there are 19 domains: ● Physical dimensions – transferable competencies ● Psychological dimensions ● Anticipation ● Social dimensions ● Cultural dimensions ● Spiritual dimensions ● Ethical dimensions ● Legal dimensions ● End-of-life care ● Family and carers relationships ● Grief work ● Communication ● Teamworking at the interprofessional, interdisciplinary level and networking ● Consultancy ● Personal and professional development ● Training and education ● Research ● Quality ● Development of palliative care
The degree to which these domains are fully developed varies according to the profession and level of specialisation, although most are now considered to be largely complete. Their dissemination is of strategic importance for Switzerland and indeed Europe. Many partners will be interested, from the National Ministry of Health to professional associations and universities. At a European level, Switzerland hopes that this repository of competencies will be used as a reference document so that each country, reflective of their palliative care history and service development, will tailor the competencies to their own needs. A further project, including monitoring developments at national level and future revisions of the competency documents is under discussion.
Details of the references cited in this article can be accessed at www.cancernurse.eu/communication/eons_newsletter.html. The authors of this article wish to thank the participants of each workshop for their professionalism and willingness to collaborate in this project and the Leenaards Foundation Chair of Palliative Care (Prof. Jose Luis Pereira) who first initiated the DACUM process in Switzerland. A special mention is made to Françoise Porchet for her pioneering role in the Swiss development of the palliative care education programmes.
Managing Breakthrough Cancer Pain in Palliative Care
Our Lady's Hospice & Care Services
Deborah Hayden and Pauline Ui Dhuibhir
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The management of cancer-related pain raises important challenges for nurses. Guidelines and recommendations from various palliative care organisations are being updated to help nurses distinguish between the different
Table 1: Breakthrough pain questions3 Onset of pain? Frequency of pain?
categories of pain and administer the relevant medication.
Site of pain? Radiation of pain?
Approximately 70-90% of patients with advanced cancer are reported to have pain.1 It is therefore imperative that nurses have a sound understanding of cancer pain and knowledge of how to assess and manage it. Central to this, is appreciating two distinct types of cancer pain. One is ‘background pain’, which is a continuous/ persistent type of pain, requiring around-the-clock medication to provide relief (Fig.1). The other is ‘breakthrough pain’ which is prevalent among 40-80% of oncology patients.2
WHAT IS ‘BREAKTHROUGH PAIN’?
As there is no widely accepted definition for breakthrough pain within clinical practice and the literature,3 confusion still exists regarding what it really is. The Association for Palliative Medicine of Great Britain and
Quality (character) of pain? Intensity (severity) of pain? Duration of pain? Exacerbating factors? Relieving factors? Response to analgesics? Response to other interventions? Associated symptoms? Interference with activities of daily living?
Ireland (APM) recently published evidencebased, practical clinical guidelines for the management of cancer-related breakthrough pain.3 Revising earlier definitions, the APM defined breakthrough pain as “a transient exacerbation of pain that occurs either spontaneously, or in relation to a specific predictable or unpredictable trigger,
Fig. 1. Treating persistent background pain
despite relatively stable and adequately controlled background pain”3 (Fig. 2).
Fig.2. Incident pain in cancer
An APM taskforce described breakthrough pain as often multi-faceted. It may be related to a variety of causes (cancer- or treatment-related), and different pain pathophysiologies (nociceptive, neuropathic, or mixed pain). Breakthrough pain is usually classified as either: ● Spontaneous pain – occurs unexpectedly and so is unpredictable; ● Incident pain – can be related to specific events which may be voluntary (walking), involuntary (coughing) or relate to a procedure (wound care).
Using a holistic palliative care approach to assess cancer pain, nurses will appreciate that every patient’s pain is a unique subjective experience. Nevertheless, the APM taskforce reports that breakthrough pain often shares the following features: ● occurs frequently (a mean number of four episodes per day); ● has a rapid onset;
has a short duration (around 30 minutes); is moderate to severe in intensity; has worse psychological/functional outcomes; and has a less positive response to opioid therapy.
Table 2: Summary of the recommendations for the management of cancer-related breakthrough pain3 1 2 3 4 5 6 7 8 9 10 11 12
Patients with pain should be assessed for the presence of breakthrough pain. Patients with breakthrough pain should have this pain specifically assessed. The management of breakthrough pain should be individualised. Consideration should be given to treatment of the underlying cause of the pain. Consideration should be given to avoidance/treatment of the precipitating factors of the pain. Consideration should be given to modification of the background analgesic regimen/around the clock medication. Opioids are the “rescue medication” of choice in the management of breakthrough pain episodes. The dose of opioid “rescue medication” should be determined by individual titration. Non-pharmacological methods may be useful in the management of breakthrough pain episodes. Non-opioid analgesics may be useful in the management of breakthrough pain episodes. Interventional techniques may be useful in the management of breakthrough pain. Patients with breakthrough pain should have this pain specifically re-assessed.
There is no universally accepted cancer pain assessment tool4 and no validated clinical breakthrough pain assessment tool. Therefore, the APM recommends that standard pain questions are asked in order to determine the clinical features of breakthrough pain (Table 1) and to facilitate individualised pain management. A key recommendation is to differentiate between patients with uncontrolled background pain experiencing transient exacerbations of pain, and patients with controlled background pain experiencing episodes of true breakthrough pain (Fig.3).
The optimal management of breakthrough pain requires that the underlying cause of the pain is identified where possible. Pharmacologically, breakthrough pain episodes are typically managed with the use of “rescue medications”, which are taken when required, rather than on a regular basis. Normal-release opioids, such as Sevredol or Oramorph, are the most commonly used rescue medication for opioid-responsive pain in Europe. The traditional empirical approach for calculating a rescue dose for breakthrough pain is to first calculate the total 24-hour dose of analgesic
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medication. The rescue dose (commonly known as breakthrough dose) is then calculated at one-sixth of this 24-hour dose: Morphine Sulphate Tablets (MST) 60mg twice daily = 120mg modified-release morphine (total 24-hour dose) MST 120mg /6 = 20mg normal-release morphine (Sevredol or Oramorph) as rescue dose. However, it takes 20 to 30 minutes for an oral normal-release opioid to begin to provide pain relief and 60 minutes for it to reach peak effect. This means that a patient with rapid onset and short duration breakthrough pain (around 30 minutes) may not receive adequate, timely pain relief from a typical rescue dose. In addition, the prolonged duration of the effect of the opiate (3–6 hours) can result in adverse effects. Hence, the APM states that “oral opioids are not the optimal rescue medication for most breakthrough pain episodes”.3 Nevertheless, oral opiods may be considered in the pre-emptive management of voluntary incident pain or procedural pain. If used in these cases, the opioids need to be administered at least 30 minutes in advance of the cause. Nurses should also consider how best to
There is no universally accepted cancer pain assessment tool and no validated clinical
breakthrough pain assessment tool
avoid or treat precipitating factors, such as for example strategies/adaptations to minimise the amount of movement if this is a cause. Common sense would also indicate that, in the case of spontaneous pain or non-voluntary incident pain, the medication should be administered to the patient as soon as the breakthrough pain starts. It is worth remembering however that oral opioids may not begin to relieve the pain for 30 minutes, and the pain may have subsided in the meantime. Currently, many new varieties of fentanyl-based products are being promoted for the effective management in breakthrough pain. Fentanyl is a highly lipophilic drug and is quickly distributed into the central nervous system. This results in fast onset/offset of action, so it may
Fig. 3. Increasing ATC medication may increase side effects
more closely mirror the profile of breakthrough cancer pain. Examples include: ● oral transmucosal fentanyl citrate (OTFC, Actiq); ● fentanyl buccal tablet (Effentora); ● sublingual fentanyl (Abstral) and ● intra-nasal fentanyl spray (Instanyl). However, a panel of experts recently raised concerns about the lack of robust evidence showing that newer fentanyl products give better relief from breakthrough pain than established medications and they cost considerably more.5 They welcomed the availability of new agents, but voiced concerns about the lack of experience and of long-term data. The European Palliative Care Research Collaborative (EPCRC), in collaboration with the European Association for Palliative Care (EAPC), are in the process of updating the World Health Organization6-8 and EAPC9 guidelines for the administration of opioids in cancer pain. It is hoped that an internationallyagreed definition and classification of cancer-related breakthrough pain can be agreed and that a standard approach on how to assess and manage breakthrough pain can be found. Meanwhile, the APM guidelines on breakthrough pain offer nurses practical assistance on the management of breakthrough pain (Table 2). However, it must be remembered that implementation of many of the current APM recommendations is dependent upon nurses defining and assessing breakthrough pain accurately.10 Details of the references cited in this article can be accessed at www.cancernurse.eu/ communication/eons_newsletter.html
The Last and Final Awakening Jo Hockley
What happens to us when we die? From time immemorial, the process of
dying has always attracted immense attention. Here Jo Hockley shares her
mutiple experiences of the reality of death and narrates the many anectodes she has witnessed.
aving worked within the hospice movement for 30 years I have to say that it is the process of dying and the last 48 hours that has actually had the most impact on me. In trying to make sense of the process of death and dying, I have learnt much from frail older people dying in care homes. I have been immensely inspired by Alfred Worcester’s book The Care of the Aged, the Dying and the Dead (1940). His first affirmation is to underscore that, in older people, the process of dying is a progressive not a simultaneous failure of vital organs. Just as we know there is a process in being born, so there is a process when we die. His next point is that, in the majority of cases in older people, there is ample warning about death. Research shows that only 10% of people die suddenly. Worcester stresses the importance of professionals being devoted to the patient rather than the disease, as life nears its closure; insisting that it is the care at the end of life that is important rather than focusing on the futility of cure at this point in the disease process. He then emphasises the role that healthcare professionals should play in seeing the process through until the last breath, seeing to patients’ needs and their symptom control needs. His last tenet concerns pain and how
very little medication tends to be required within the dying process of frail older people. He insists that dying itself is not painful; however, dying with a painful disease will require appropriate analgesics. Recognising dying is also of crucial importance, otherwise we cannot manage the last days of a person’s life appropriately. As John Ellershaw, Chair in Palliative Medicine at the University of Liverpool, points out, it is not difficult to notice clues such as when a person spends more time asleep during the day than awake, or they no longer have an interest in eating and having difficulty taking oral medications. While making sure it is not depression, this natural lack of interest in eating and in drinking alongside a general deterioration where further investigations or interventions are inappropriate, are sure signs of the dying process. We know that thirst receptors in the veins of older people start deteriorating when they are in their 80s, as a natural preparation of a life ending. Frail people often can cope with small amounts of fluid in increased frequency right up to death. Sometimes a piece of damp gauze in the mouth with just some crushed ice will suffice – research has highlighted the inappropriate use of lemon and glycerine swabs. Regularly changing the person’s position in bed is also of crucial importance to counteract any stiffness; dying
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people are too weak to turn themselves. So often we encourage families to sit with the dying person, but we give them little or no explanation about what is going on and where the person is in the process of dying. If we don’t understand that process for ourselves, we are not going to be able to tell others, including the family, when someone is in peripheral shutdown or imminently dying. Peripheral shutdown helps us to recognise that the process of dying has commenced. At this stage it is likely that the person has a day, or so, to live. We recognise the pinched nose, the slight rattling in the chest because the person is now unable to cough up secretions, the breathing is heavy and laboured, and, most significantly, the bluish cold extremities, with the mottling on the hands, the feet and the legs. They feel cold to the touch, but Worcester has evidence that the person doesn’t feel cold and, in fact, restlessness can be caused by heat in the body. In order to manage any symptoms, we must always have access to anxiolytics, analgesics and anticholinergics to cope with any anticipated anxiety, pain or ‘rattly’ chest. A recent audit highlights that less medication is required by old and frail people at the end of life; when it is required often the use of suppositories and individual bolus subcutaneous medication rather than a syringe driver can suffice. Analgesic patches can continue if an older person has had a patch for an arthritic pain, and subcutaneous morphine 2.5 mg PRN (pro re nata; when required) can be prescribed if necessary. As for the anticholinergics to help with death rattle, subcutaneous PRN hyoscine or glycopyrronium may be prescribed. However, often in frail older people a ‘rattly’ chest will not respond to an anticholinergic as it is not fluid in the trachea but a pneumonia that is causing the chest to sound rattly. In such a situation, lying an older person flatter can dissipate the problem. The use of a fan blown across the face in order to stimulate receptors can ease the symptoms of breathlessness. It is also important to keep a light on in the room day and night so that the person can orientate themselves. Peripheral shutdown leads to the next stage of ‘central shutdown’ which shows specific characteristics: the breathing instead of being laboured becomes shallow and the pulse becomes thin and thready. At this point the person often has only hours to live. As a clinical specialist, I have encountered a number of situations that has helped me realise that often people are very aware that they are dying if given the opportunity to tell us. In Edinburgh in 1999, I was asked to see Mr P. who had advanced cancer of the
prostate and who was in for palliative radiotherapy. He told me he was going to die, yet none of the medics thought so – that is why I was called to see him. I listened and thought it appropriate to get the family up from Birmingham despite also believing he was not imminently dying. Within a 10-day period he had died – he knew but I needed to be able to listen. In frail older people one often hears the phrase ‘they have lost the will to live’. However, I believe that dying is a much more active process than sometimes we think, where the most cogent part is choosing the time to go. Kathy was a lady who had moderate dementia and was slowly deteriorating and dying. As the grandchildren came to say their goodbyes, she told them she saw her dead brothers at the bottom of her bed as though she had one foot in the other world and one foot in our world. But, she didn’t seem able to die. We realised that Kathy had had a very strong faith and despite the family giving her permission to go it was the vicar who was eventually called that gave Kathy the peace to pass on. Five days later, she died a couple of hours after his visit.
If we don’t understand that process for
ourselves, we are not going to be able to
tell others when someone is in peripheral shutdown or imminently dying
Out-of-body experiences and heightened consciousness are commonly written about in neardeath experiences and the process of dying. Some people who have been depressed all their life experience a lifting of their depression just before they die. Some with dementia often have a clarity that they have lacked for a while. In trying to pull together some sense of what is going on in the unseen aspect of dying, we can, if we are more open to it, engage more with people in that process. What is certain is that sedating people at the end of life will not help us understand the process taking place in the last 24 hours. As Walter Scott says “Is death the last sleep? No! it’s the last and final awakening.” Jo Hockley is a Nurse Consultant for Care Homes heading up the Care Home Project Team at St Christopher’s Hospice, London and is involved in education, practice and research. This is an excerpt from a lecture she delivered at a masterclass at the Dutch National Palliative Care Congress in September, 2010.
Palliative Care for Older People As people in Europe live longer, provision of palliative care for the elderly needs constant re-assessment. New tools are being developed to promote a palliative culture anchored in increased collaboration between care providers and volunteers of the hospice movement. Katherine Froggatt and Katharina Heimerl
Western society is ageing. The population of the world in general and in Europe in particular, is growing older. If the current trends continue, then by the year 2050 more than a quarter of the people living in developed nations will be over 65 years old.1 Quality end-of-life care increasingly has to be understood as quality care for old and very old persons, as most people who die in our society are well advanced in years. The German database Gerostat indicates that, in the year 2008, more than 75.2% of all men and women who died in Germany were 70 years and older, 50% were 80 years and older, and 14.3% were 90 years and older. Similar figures exist in the UK for England and Wales.2 In 2008, 65.5% people who died were 70 years and older, 53% were 80 years and older and people aged 90 years and over accounted for 17% of deaths. It has been increasingly recognised, over the last 10 years, that older people310 need palliative care in a variety of living situations. Three issues are of particular concern:
1. When should palliative care start with an older person?
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness”.11 Whereas, by this definition, palliative care starts when an “incurable” diagnosis is confirmed, this is not necessarily applicable for old age. Old age itself is not a life-threatening illness. However, older people are in need of palliative care when multiple conditions and/or dementia pose a burden upon individuals in terms of pain and symptoms (physical, psychological, social or spiritual).3 In certain cases, palliative care for older people can therefore be applicable years before death.
2. Persons with dementia
For many older people, dementia becomes a part of their experience of ageing and dying. Specific challenges in providing palliative
care for this group of people include the assessment and management of pain and other symptoms, care when people can no longer eat or drink and the processes of care and treatment decision-making.12 Alongside these practical challenges lie more fundamental questions about the nature of self and the preservation of personhood,13 which shape the values that underpin the care provided to people with dementia towards the end of life.
3. Persons in long-term care institutions
Long-term care institutions, such as nursing homes, care for increasing numbers of dying residents and this trend will continue.4 Many obstacles hinder the successful implementation of palliative care in
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ples of such interventions feature in the discussions carried out by staff with nursing home residents about their needs with respect to dying and death.14
COOPERATION BETWEEN CARE PROVIDERS
In addition to such project-based approaches to implementation, another Germanic model centres on cooperation between care providers from hospices or specialised palliative care services and nursing homes. In most cases, this involves the collaboration with volunteers of the hospice movement. In the UK, the national End-of-Life Care Strategy promotes the use of particular tools, such as end-oflife care pathways and the Gold Standards Framework for Care Homes,15 (GSFCH) which, when supported by educational initiatives, require attention to wider systems by these settings. The challenge of how to overcome these obstacles has been widely discussed within the German-speaking realm and a number of different approaches have been pursued in recent years.4,14 Managers of nursing homes have involved themselves with this issue through measures to raise awareness and provide special training, activities involving nursing home residents, cooperation with relevant partners, such as undertakers and doctors on-call, or through comprehensive development projects. In these projects palliative care is not seen as an isolated action, as would be the setting up of a training programme. Far more common is the scenario in which various tools are developed and used to promote a palliative culture. Well-documented exam-
structured management of individual’s care planning and management. The experience of implementing end-of-life care strategy in hospices and palliative care in long-term care settings has demonstrated that collaboration between geriatrics, gerontology as well as palliative care and hospice work is essential. The responses to the situations and contexts outlined above have been increasingly innovative and collaborative. The recent WHO booklet, Better Palliative Care for Older People: Better Practice,1 provides not only a comprehensive overview of key issues but also examples of good practice that seek to address the whole system for care provision. In order to maximise the knowledge, skills and resources to the benefit of older people, living and dying with whatever condition or conditions, ongoing collaborations are required across the fields of gerontology, geriatrics and palliative care, and hospices and across national boundaries. This can only be to the benefit of older people and their families. Details of the references cited in this article can be accessed at www.cancernurse.eu/ communication/eons_newsletter.html Katherine Froggatt works at the International Observatory on End of Life Care, Lancaster University, UK. Professor Katharina Heimerl is employed at IFF‐Palliative Care and Organisational Ethics, University of Klagenfurt, Austria.
Some key features of the GSFCH programme ●
● ● ● ● ● ● ●
A ‘culture shift’ of greater staff confidence, competence and awareness of patient needs Perceived better quality of care provided for all residents from admission to death or discharge Advance Care Planning discussions for all residents from time of admission, and identification of their need and stage of illness, using coding assessment Improved collaboration with visiting GPs and out of hour’s doctors Fewer crisis hospital admissions, leading to more dying peacefully in the home Better coordinated organisation and recording of care Better communication and collaboration with GPs + others Improved support and involvement of families ‘Learn-as-you-go’ education focussed on needs of staff, supported by specialists Better preparation for dying and use of protocol/pathway.
(from a briefing paper by the GSFCH central team)
Unbearable Suffering Defining a concept with undefined parameters Unbearable suffering is a term sometimes used to describe the situation of some patients with terminal cancer. But what does it actually mean. A Dutch study brought together professionals and nonprofessionals in an attempt to find out.
Jaap Gootjes, Wouter Zuurmond and Roberto Perez
The concept of unbearable suffering is used by both professionals in palliative care and by non-professionals when they are in contact with terminally ill patients. However, there is still no consensus on how to define it. Even Dutch jurisprudence for end-of-life medical decisions mentions unbearable suffering but does not define it. A research study using the Delphi methodology, involving panels of professionals and non-professionals, set out to find an answer to the question: how do medical and paramedical personnel and
people who are not involved in health services (non-professionals) define unbearable suffering both for themselves and for terminally-ill patients? Two panels of sixteen participants were selected from across the Netherlands. The first comprised eight medical practitioners and eight nurses, all of whom had worked for several years in palliative care. The second panel included 16 non-professionals – eight men and eight women – in different age ranges and with differing religious and educational backgrounds. They were asked to respond to four written rounds of questions. Twelve
members of the professional panel and ten members of the non-professional panel finished all the four rounds of questioning. The main questions concentrated on finding concepts to define unbearable suffering.
Panel members were asked to answer two questions: ● How would you describe unbearable suffering for yourself? ● How would you describe unbearable suffering for your fellow human beings who are terminally ill?
F E AT U R E
Both panels provided different answers for themselves and for terminally-ill patients. The panel of professionals mentioned fifteen different items for themselves and also fifteen items for their fellow human beings. There were a number of answers that were comparable and they were considered as one item. This resulted in seven answers for unbearable suffering for themselves and nine answers for unbearable suffering for their fellow human being. The outcome of the panel of nonprofessionals mentioned fourteen different items for themselves and fourteen items for their fellow human beings. There were also a number of similar answers which were considered as one item, resulting in eight answers for unbearable suffering for their fellow human beings.
Table 2. Answers from non-professional participants Unbearable suffering for oneself ●
● ● ● ● ●
Horrible pain which cannot be treated with medication (8.8; 1-9; 87.5%) Being kept alive artificially by medical machines and food, whether conscious or not. When you need help for everything because you cannot do it yourself anymore. Next to this a lot of pain (7.3; 1-10; 87.5%) A combination of symptoms without hope for improvement and recovery (6.9; 1-10; 87.5%) Pain Loneliness Panic/anxiety Failure of body functions and/or sensory Negative change in character
i ii iii
When he/she indicates repeatedly that he/she is in horrific pain and that medications does not work or hardly works (6.8; 2-10; 87.5%) Being kept alive artificially, whether conscious or not. Total dependence and leading a degrading existence, due to failure of elementary body functions (7.3; 2-10; 87.5%) When the following three aspects are present (7.6; 2-10; 87.5%) Everything revolves around suffering, no room for anything else. These expressions are there continually. There is no room for other thoughts/feelings, not even with help from others.
percentage of the panel who answered the question.
In the second round of questioning, panel members were asked to rank all the answers of their own panel on a scale from 1 to 10 – where 1 was considered to be “not important” and 10 “most important”. They
Unbearable suffering for oneself
Unbearable suffering for others
The burden is beyond the capacity to cope. It dominates my existence (6.9; 4-9; 75%) ● There is no prospect for improvement or no solution for the unpleasant severe symptoms. There is a loss of meaning to life, a loss of dignity and there is psychological suffering (7.9; 2-10; 75%) ● Unpleasant symptoms (physical, psychosocial and spiritual), which I experience as very unpleasant and are more than I can cope with, and cannot be relieved. I do not see a point to my existence and long for death (8.1; 6-10; 75%)
The burden is beyond the means. My fellow human being is the one who indicates/ determines this. Care givers are out of options for care in a hopeless situation (7.8; 5-9; 75%) ● Severe symptoms which cannot be treated in any way. These severe symptoms can both be expressed verbally as well as non-verbally (7.3; 1-9; 75%)
The first number is the average score; the second, the lowest and highest score; and the third, the percentage of the panel who answered the question.
The first number is the average score; the second the lowest and highest score; and the third, the
Table 1. Answers by the professional participants
Unbearable suffering for others
all recognised their own answers and were asked if their answers were correct – all panel members agreed.
In the third round of questioning, panel members were asked about the answers that had scored an average rate higher than 5.5 from round two. The result was three definitions for unbearable suffering for themselves and two for their fellow human beings in the panel of the professionals. For the non-professionals there were also three definitions for unbearable suffering for themselves and three for their fellow human beings (Tables 1 and 2). There was a difference in defining unbearable suffering for themselves and for their fellow human beings. The results of the professionals differed from the results of the non-professionals. The panel members were also asked their opinion concerning the difference between unbearable suffering for themselves and for their fellow human beings. They were also asked whether the items could be combined or should stay separate. There was no consensus in both panels.
In the fourth round of questioning, the professionals were asked to give their opinion on the statements of the non-professionals and the non-professionals on the statements of the professionals. Both panels were surprised when they learned each other’s opinions. The professionals gave a higher score on the opinion of the non-professionals than the other way around. Both panels still gave the higher scores to their own opinion (Tables 3 and 4).
Table 3. Results of professionals evaluated by non-professionals Unbearable suffering for others
The burden is beyond the capacity to cope. It dominates my existence (6.0; 4-9; 57%) ● There is no prospect for improvement or no solution for the unpleasant severe symptoms. There is a loss of meaning to life, a loss of dignity and there is psychological suffering (7.0; 1-10; 57%) ● Unpleasant symptoms (physical, psychosocial and spiritual) which I experience as very unpleasant and are more than I can cope with, and cannot be relieved. I do not see a point to my existence and long for death (6.8; 1-10; 57%)
The starting point of this research was that the concept of unbearable suffering is used by both professionals in palliative care and also by non-professionals when they are in contact with terminally-ill patients, without a clear definition of what it means. In most cases there is a personal meaning but it cannot be generalised. Dutch jurisprudence on legal euthanasia mentions the concept but does not give it a clear definition, leaving open the question of how to deal with it. In the Delphi research, although professionals and non-professionals both gave reasoned and motivated opinions on the concept of unbearable suffering, patients were not asked about the meaning of this subject. It
Unbearable suffering for oneself
The first number is the average score; the second, the lowest and highest score; and the third, the percentage of the panel who answered the question.
would have been impossible to involve terminally-ill patients in this research because of the time that the different rounds of questioning may take. The research found that: ● There is no consensus about the definition of unbearable suffering.
Table 4. Results of non-professionals evaluated by professionals Unbearable suffering for oneself ●
● ● ● ● ●
Horrible pain which cannot be treated with medication (7.4; 6-8; 57%) Being kept alive artificially by medical machines and food, whether conscious or not. When you need help for everything because you cannot do it yourself anymore. Next to this a lot of pain (7.1; 6-9; 57%) A combination of symptoms without hope for improvement and recovery (8.3; 7-10; 57%) Pain Loneliness Panic/anxiety Failure of body functions and/or sensory Negative change in character
The burden is beyond the means. My fellow human being is the one who indicates/ determines this. Care givers are out of options for care in a hopeless situation (7.1; 4-10; 57%) ● Severe symptoms which cannot be treated in any way. These severe symptoms can both be expressed verbally as well as non-verbally (7.1; 4-10; 57%)
Unbearable suffering for others ●
i ii iii
When he/she indicates repeatedly that he/she is in horrific pain and that medication does not work or hardly works (7.5; 6-9; 57%) Being kept alive artificially, whether conscious or not. Total dependence and leading a degrading existence, due to failure of elementary body functions (7.1; 5-9; 57%) When the following three aspects are present (8.4; 6-10; 57%) Everything revolves around suffering, no room for anything else. These expressions are there continually. There is no room for other thoughts/feelings, not even with help from others.
It is unhelpful to use a not yet defined subject like unbearable suffering in the Dutch jurisprudence for end-oflife medical decisions regarding legal euthanasia. ● There is a difference between the way professionals and non-professionals define unbearable suffering. ● Concerning the description of unbearable suffering, most people provide different parameters for themselves than for terminally-ill patients. ● Unbearable suffering is not an unequivocal concept. ● Both panels’ members thought defining unbearable suffering was an interesting topic but difficult to think about. The professionals even indicated that until this Delphi research they had not thought about their own meaning of unbearable suffering, even though they had confronted unbearable suffering in their professional lives. The overall conclusion of the research is that the only thing we know about the definition of unbearable suffering is that we do not know as yet what it is. ●
Details of the references cited in this article can The first number is the average score; the second, the lowest and highest score; and the third, the
be accessed at www.cancernurse.eu/
percentage of the panel who answered the question.
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