Associate Professor of Medicine and Family Medicine, Memorial University of Newfoundland, St John’s, Newfoundland, Canada
Leonie M. Herx
Associate Professor and Chair, Division of Palliative Medicine, Queen’s University, Kingston, Ontario, Canada; Medical Director of Palliative Care, Kingston Health Sciences Centre & Clinical Director of Palliative Care, Providence Care Hospital; Past-President, Canadian Society of Palliative Care Physicians, Kingston, Ontario, Canada
Anne B. Boyle
Associate Clinical Professor, President, Canadian Society of Palliative Care Physicians, Co-Medical Director, Palliative Care St Joseph’s Healthcare, Canada
Enhanced Skills Program Director, Division of Palliative Care Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada
Great Clarendon Street, Oxford, OX2 6DP, United Kingdom
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Foreword 1
In 1988 the Deans of 12 of the 16 Canadian medical schools at the time appointed representatives to a Canadian Palliative Care Curriculum Committee. In 1991 the Canadian curriculum was published and it became one of the first in the world, and the model for most medical schools globally. In 1997 the Canadian curriculum was updated, and at that time it was accompanied by a case-based manual. This manual was the template for the first edition of Palliative Medicine: A Case-Based Manual (1998). From its inception this book has been invaluable to a generation of medical students and clinicians worldwide.
The fourth edition has succeeded in keeping the user-friendly format with case presentations followed by questions and answers, updated to include all major new developments in the field. Drs. MacDonald, Herx, and Boyle have done an impeccable job at editing chapters written by a group of 57 authors from multiple regions, universities, and community programs in Canada.
This is a Canadian book from its very inception, and it emphasizes seamless and universal access to care across multiple settings, harmony between primary and specialist palliative care, and there is a refreshing lack of conflict of interest in all chapters. This book is, in my view, mandatory reading for all medical school students and junior graduates, as well as all clinicians who are likely to see seriously ill patients. Every chapter is self-standing, allowing clinicians to access chapters according to clinical need or interest.
Canadian physicians were pioneers in the development of palliative medicine. Against all odds they created clinical, educational, and research programs with great personal sacrifice. The medical school, health care systems, professional colleges, and hospital administrators were not as supportive of this very Canadian field of medicine, both in Canada and in most of the world. It is refreshing to read in this book the passion for the alleviation of suffering, the energy, and optimism of these 54 authors and three editors.
It is my hope that some copies of this wonderful book will get to the hands of many of the healthcare and academic leaders in Canada and other regions of the world, and that it will inspire them to create the structures and processes needed to implement all this knowledge, and prevent and alleviate suffering close to the end of our lives.
Eduardo Bruera, FT McGraw Chair in the Treatment of Cancer, Chair, Department of Palliative, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, USA
Foreword 2
This lovely book captures the essence of palliative care: an approach to medical care that prioritizes relationships. Human connection. The use of stories to illustrate the human condition and what clinicians can do to alleviate suffering through presence, witness, and attention. The authors make clear that against the harshness of the world, relationships with other people gives meaning, connection, and purpose. The central principle of healing in health care is predicated on a foundation of relationship. More than any other text I’ve seen on palliative care, this work iterates and reiterates the power of human connection and the fact that it is prerequisite to accomplishing any of our good intentions in medicine.
It sometimes feels to me as if the practice of medicine, increasingly subspecialized and procedural and fragmented, has given up on the relationship between clinician and patient as old fashioned, as unnecessary, as too time consuming. The folly of that shortcut is made clear in this book. I hope it is read by people in training as well as those of us in the midst of our careers. It is about the fundamentals. We can all use the reminder and the guidebook.
Philosopher and ethicist David Barnard said it best: “The sting of illness and death is the specter of broken relationships and the loss of the world. Over and against this threat stand the efforts of caregivers and companions to embrace the sufferer and continuously reaffirm his or her capacity for relationship.” (Barnard D. The promise of intimacy and the fear of our own undoing. Journal of Palliative Care 1995;11, no. 4 (December): 22–26.)
Diane Meier Director, Center to Advance Palliative Care, Professor, Department of Geriatrics and Palliative Medicine, Mount Sinai School of Medicine, USA
Preface
Palliative care is a dynamic and changing field. In the early days, when patients were reluctantly referred to us, we often had only days to grapple with challenging symptoms and overwhelming grief. Many patients were seen far too late for effective treatment and it was frustrating and disheartening. We knew our patients could have better care and we felt that they deserved it. As is common in such situations, leaders emerged within our small community of clinicians. They examined the questions we struggled with through a different lens and brought research methodology and scientific rigour to our everyday practice. They challenged us to try harder, try differently, do better, and be better. Slowly, but surely, things improved. We developed a body of knowledge that is evidence-based. We created tools for evaluation and measurement. We devised a curriculum for medical school learners and those already working in the discipline who sought a deeper understanding of our field.
Palliative care is moving into another new and exciting phase. We recognize the importance and benefit of all clinicians becoming equipped to provide a palliative approach to care, to see patients much earlier in the course of their illness, and to have access to specialist palliative care when needed. We have the opportunity to collaborate with our patients and interprofessional colleagues and create care plans that can provide significant positive benefits. Sometimes, those benefits can last for years. We have challenged our understanding of society, ethics, and the individuals we serve. We have expanded our horizons, both externally and internally.
This edition of Palliative Medicine: A Case-Based Manual is a response to the growth and constant evolution in such a challenging and dynamic field. While change is not always comfortable, it is inevitable. We, the Editors, have taken the opportunity to review what is currently known and to consider what is new and developing. We have included a few new chapters—apps and websites, structurally vulnerable populations, for example. We have placed more emphasis on non- oncological conditions as palliative care continues to expand into this domain.
For the purpose of this textbook, the term family refers to whatever community or individuals the patient has chosen to be their primary support. As well, there may be unique cultural and/or spiritual considerations that will need to be taken into consideration for the care of individual patients. Readers are also encouraged to always review and double-check all medications (and look for possible interactions/allergies) for an individual patient before prescribing.
As Editors, we wish to gratefully thank our wonderful authors, who diligently laboured through numerous revisions with grace and good humour. It was a joy to work with all of you. We wish to thank our families, who good-naturedly abided while we learned how to put together this manual. We are also very grateful for the constant guidance and support by our Oxford colleagues, Janine and Caroline.
Despite all the advances, changes in nomenclature, and things that go in and out of vogue, one thing will remain—palliative care clinicians value person-centred care to relieve suffering. We see the importance of quality of life. We accompany our patients and families in their most difficult
times. We are aware that the most important therapeutic intervention we have is the relationship we create with our patients and the culture of caring we establish. For that reason, we wish to take this opportunity to thank our patients. It is a privilege and honour to serve and we are deeply indebted to them. As William Osler said, the best medical education ‘begins with the patient, continues with the patient and ends with the patient’.
Susan
Leonie
Anne
Contents
Contributors xiii
1 Advance care planning and goals of care discussions 1
Jeff Myers and Jessica Simon
2 Opioids overview 13
Pippa Hawley
3 Somatic pain 22
Megan Sellick, Yoko Tarumi, and Sharon M. Watanabe
4 Visceral pain 31
Michael Downing
5 Neuropathic pain 42
Srini Chary, Anne B. Boyle, Leonie M. Herx, and Susan MacDonald
6 Dyspnoea and lung disease 51
Danielle Kain, Susan MacDonald, and Shalini Nayar
7 Nausea and vomiting 69
Bernard J. Lapointe
8 Constipation 80
Tim Hiebert and Stefan Riel
9 Malignant bowel obstruction 91
Carl Bromwich
10 Anorexia–cachexia 101
Vickie Baracos and Neil MacDonald
11 Cancer fatigue 118
Ravi Bhargava and Martin Chasen
12 Delirium 129
Shirley H. Bush, Bruno Gagnon, and Peter G. Lawlor
13 Anxiety and depression 144
Madeline Li, Gilla K. Shapiro, and Gary Rodin
14 Grief and bereavement 157
Alexandra Farag
15 Wounds in advanced illness 167
Cheryl Hurley and Vincent Maida
16 Urological symptoms and complications in palliative care 179
José Pereira
17 Mouth care 192
Samir Azzaria, Marie-Andrée Fournier, and Mélanie Simard
18 Lymphoedema 200
Anna Towers and Marie-Ève Letellier
19 The last days and hours 209
David Henderson and Leonie M. Herx
20 Continuous palliative sedation therapy 219
Leonie M. Herx
21 Radiation therapy: advancing technologies 228
Crystal Hann, Anand Swaminath, and Jonathan Sussman
22 Chemotherapy 238
Rachel Rudney and Paul J. Daeninck
23 Palliative care in heart failure 252
Michael Slawnych
24 Neurological disorders 267
Teneille Gofton
25 Renal failure 281
Hasitha Welihinda
26 Cirrhosis and diseases of the gastrointestinal tract 291
Tim Hiebert
27 Palliative care in the community 302
Anne B. Boyle and David Henderson
28 Palliative care in the intensive care unit 309
Valerie N. Schulz and James Downar
29 Paediatric palliative care 319
Dave Lysecki and Christina Vadeboncoeur
30 Palliative care for structurally vulnerable populations 331
Naheed Dosani and Anna Voeuk
31 Methadone 340
Pippa Hawley
32 Medical cannabis 356
Pippa Hawley and Vincent Maida
33 Interventional analgesic techniques 369
Philip Chan and Kelly Shinkaruk
34 Useful apps and websites 376
Stephen B. Singh
35 Response to suffering 381
Deborah Dudgeon, Leonie M. Herx, and Susan MacDonald
36 Public health palliative care 389
Denise Marshall and Doris Barwich
Index 393
Contributors
Samir Azzaria
Full Clinical Professor, Département de médecine familiale et de médecine d’urgence, Université Laval, Québec, Canada
Vickie Baracos
Professor, Division of Palliative Care Medicine, Department of Oncology, University of Alberta, Edmonton, Alberta, Canada
Doris Barwich
Clinical Associate Professor, Division of Palliative Care, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada; Medical Director, BC Centre for Palliative Care New Westminster, British Columbia, Canada
Ravi Bhargava
Physician Scientist and Faculty, Global Institute of Psychosocial, Palliative and Endof-Life Care (GIPPEC), University of Toronto, Ontario, Canada
Anne B. Boyle
Associate Clinical Professor, President, Canadian Society of Palliative Care
Physicians; Co-Medical Director, Palliative Care St Joseph’s Healthcare; Enhanced Skills Program Director, Division of Palliative Care, Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada
Carl Bromwich
Assistant Professor, Faculty of Medicine and Health Sciences, University of Sherbrooke, Sherbrooke, Quebec, Canada
Shirley H. Bush
Associate Professor, Division of Palliative Care, Department of Medicine, University of Ottawa; Clinician Investigator, Bruyère Research Institute (BRI) and Ottawa Hospital Research Institute (OHRI); Palliative Care Physician, Bruyère Continuing Care, Ottawa, Canada
Philip Chan
Associate Clinical Professor, Department of Anaesthesia, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada
Srini Chary
Consulting Physician, Regional Palliative & Hospice Care, Calgary Zone; Clinical Assistant Professor, Department of Oncology & Family Medicine, Cummings School of Medicine, University of Calgary, Calgary, Alberta, Canada
Martin Chasen
Medical Director, Supportive and Palliative Care William Osler Health System; Associate Professor, Departments of Medicine and Family and Community Medicine, University of Toronto, Ontario, Canada
Paul J. Daeninck
Attending Medical Oncologist, CancerCare
Manitoba, Assistant Professor, Department of Internal Medicine, Max Rady College of Medicine, University of Manitoba, Consultant in Palliative Medicine, Winnipeg Regional Palliative Care Program, Canada
Naheed Dosani
Lecturer, Division of Palliative Care, Department of Family & Community Medicine, University of Toronto, Toronto, Canada
James Downar
Head and Associate Professor, Division of Palliative Care, Department of Medicine, University of Ottawa; Clinical Research Chair in Palliative and End of Life Care, Faculty of Medicine, University of Ottawa; Staff Physician, Department of Critical Care, The Ottawa Hospital, Ottawa, Ontario, Canada
Michael Downing
Clinical Associate Professor, University of British Columbia, Faculty of Medicine, Vancouver, British Columbia, Canada
Deborah Dudgeon
Professor Amerita, Department of Medicine, Queen’s University, Kingston, Ontario, Canada
Alexandra Farag
Assistant Clinical Professor, Division of Palliative Care, Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada
Marie-Andrée Fournier
Oncology Pharmacist, Department of Pharmacy, Centre Hospitalier de l’Université de Montréal, Montréal, Québec, Canada
Bruno Gagnon
Associate Professor, Department of Family Medicine and Emergency Medicine, Cancer Research Centre, Faculty of Medicine, Laval University, Québec, Canada
Teneille Gofton
Associate Professor, Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada
Crystal Hann
Assistant Professor, McMaster University, Hamilton, Ontario, Canada
Pippa Hawley
Clinical Professor, Head, UBC Division of Palliative Care, Pain and Symptom Management/Palliative Care Medical Leader, BC Cancer, Vancouver, British Columbia, Canada
David Henderson
Assistant Professor, Department of Family Medicine, Dalhousie University, Truro, Nova Scotia, Canada
Leonie M. Herx
Associate Professor and Chair, Division of Palliative Medicine, Queen’s University, Kingston, Ontario, Canada; Medical Director of Palliative Care, Kingston Health Sciences Centre & Clinical Director of Palliative Care, Providence Care Hospital; Past-President, Canadian Society of Palliative Care Physicians, Kingston, Ontario, Canada
Tim Hiebert
Lecturer, Department of Internal Medicine, Rady Faculty of Medicine, Winnipeg, Manitoba, Canada
Cheryl Hurley
Clinical Assistant Professor, Medicine, Discipline of Family Medicine, Memorial University of Newfoundland, St. John’s, Newfoundland, Canada
Danielle Kain
Assistant Professor, Palliative Medicine Physician, Department of Medicine, Queen’s University, Kingston, Ontario, Canada
Bernard J. Lapointe
Kappy and Eric M. Flanders Chair in Palliative Medicine, Associate Professor, Oncology and Family Medicine, McGill University, Montréal, Québec, Canada
Peter G. Lawlor
Professor, Division of Palliative Care, Department of Medicine, University of Ottawa; Clinician Investigator, Bruyère Research Institute (BRI) and Ottawa Hospital Research Institute (OHRI); Palliative Care Physician, Bruyère Continuing Care, Ottawa, Ontario, Canada
Marie-Ève Letellier
Clinician-researcher, Lymphedema Program, McGill University Health Center, Montréal, Québec, Canada
Madeline Li
Associate Professor of Psychiatry, University of Toronto; Scientist, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada
Dave Lysecki
Division Head and Assistant Professor, Division of Palliative Medicine, Department of Pediatrics, McMaster University; Medical Director, Quality of Life & Advanced Care, McMaster Children’s Hospital, Hamilton Health Sciences, Hamilton, Ontario, Canada
Neil MacDonald
Emeritus Professor, McGill University, Montréal, Québec; Emeritus Professor University of Alberta, Edmonton, Alberta, Canada
Susan MacDonald
Associate Professor of Medicine and Family Medicine, Memorial University of Newfoundland, St John’s, Newfoundland, Canada
Vincent Maida
Associate Professor, University of Toronto, Toronto; Medical Director, Hospice Vaughan, Vaughan, Ontario, Canada
Denise Marshall
Physician and Professor, Division of Palliative Care, Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada
Jeff Myers
Associate Professor, Division of Palliative Care, Department of Family & Community Medicine, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
Shalini Nayar
Physician, clinical assistant professor, local department head, Respirology and palliative care, Surrey memorial hospital and BC Cancer Agency, University of British Columbia, Surrey, British Colombia, Canada
José Pereira
Professor and Director, Division of Palliative Care, Department of Family Medicine, McMaster University, Hamilton, Ontario; Scientific Officer, Pallium Canada, Canada
Stefan Riel
Palliative Care Physician, WRHA, Winnipeg, Manitoba, Canada
Gary Rodin
Professor of Psychiatry, University of Toronto, Toronto; Senior Scientist, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada
Rachel Rudney
Max Rady College of Medicine, University of Manitoba, Winnipeg, Manitoba, Canada
Valerie N. Schulz
Founder, Palliative Medicine, Department of Anesthesia & Perioperative Medicine; Professor, Western University, London, Ontario, Canada
Megan Sellick
Assistant Clinical Professor, Division of Palliative Care Medicine, Department of Oncology, University of Alberta, Edmonton, Alberta, Canada
Gilla K. Shapiro
Postdoctoral Fellow, Global Institute of Psychosocial, Palliative and End-of-Life Care (GIPPEC), University of Toronto and Princess Margaret Cancer Centre, Toronto, Ontario, Canada
Kelly Shinkaruk
Assistant Clinical Professor, Department of Anesthesiology, Perioperative, and Pain Medicine, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
Mélanie Simard
Pharmacist, CHU de Québec, Université Laval; Clinical Professor, Faculty of Pharmacy, Université Laval, Québec, Canada
Jessica Simon
Associate Professor, Division of Palliative Medicine, Department of Oncology, University of Calgary, Calgary, Alberta, Canada
Stephen B. Singh
Family Physician and Palliative Care
Physician, Assistant Clinical Professor, Division of Palliative Care, Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada
Michael Slawnych
Clinical Assistant Professor, Libin
Cardiovascular Institute; Clinical Assistant Professor, Department of Oncology, University of Calgary, Calgary, Alberta, Canada
Jonathan Sussman
Professor and Chair Department of Oncology, McMaster University, Hamilton, Ontario, Canada
Anand Swaminath
Associate Professor, Department of Oncology, McMaster University, Hamilton, Ontario, Canada
Yoko Tarumi
Clinical Professor, Division of Palliative Care Medicine, Department of Oncology, University of Alberta, Edmonton, Alberta, Canada
Anna Towers
Associate Professor, Departments of Family Medicine and Oncology, McGill University, Montréal, Québec, Canada
Christina Vadeboncoeur
Associate Professor, Pediatrics, Faculty of Medicine, University of Ottawa; Medical Director, Palliative Care Program, CHEO and Roger Neilson House, Ottawa, Ontario, Canada
Anna Voeuk
Palliative Care Physician, Edmonton Zone Palliative Care Program, Edmonton, Alberta, Canada
Sharon M. Watanabe
Professor, Division of Palliative Care Medicine, Department of Oncology, University of Alberta, Edmonton, Alberta, Canada
Hasitha Welihinda Nephrology/Internal Medicine, Physician, Department of Medicine, Queen’s University, Kingston, Ontario, Canada
Chapter 1
Advance care planning and goals of care discussions
Jeff Myers and Jessica Simon Attitude
To enable each learner to:
◆ Reflect on the need to approach advance care planning (ACP) with an open mind, to explore each person’s values without judgement.
◆ Recognize one’s own biases, including medical culture, that impact how one conducts conversations and makes recommendations about treatment plans.
Skills
To enable each learner to:
◆ Utilize four key elements of ACP: (1) helping patients identify a substitute decision-maker and reflect on their own values and priorities; (2) exploring illness understanding and sharing prognosis tailored to patients’ readiness; (3) eliciting patient values and priorities; and (4) documenting conversations and helping patients communicate their plans.
◆ To integrate knowledge of a patient’s values, and social and medical context to make recommendations around medical decisions.
Knowledge
To enable each learner to:
◆ Recognize which components of ACP are jurisdictional and which might be applied universally.
◆ Describe common barriers and facilitators to ACP and goals of care (GOC) conversations.
◆ Summarize the limits of current evidence about the impacts of ACP at the level of healthcare systems.
Case 1.1
G.S. is a 68-year-old man of South Asian ethnic origin and Sikh faith. He was born in Uganda and moved with his family to Canada in 1972. Trained as a civil engineer, in Canada, he worked in the railways until his retirement 3 years ago. He lives with his wife and 92-year-old mother. He has four adult children, three of whom live locally and one in the United States. He has no previous experience of making medical decisions for others and his father died suddenly from a heart attack aged 73 years. He has a will and documents related
to financial decision-making, naming his oldest son, in the event he loses capacity, but no documents related to medical decision-making. He has type 2 diabetes and hypertension, with mild to moderate end-organ damage, evidenced by chronic renal impairment [glomerular filtration rate (GFR) 55] and pre-proliferative retinopathy.
Question 1. What is advance care planning (ACP) and why would G.S. benefit from starting ACP?
There are two similar international consensus definitions of ACP. One, from predominantly North American perspectives,1 defines ACP as, ‘a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.’ The second, supported by the European Association of Palliative Care,2 provides an extended definition:
‘ACP enables individuals who have decisional capacity to identify their values, to reflect upon the meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and healthcare providers. ACP address’s individuals concerns across the physical, psychological, social, and spiritual domains. It encourages individuals to identify a personal representative and to record and regularly review any preferences, so that their preferences can be taken into account should they at some point be unable to make their own decisions.’
At the heart of both definitions of ACP is an iterative communication process—talking to those close to us and to healthcare providers about our wishes and values, particularly in relation to our health, and revisiting the topic over time. This process prepares people for in-the-moment decision-making,3 either as patients themselves or as representatives or ‘surrogate decisionmakers’ of the patient who has lost capacity. In many jurisdictions, written communication is also legally recognized, where a person can appoint someone who will have the authority to participate in medical/personal decision-making on their behalf, and in some jurisdictions, written instructions or guidance can be left for that decision-maker. ACP has been recognized as an important component of person–family-centred care and preparation for shared decision-making, and a key supportive process in a palliative approach to care.4 ACP balances a ‘transactional’ model of medical care—‘What’s the matter with you?’—and a ‘personal’ model of medical care that asks, ‘What matters to you?’5
Benefits to the person include peace of mind in having their wishes known and a higher likelihood of receiving goal-concordant care. Surrogate decision-makers and family members may benefit from feeling they have honoured the person’s wishes and ACP is associated with less severe stress, depression, and anxiety in bereavement.6 However, systematic reviews have found mixed results,7 and effective ACP interventions and appropriate outcome measures for ACP are still being defined.8
ACP can be considered for all competent adults. G.S. may benefit from ACP specifically because he has chronic illnesses which put him at increased risk of an incapacitating event; he has several family members who may or may not share a common perspective of his values, and he may have values unfamiliar to his healthcare team, potentially putting his family at risk of distress or discord during times when he is ill.
Question 2. How do the outcomes of an ACP conversation with a healthy person differ from one with a person who has a serious illness?
For healthy adults who have not had experience of being in the role of substitute decision maker, ACP can be an unfamiliar and abstract concept. Around 50% of Canadians report having had conversations with a family member or close friend regarding their healthcare treatment preferences in the event of serious illness or injury, but the depth of these conversations is unknown, and many fewer (around 10%) have spoken with a healthcare provider.9 Talking with a healthcare provider can enhance understanding of:
1. The benefits and relevance of ACP to the healthy person and those close to them—for example, in the event of accidents with younger adults and sudden illness, like strokes, with older adults.
2. The characteristics of a suitable surrogate decision-maker—for example, the ability to make decisions under stressful circumstances, to be able to communicate with healthcare providers and be trusted to respect the extent or degree of flexibility the person wants them to exercise in representing their values.
3. The local legal documents and process for ACP.
In contrast, for people living with a serious illness, an ACP conversation also explores illness understanding, information preferences, sharing an individualized prognosis, and anticipating the kinds of decisions a person may face in the future and that may influence their care plan.10 In both contexts, a positive outcome is that the person is activated to continue to talk about their wishes and that they feel heard and understood by those close to them and their clinicians.
Question 3. How might you introduce ACP to G.S. and assess his readiness level?
When introducing ACP, it might help to normalize this as a helpful process that you encourage participation in for all your adult patients.10 Framing ACP as a part of living well may help to reduce patient anxiety.11 This is particularly important as often ACP is confounded with end-of-life care and making decisions about death. Many health regions or countries have ACP resources that you can share with patients (see Box 1.1). Simple healthcare provider actions, like opening the resource (whether online or in print) and highlighting relevant sections, increase the chance that a person will review the material on their own, compared to passive sharing of resources.12
Box 1.1 Examples of national, English-language, online resources
Australia: http://www.advancecareplanning.org.au
Canada: www.advancecareplanning.ca
New Zealand: https://www.hqsc.govt.nz/our-programmes/advance-care-planning/ Singapore: https://www.livingmatters.sg/
United Kingdom: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/ ACP/Planning-for-your-future-care_patient-leaflet.pdf
United States of America: www.theconversationproject.org
Table 1.1 ACP readiness and clinician actions organized by the Stages of Change16,17
Stage What the patient knows or is doing about ACP
Pre-contemplative Patient does not know about or has not considered ACP
Contemplative Patient may be aware of ACP but is not ready to take any action
Healthcare provider action
◆ Introduce ACP and offer educational material
◆ Indicate questions or concerns about ACP can be addressed in future visits
◆ Ask about questions or concerns related to ACP
◆ Offer resources that would assist identifying values or wishes
◆ Talk about the role and importance of the SDM
Sample questions
◆ How much have you heard about advance care planning?
◆ Have you had to make medical decisions before for someone close to you?
◆ How do you and your family approach making medical decisions?
◆ What fears or concerns do you have?
Planning/preparing Patient reviews ACP educational materials or discusses the topic of ACP
◆ Ask about who they are planning to ask to be their SDM
◆ Discuss how to include family and SDM in discussions
Action Patient knows who their SDM is, has begun to discuss wishes, values, and beliefs, and may request help or further clinical information
Maintenance Patient may seek confirmation of their plan and when to review it
◆ Offer to meet with patient and the SDM(s) to facilitate ACP conversation
◆ Offer to review their ACP documentation in relation to their health context
◆ If, at some point, you are unable to speak for yourself, who should speak for you about healthcare decisions?
◆ Does this person know and understand this responsibility?
◆ Do you have a [legal document in use in your jurisdiction]?
◆ Would you like to know more about the potential choices you may be asked to make, and what the benefits and burdens of those choices might be for you?
◆ Periodically review and discuss ACP, particularly with a change in patient’s health status, or critical illness of family member or friend, or if their SDM changes
ACP, advance care planning; SDM, substitute decision-maker.
◆ Would you like to review your plan to see if it reflects your current wishes clearly?
◆ If your health condition or wishes change, it may be important for you to review your plan.
Source: data from Westley C & Briggs L. ‘Using the Stages of Change Model to Improve Communication About Advance Care Planning’. Nursing Forum 2004, 39(3).13
Rizzo v et al. ‘Use of the Stages of Change Transtheoretical Model in End-of-Life Planning Conversations’. Palliative Medicine 2010, 13(3).
There are modifiable and non-modifiable factors that influence engagement in ACP;13 at a personal level, these include age, socio-economic factors, and socio-cultural factors, including inequitable access to the medical or legal system. In addition, engagement in ACP is impacted by healthcare provider factors, such as their skill and comfort discussing ACP, and system challenges impacting available time, prioritization of ACP conversations, and document portability. There are research tools14,15 to quantify ACP readiness and assess a person’s stage in behaviour change, but in the absence of a standard clinical tool, one can explore readiness by inquiring about how G.S. and his family members prefer to plan for medical decisions. Asking what estate and financial planning the person has done, and in G.S.’s case commending him for his financial preparedness and looking after his family by having a will, can lead into explaining how ACP is the equivalent gift for his family in reducing distress around future medical decision-making (see Table 1.1 for examples of framing readiness for ACP by theoretical stages of change and the potential clinician actions at each level). These inquiries can segue the healthcare provider into further exploratory questions, defining ACP and discovering potential challenges for the person (e.g. having no trusted family member or friend to select as a surrogate), and suggestions for ACP activities (e.g. talking together with loved ones at a family meal, using an online guide, or attending a group workshop).
Case 1.1 (continued)
At age 76, G.S. has an ST elevation myocardial infarction and he is admitted to a coronary care unit. Postangiography, he is in delirium with severe hypotension and acute kidney injury. His wife and children take turns being at his bedside 24 hours each day. His medical team wants to know about previous ACP conversations he has had and who they should talk to about medical decision-making regarding the potential use of intensive care, cardiopulmonary resuscitation, and intubation. At some point in the past, G.S. wrote down some of his wishes by stating, ‘I do not want heroic or life support measures if I have an illness that is likely to leave me unable to recognize my family or be able to live at home with them.’ His son is the named ‘substitute decision-maker’, but each family member has strong and differing opinions about what G.S. would and would not want in the face of this serious illness and the uncertainty about his functional recovery. His son is struggling to guide the healthcare team about his father’s wishes.
Question 4. Will the ACP information help G.S.’s son with decision-making?
To address this question, we must first look at how medical decisions are made. There is a vast body of literature addressing the complex process of medical decision-making and for our purposes, the focus will be on basic information sources.18
There is widespread agreement that a decision about a treatment for a specific illness requires a patient to understand information about both their illness and its treatments. It can be problematic, however, if clinicians solely focus on these elements. When making medical decisions, illness and treatment-related information broadly comprise only one of two critically important sources of information (see Figure 1.1).
The second information source, one that is equally as important, is from the patient.20 This information is values-based (i.e. what a person finds important in life and why this is important). When decision-making, solely focusing on information that addresses illness and its treatments risks taking the person out of the equation.
Values & Goals
Evidence & Experience
- of the person - about disease - about treatments
- what’s important - why it’s important
Decisions
Both sources of information are needed for effective decision-making
Fig. 1.1 Broad information sources critical for medical decision-making.19
Adapted courtesy of Dr. Nadia Incardona. Michael garron Hospital, Toronto, Canada. Data originally from Fulford KWM, Peile E, Carroll H. ‘Essential values-based practice: Clinical stories linking science with people’. New York: Cambridge University Press 2012.
When facing decisions, substitute decision-makers need to draw from previous ACP conversations for guidance. When first developed, the tasks of ACP comprised primarily completing an advance directive or living will that outlined the treatments a person would or would not want in the future.3 This approach was found to be largely ineffective, however.21,22 What was learnt from patients and decision-makers was that when it comes time to make complex decisions, information about specific treatment preferences can be difficult to interpret and apply.23,24,
An example is found with the first part of G.S.’s ACP information, ‘I do not want heroic or life support measures’. In the past, this was commonly used as a standalone statement in ACP conversations but is difficult to interpret in the absence of further clinical context. An important reason for this is that patients do not value specific treatments themselves; they value the outcome of treatments.23 Specific treatment preferences then may not be helpful information for substitute decision-makers.
Information that is likely to help substitute decision-makers could apply to a range of clinical contexts and includes the underlying reasons a patient has for a specific treatment preference (e.g. why a person does not want heroic or life support measures). As well, helpful ACP conversations include a patient’s description of life circumstances considered to be acceptable and unacceptable, or tolerable and intolerable.
The resulting focus for ACP has shifted over the last several years, away from eliciting preferences for treatments and towards an emphasis on a person’s values.21,25,22 As to whether or not the ACP information outlined by G.S. will help his son with decision-making, it is likely to be partially helpful but will require the skilful facilitation of a GOC discussion.
Question 5. What are goals of care (GOC) discussions?
A proposed literature-derived definition for the phrase ‘goals of care’ is, ‘ . . . the overarching aims of medical care for a patient that are informed by patients’ underlying values and priorities, established within the existing clinical context, and used to guide decisions about the use of or limitation(s) on specific medical interventions.’26 A person-centred approach involves setting out to understand who the person is, how they view their own clinical picture, and how their values and goals align with both the clinical picture and treatment approaches being considered.
Considerable focus is on assessing illness understanding, meeting information needs, and determining how the person defines and describes the goals they have for their care (i.e. being able to do or experience something).27 From this point, the clinician and patient/decision-maker can determine the treatment and care that best fit with the person’s goals. Approached in this way, the GOC discussion may illuminate misinformation and misunderstandings, as well as goals that are incongruent, or even incompatible, with the clinical picture. Additional time and multiple interactions may be necessary to adequately meet information needs and address the broad range of emotional responses that can occur.28
A component of the GOC discussion that is important to highlight is illness understanding. A patient can contemplate their values, as well as identify and prioritize their goals for their care, only once they understand individualized illness-related information relevant to their current context.29 Currently, many patients with serious illness do not fully appreciate or understand their illness as being incurable and progressive.30,31 This means a very high likelihood that a patient’s/decisionmaker’s treatment and care decisions may not have been adequately informed. Examples of contributing factors to this include adequate information not being provided, information not being understood by patient/decision-maker, personal coping mechanisms that defer contemplating illness severity, and cultural barriers averting a person from conceiving of the illness trajectory.
Studies addressing information needs related to illness understanding have consistently reported that patients desire detailed information, certain types of information (e.g. quantitative or qualitative), and information that is both optimistic or hopeful and realistic or practical.32,33, Information needs vary greatly between patients and over time, which highlights the importance of iteratively readdressing. To effectively meet a person’s information needs, the content and function of the information, as well as the best method of providing the information, are determined through a process of assessing what the patient knows, what he or she believes they need to know, and how the information might facilitate goal identification and decision-making.34
Another important component of the GOC discussion and a key element of meeting information needs is prognosis. This includes a description of the disease course and the possible impact of both the disease and the treatments being considered. Prognosis is often characterized as concrete information to be disclosed or considered synonymous with a survival estimate. ‘How much time a person has left’ is only one component of what prognosis broadly encompasses.35 The main problem with a survival estimate is the high likelihood of inaccuracy and the risk this carries as far as how this information could be used by patients and families. If asked for a survival estimate, exploring the underlying reasons for the question, rather than simply providing a specific time frame, may lead to a far more effective interaction.
A general clinical and stepwise approach to the GOC discussion is outlined in Figure 1.2. Given the context for a GOC discussion is needing to make a treatment or care decision, the clinician’s
Fig. 1.2 Model for facilitating a goals of Care Discussion.36
Reproduced with permission from Steinberg L, Soong C, Safavi N, Daly A. ‘Improving your goals of care conversation’. Sinai Health System. 2019. Available at: http://www.goalsofcaremodule.com (Accessed Sept 29, 2019) (34).
aim should be to arrive at a recommendation that aligns with the patient’s goals. The final step ‘make a plan’ is intentionally broad to encompass a wide range of possible plans. Examples of plans include a proposed treatment being recommended and a subsequent plan for informed consent or the plan of pausing the discussion to allow information to be digested.
Question 6. How can a focus on treatments be problematic and how can we support G.S.’s son and his family in medical decision-making at this time?
To review G.S.’s current status, family members have strong and differing opinions on what he would and would not want, which has left his appointed decision-maker, his son, uncertain with how to guide his father’s care team. This is an example of the problems that can arise when ACP conversations primarily focus on treatments. We have outlined above other potential challenges with a treatment focus during ACP conversations and for the GOC discussion. Box 1.2 outlines the risks of using a treatment-centred approach.
G.S. has previously stated if he has an illness that is likely to leave him unable to either recognize his family or live at home, he would not want heroic or life support measures pursued. The most helpful information here is that he highly values both being able to recognize his family and being able to live at home. It can be inferred that G.S. would consider not being able to do these two things as unacceptable or intolerable. Examples of strategies that could be used to address the current decision-making challenges would then include:
◆ Instead of providing detailed information about treatments, focus discussions on who G.S. is, what he values, and what is important to him.
◆ To address differing opinions on what G.S. would want or not want, turn the question around by asking family members what they most hope for and most fear.
◆ When providing information and when engaging in decision-making processes, frame information using G.S.’s wishes (i.e. the likelihood he will be able to both recognize his family and live at home).
To describe a specific approach to decision-making that could be used with G.S.’s substitute decision-maker, consider the following scenario . what would you do?
Box 1.2 Risks of a treatment-centred approach to GOC discussions
◆ Greater likelihood medical jargon will be used and require patients to think of life in narrow, potentially unfamiliar medical parameters [e.g. cardiopulmonary resuscitation (CPR), bilevel positive airway pressure (BiPAP), transfusions, etc.]37
◆ Erroneously assuming patients have adequately informed preferences for treatments38
◆ Interpreting treatment decisions documented as reflecting more than the specific decision (e.g. no CPR being equated with ‘no interventions’)39
◆ Inadequately recognizing the pressures on family members, who may be processing medical information, their sense of duty to protect their loved one, and their emotions of worries, fears, sadness, and hopes40,41,41
You have been diagnosed with a life-threatening illness and medication A is the only treatment that slows progression of the illness. For most people, however, medication A also causes at least a 25% loss in cognitive function
Would you take medication A?
Clinicians in the role of the patient for this scenario will value cognition and longevity in highly individualized ways. A decision about medication A likely begins with consideration of what life with 25% less cognitive function would look like. This might include reflecting on questions like ‘Could I work?’, ‘Could I still enjoy time with family and friends?’, or ‘How much of a burden would this be for others?’. The resulting image would then be compared with a life that is considered acceptable or tolerable. For some, a loss of cognition is an acceptable trade-off for greater longevity, and for others, the illness consequences are more acceptable than the risk of losing cognition. Regardless, a decision is made by applying what is considered acceptable or tolerable (i.e. what is valued and considered important). When a patient who is not a clinician is presented with this same scenario, most are likely able to describe an image of life considered acceptable or tolerable. It is unlikely, however, that a patient will be able to generate a realistic image of what life with 25% less cognitive function would look like. For G.S. then, he has described the conditions he considers intolerable and decisions are ideally framed around the potential impact on his abilities to recognize family and live at home.
To summarize this section, qualitative evidence from patients with serious illness outlines their view that the potential outcomes of treatments are more likely to matter than the treatments themselves. When discussing treatment options for specific diseases, to the extent possible, clinicians should spend time describing an image of what life may look like. This image can then be compared with what is considered acceptable or tolerable by the patient/ decision-maker.
Case 1.1 (continued)
G.S. recovers to be discharged from hospital, but with a reduced left ventricular ejection fraction, chronic heart failure, and a GFR of 15. He is able to go home, but because he needs one person to assist with transfers and has a raised risk of falls with persistent hypotension, he requires 24-hour care and supervision. His prognosis appears to be many months or short years, with the potential for increasing frailty and recurrent episodes of acutely symptomatic heart failure. Although his delirium has cleared, he has associated cognitive changes such that he is slower to respond to questions. Cognitive testing finds reduced short-term memory and mild reductions in executive functioning. Overall, however, he has regained decision-making capacity, which comes as a relief to his son who struggled with decision-making throughout his father’s hospital admission.
Question 7. How could you support G.S.’s ongoing ACP and expression of his priorities and goals for his care?
There are several ways to longitudinally support person-centred decision-making for G.S. and include awareness that life priorities will iteratively evolve, preparing G.S.’s son and entire family for future decision-making and documentation of ACP and GOC discussions over time.
As long as a patient has the capacity and readiness to participate, ACP conversations should occur iteratively and ideally revisited several times throughout the course of serious illness.
