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Advance Care Planning: What's All the Talk About?
Advance Care Planning: What’s All the Talk About? Sue Grant, RN, Dipl.T., Project Leader, Advance Care Planning Initiative, Fraser Health, Surrey, BC Doris Barwich, MD, CCFP, Medical Leader, Hospice Palliative / End-of-Life Care Services, Fraser Health, Surrey, BC Joan L. Rush, B. Comm., LL.B., LL.M., Barrister & Solicitor, Governance & Health Law,Vancouver, BC Carolyn Tayler, RN, BN, MSA, CON(C), Director, Hospice Palliative and End of Life Care, Fraser Health, Surrey, BC
ABSTRACT
RÉSUMÉ
T
L
he ethics of honouring an individual’s wishes for health care are clear and unequivocal in health care literature and policy. Yet health care providers are often unsure how to proceed, both in initiating an advance care planning conversation and in respecting an advance directive once a person is no longer capable of communicating. While advance directives are supported under the Canadian common law, provincial legislation differs across the country, and can create barriers to effective advance care planning.
The purpose of this article is to describe an advance care planning project undertaken by a large Canadian health authority that shifted the focus away from the document and onto the conversation. Fraser Health’s “Let’s Talk” initiative promotes the importance of advance care planning conversations while adults are healthy and capable and supports health care professionals in facilitating these conversations. This article will also address the system barriers and broad implementation challenges faced in the context of the Canadian health care and legal environment.
INTRODUCTION John is a husband and father in his early 50s who has been recently diagnosed with terminal cancer. He is overwhelmed and not sure about next steps. Ruby is an 80-year old widow with diabetes and heart disease who has been recently diagnosed with lung cancer after nursing her husband until he died from Alzheimer’s disease 2 years ago. She was not happy with the manner in which he died and is determined that her course will be different. She wants to make her own choices and communicate them effectively while she is still able. Kate is a provincial tennis champion in her late 30s who has been recently diagnosed with rapidly progressive amyotrophic lateral sclerosis (ALS). Although she is very clear about her health care choices, her family is deeply divided about the kind of care she should be receiving. Every day, in health care settings across the country, patients with various advanced medical illnesses are making decisions about the kind of health care they do and do not want. Their decisions are
’éthique du respect des souhaits individuels en matière de soins de santé est clair et sans équivoque dans la documentation scientifique et les politiques de soins de santé. Pourtant, les professionnels de la santé sont souvent incertains de la façon de procéder, tant au moment d’amorcer une conversation sur la planification des soins qu’au moment de respecter une directive préalable lorsque la personne n’est plus en mesure de communiquer. Bien que les directives préalables soient reconnues en common law au Canada, les lois provinciales diffèrent à l’échelle du pays et peuvent créer des obstacles à une planification préalable efficace des soins. Cet article vise à décrire un projet de planification préalable des soins entrepris par une institution de santé au Canada, qui déplace la question du document à la conversation. L’initiative Let’s Talk de Fraser Health met l’accent sur l’importance des conversations sur la planification préalable des soins pendant que les adultes sont en santé et capables de prendre des décisions et appuie les professionnels de la santé dans l’amorce de ces conversations. L’article aborde également les barrières systémiques et les grands défis de mise en œuvre dans le contexte des soins de santé et de l’environnement juridique au Canada.
informed by their own life experience and past experience with the health care system, personal and cultural preferences, and information obtained from health care providers and the Internet. While each situation is unique, there are common difficulties for individuals and families facing choices in the context of terminal illness. Many are unclear about their options and unsure about where they can go for advice. Others are clear about the kind of care they want but do not have the support to ensure that their choices are translated into effective plans. Others run into conflicts that are difficult to resolve as these issues often touch on deeply held family values and beliefs. Advance care planning conversations (planning in advance for future health care) provide a way for capable adults to communicate with their families and health care providers in a structured way regarding their wishes about end-of-life care. This has been shown to improve satisfaction with health care and to be something that patients want to do.1 However, advance care planning conversations are often not initiated by health care professionals, nor are advance directives (written or verbal expressions of a person’s advance care plan) routinely honoured when patients become incapable of communicating their decisions.
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Many of our current systems of care do not routinely provide opportunities for patients and families to be adequately informed about their health care choices; to be able to discuss and reflect on their options; and then to have support to create written plans that are incorporated into the plan of care by all health care providers in all settings. In 2004, Fraser Health (FH), a large health authority in British Columbia, Canada, recognized the need to address the advance care planning needs of their patients and families and embarked on an advance care planning initiative called “Let’s Talk”.2 This title was chosen to reflect the fact that dialogue about health care choices needs to be inclusive of all parties: patients, loved ones and health care professionals. This article will discuss the main areas of controversy and confusion around advance care planning in the Canadian context and describe the systems approach FH took to address these issues.
LITERATURE REVIEW Advance care planning has been supported in law in the United States since 1993. However in a pivotal article, Advance Care Planning: Pitfalls, Progress, Promise, Dr. J. Prendergast discussed the problems with advance directives in the United States, and highlighted the Respecting Choices® program in LaCrosse, Wisconsin as one that had demonstrated success. Dr. Prendergast concluded that "[The La Crosse approach]…fundamentally changed the standard medical approach to advance care planning"3 by “developing a system so certain routines and practices would become the standard of care”4. These systems included an emphasis on facilitated conversations by trained staff with patients and substitute decision makers that promoted shared understanding and time for reflection and discussion. Once clarity had been reached, decisions were translated into written plans and became a permanent part of the medical record. Discussions were updated as necessary to ensure that patient choice was respected. Failure to follow these plans led to further discussions about how to improve the systems of care so that these “errors” would not occur again. Important outcomes included improved satisfaction with care and less conflict and burden on families.5 As well, health care providers experienced less moral distress and a greater comfort in knowing that, no matter whether the choices were for more care or less care, treatment was consistent with patient choices. Respecting Choices® also demonstrated that trained facilitators, supported by medical colleagues, were able to significantly help patients and families come to agreement about health care choices and that all health care providers have a role in initiating these conversations and documenting them. This groundbreaking work has now been adopted in multiple sites across the United States and also throughout Australia based on initial work begun by Austin Health in Melbourne, Australia (Respecting Patient Choices6). Austin Health identified this approach to end-of-life planning as a significant cultural change: “Results from both the original Respecting Choices® program in Wisconsin, USA, and the initial program at Austin Health, have confirmed that the Program is highly successful in ensuring that patients’ future treatment wishes are known and respected in end-of-life care.” 7
6
In Canada, work by Peter Singer at the University of Toronto supported the perspective of the Respecting Choices® program. Interviews with 48 hemodialysis patients led Singer et al to conclude “that (1) the purpose of ACP is not only preparing for incapacity but also preparing for death; (2) ACP is not based solely on autonomy and the exercise of control, but also on personal relationships and relieving burdens placed on others; (3) the focus of ACP is not only on completing written advance directive forms but also on the social process; and (4) ACP does not occur solely within the context of the physician-patient relationship but also within relationships with close loved ones.” 8 Although the literature identifies challenges and controversies with advance care planning and the creation of advance directives, one of the most difficult areas for most health care professionals is when there is lack of agreement or conflict among family members about health care decisions. Research with cancer, advanced renal and cardiac patients have shown that having these conversations ahead of time, rather than at a time of crisis, led to improved satisfaction with care and less conflict and burden on families.9 Although the Codes of Ethics of both the Canadian Medical Association (CMA) and the Canadian Nurses Association (CNA) strongly support the importance of advance care planning, there has been misunderstanding about whether these choices can be respected once a patient is no longer able to communicate them and whether decision-making then defers to the patient’s next of kin or identified substitute. The importance of following the advance directive of a patient made when the patient was capable is addressed in the following documents, drafted by Canadian health care organizations: 1.
The Joint Statement on Advance Directives (CNA, Canadian Healthcare Association, Canadian Homecare Association, Canadian Public Health Association, Home Support Canada, Canadian Long-Term Care Association and developed in collaboration with the Canadian Bar Association, 1994)10
2.
The Joint Statement on Resuscitative Interventions (CNA, CMA, Canadian Healthcare Association, Catholic Health Association of Canada, and developed in collaboration with the Canadian Bar Association, 1995)11
More recently, Health Canada gave credence to the significance of advance care planning in a survey of advance care planning in Canada. The Glossary Project 12 was completed by Janet Dunbrack for Health Canada and presents an overview of the wide array of attitudes, policies, and challenges regarding advance care planning and concludes that “there is a need to foster ongoing dialogue about advance care planning among the legal sector (including those who develop legislation), policy makers, health care providers and consumers so that legislation, law and policy can be both legally and medically sound and socially responsive”13. Let’s Talk: An Example of a Systems Approach Supported by the literature, a review of best practice, and feedback from the public that people wanted to have these conversations, Fraser Health (FH) began to address the end-of-life care planning needs of its patients through the “Let’s Talk” initiative.
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As a beginning step in the project, a pilot study was done with a specific patient population. Four health care professionals became certified Respecting Choices© instructors and ran a pilot project14 with 35 dialysis patients. The results of the pilot highlighted patients’ desire to have advanced care planning (ACP) conversations and their willingness to have health care providers initiate the conversation. Patients participating in the pilot expressed “gratitude” and “relief ” after going through the ACP process. The pilot demonstrated the unique challenges faced by patients in identifying a substitute decision-maker and the subsequent challenges of substitute decision-makers. The topics covered in the pilot conversations were broad and not always specifically connected to wishes for future health care. Patients and health care providers alike wanted assurance that their advance care plan would be honoured under the law and supported by the health care system. The pilot was the first step in promoting and exploring the “Let’s Talk” message.
The FH Renal Pilot and subsequent advance care planning conversations over the past 3 years concur with studies showing that patients feel more empowered and more hopeful when they are able to engage in advance care planning.15 FH identified several issues that would need to be addressed in order to support ACP in the region and set out to improve the attitude, skills, and knowledge of both health care professionals and the general public in the area of ACP. Table 1 identifies the key issues and barriers identified and how they have been addressed in the “Let’s Talk” initiative. The major issues were education of health care professionals, engagement with the public, culture and language issues and system barriers.
Table 1. Issues / Barriers and Actions Experienced in Implementing Advance Care Planning, and How they were Addresed Issue/Barrier
Action
Health care providers needed education on the importance of supporting and honouring advance care plans.
• • •
Health care providers needed tools to assist them in supporting advance care planning.
•
•
•
Health care providers are often reluctant to initiate the conversation because of their own past experiences.
•
Members of the public require information regarding advance care planning.
• • •
•
•
Educational program was developed based on the foundational work of the Respecting Choices® program. An on-line (intranet), interactive ACP education module was developed and is available to FH staff. To date, over 600 health care providers have received formal ACP education.
The My Voice Workbook© was developed to assist health care providers and the public in initiating and recording advance care planning conversations. Information pamphlets supporting ACP were developed. (Making Informed Decisions about CPR, Information Booklet for Advance Care Planning). An advance care planning e-book has been developed: Planning in Advance for Your Future Healthcare Choices©17
Education sessions include opportunities to discuss personal experiences with end-of-life. The ACP curriculum includes skills-based practice exercises in classroom sessions.
Creation of a comprehensive advance care planning website. Toll free information number for advance care planning. Advance care planning education sessions for support and service groups (i.e., Rotary, MS Society) Creation of a wallet card allowing individuals to indicate that they have had ACP conversations.
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Table 1. Continued... Action
Issue/Barrier
The need to address both cultural and language concerns re: advance care planning.
• • •
Provincial legislation re: advance directives is confusing, leading health care providers to avoid the topic.
•
Health care systems (health records, physicians’ office records) are currently not adequate to ensure that advance care planning is initiated and that wishes are honoured.
•
Need for more engagement with physician leaders
•
•
•
FH consulted (and continues to consult) with members of several communities (i.e., Chinese, Punjabi, Iranian) Punjabi translation of the My Voice Workbook©. ACP posters in 7 languages.
FH has worked closely with legal counsel on advance directives to ensure accurate information is conveyed. The legal aspects of advance directives in B.C. are taught in the formal education sessions for health care providers and the public.
Greensleeves (green page protectors) have been instituted in all acute care sites to ensure ready access to advance care planning documents at the front of each health record. FH is currently working with several physician offices to develop practical tools for recording and tracking advance care planning conversations with patients.
A focus group was held to obtain physician input on key strategic directions re: ACP.
Development and implementation of the “Let’s Talk” program has been characterized throughout by extensive consultation and collaboration to ensure applicability throughout the continuum of care. The program is innovative in the breadth of its interdisciplinary development and its attention to the cultural, emotional, spiritual and physical needs of the diverse communities within FH. It has effectively shifted advance care planning’s focus from the medical model of care to a personal, relational model and has highlighted the need for strong system support for ACP. The Legal Perspective Strong system support implies a clear understanding of the legal aspects of advance directives. Fraser Health (FH) worked with external counsel to research the law on advance directives in Canada, and particularly in British Columbia (B.C.). We learned that Canadian common law, or case law made by judges, is consistent with the ethics of advance care planning. The cases confirm that our health care providers are legally, as well as ethically, required to learn and follow the wishes of our patients and other public constituents. The FH program is based on this legal and ethical foundation. We teach our health care providers the law on advance care planning as a part of our workshop presentation, and afford them opportunities to ask questions about the legal aspects of advance directives.
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The state of the law has been an obstacle to effective planning in the past. Provincial legislation on advance care planning is quite recent in Canada, having emerged only over the last few decades, and there is a great deal of inconsistency in the legislation enacted in different provinces. Some provinces, including B.C., do not provide for instructional advance directives in the legislation and only reference proxy directives for substitute decision-making. The B.C. legislation is particularly problematic because it requires a person to consult with a lawyer who must witness the directive, known as a Representation Agreement, before it becomes effective. This expensive and onerous formality makes it difficult for many of our constituents to make a Representation Agreement, particularly if they suffer health issues that affect their mobility. In light of this legislation, we were initially uncertain of the ability to engage in effective planning with members of our community. We were relieved to know that the common law, which has effect across Canada, confirms our legal obligation to follow our patients’ wishes if they are known. However, there is both public and political awareness that B.C. needs new advance directive legislation. The B.C. Legislature proposed instructional advance directive legislation, which would remove obstacles to planning and provide people choice over the type of advance care plan they would like to make in 2006, and again in
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spring 2007. Although the legislation was not passed because of a heavy schedule that pushed it off the legislative agenda, we anticipate that the legislation will be considered again in the near future. The proposed legislation would make B.C. advance care planning law substantially similar to the modern legislation in a number of other provinces including, for example, in all the prairie provinces. We expect that advance directive legislation across Canada will continue to evolve and harmonize to ensure that it is consistent with medical ethics. The Essence of Advance Care Planning As health care providers have acknowledged the ethical and legal imperatives of advance care planning, interest in “Let’s Talk” has grown. The FH program received particular national and international attention at the May 2007 Inaugural Canadian Advance Care Planning Symposium held in Calgary, Alberta, Canada. But clearly, the most significant marker of the success of the “Let’s Talk” initiative is the impact of advance care planning in the lives of individuals. The following personal stories illustrate the value of advance care planning and serve as inspiration to continue working in the advance care planning arena: John’s Story John was a husband and father in his early 50s when he was diagnosed with terminal cancer. The month following his diagnosis was devastating for John, his wife, and adult children. When John’s sister-in-law shared FH’s ACP materials with the family, a previously locked door was opened. John began having conversations with all the family and with his doctor. Prompted by the My Voice Workbook©16, John was able to identify several goals for what remained of his life. Among other things, he wanted a birthday party and he wanted to finish restoring the antique car he kept in his garage. The birthday party was quickly arranged by John’s family. The car restoration was supervised from John’s hospital bed. Because of the open conversations John and his wife Helen were able to have, Helen was able to make a difficult decision to take a leave of absence from her job during the last months of John’s life. Today, she still credits the ACP conversations with giving her the gift to grieve with her husband throughout the dying process. Helen is clear that without the My Voice Workbook© and supporting materials, the conversations would not have happened and she would not have been sure about what her husband really wanted. Ruby’s Story Ruby is 80 years old and was recently diagnosed with lung cancer. Just 2 years ago her husband died from Alzheimer’s disease. Ruby was asked to make many decisions on her husband’s behalf after he became incapable of decision-making. She was often unsure of what he would have wanted. Ruby decided to make an advance care plan for herself, in order to make her doctors, family members, and close friends aware of her choices for future health care. After reflecting on her wishes for future health care and deciding what would be important to her should she become incapable of communicating her wishes, Ruby made a written advance care plan and discussed her wishes with her doctor, family members, and close friends. Ruby expressed a sense of relief at the completion of her advance care plan.
Kate’s Story Kate is an athletic 37 year old teacher who has been recently diagnosed with rapidly progressive ALS. Since discovering her diagnosis and prognosis she has learned much about the trajectory of ALS and is clear about what treatment options she would want. Kate’s family members differ amongst themselves regarding the type of treatment they would choose for Kate when she becomes incapable of speaking for herself. With the support of her doctor, Kate arranged for a meeting with her family members. She told them about her wishes and gave them all a copy of her written advance care plan. Although some of her family members do not share Kate’s perspective on treatment options, they have all assured her that they will honour her wishes when she is no longer able to choose for herself. Every day, in health care settings across the country, patients are talking about what they would want or not want done should they become incapable of making their own health care decisions. The “Let’s Talk” initiative provides support to these individuals to begin to reflect on what gives their lives meaning, make decisions for themselves, and discuss their choices with health care providers, family members, and friends. While there will continue to be ethical, legal, and medical issues to address, the “Let’s Talk” initiative has laid a strong foundation for advance care planning, not only in the Fraser Health Authority, but across Canada.
CONCLUSION Advance care planning must be grounded in a personal relational model if it is to be adopted by the general public. The health care system’s ability to provide an infrastructure to support such a relational model of advance care planning is critical to ensure that individuals have their health care choices honoured. Barriers to building a strong advance care planning system include lack of knowledge on the part of health care providers and the public, confusion regarding the law as it applies to advance directives, and limited financial resources to provide education and infrastructure. The challenge remains for health care providers to become informed about and champion the advance care planning process regardless of the clinical setting.
ADDENDUM “On October 22, 2007, Bill 29, a section of which entitles capable adults to give instructional advance directives to health care providers, received 3rd reading in the British Columbia Legislature. When the new legislation comes into force, an advance directive that has been signed by a capable adult and witnessed in accordance with the legislative requirements will be legally binding on health care providers in the province.”18
ABOUT THE AUTHORS Sue Grant has been the Project Leader for Fraser Health’s Advance Care Planning initiative since 2003. Her 25 years in health care management include a wide range of specialties, from critical care nursing to home care nursing, palliative care, paediatrics, and residential care. Her work in the field of advance care planning has set benchmarks for best practice and has helped to shift advance care planning from a medical to a relational model.
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Joan Rush is a lawyer consulting in the areas of health law, corporate governance, insurance law, and legal issues relevant to health care providers and the financial services industry. Prior to establishing her consulting practice, Joan was Vice President and General Counsel of a Canadian life insurance company. Joan is a member of the Board of Directors for Community Living B.C., a Crown Agency, and is a member of the B.C. Cancer Agency Research Ethics Board and its Ethics Advisory Committee. She is a former adjunct Professor at the Faculty of Law, University of British Columbia. Joan completed her LL.M. thesis in the area of health law and ethics in 2005 and received her Master of Laws degree from UBC in 2006. Dr. Doris Barwich has been the Medical Leader for Hospice Palliative / End-of-Life Care Services in Fraser Health Authority since 2001. She also works as a Palliative Care Consultant at the BCCA Fraser Valley Cancer Centre. She is also the Chair of the BC Learning Centre for Palliative Care and of the BC / Yukon Education Working group under the Quality End of Life / Palliative Care Action Group, Canadian Strategy for Cancer Control. Carolyn Tayler is presently the Director, Hospice Palliative and End of Life Care for Fraser Health. She has worked in a variety of settings with cancer and palliative patients over the last 35 years. She is a Past President of the Canadian Association of Nurses in Oncology and is currently the Past President of the BC Hospice Palliative Care Association and was Chair of a Pallium Initiative to develop western Canadian palliative care telenursing protocols. She is a member of the End-of-Life Standing Committee in British Columbia and Co-Chair of the Canadian Strategy for Cancer Control B.C. / Yukon Quality End of Life and Palliative Care Action Group.
REFERENCES 1.
2.
Fraser Health Authority [homepage on the Internet]. Surrey (BC): The Authority; 2007 [cited 2007 Oct 18]. Fraser Health Advance Care Planning. Available from: http://www.fraserhealth.ca/HealthInfo/AdvanceCarePlanning/Default.htm
3.
Prendergast TJ. Advance care planning: pitfalls, progress, promise. Crit Care Med. 2001;Feb 29(2): Suppl N34-39.
4.
Hammes BJ. Update on Respecting Choices four years on. Innovations in End-of-Life Care. 2003 Jan-Feb;5(2):1-18 [cited 2007 Oct 18]. Available from: http://www2.edc.org/lastacts/ archives/archivesMarch03/respecting.asp
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Tierney WM, Dexter PR, Gramelspacher GP, Perkins AJ, Zhou X-H, Wolinsky FD. The effect of discussions about advance directives on patients’ satisfaction with primary care. J Intern Med. 2001;Jan16(1):32-40.
Briggs L. Shifting the focus of advance care planning: using an indepth interview to build and strengthen relationships. J Palliat Med. 2004;Feb 7(2):341-49.
6.
Respectingpatientchoices.org.au [homepage on the Internet]. Melbourne: Austin Health, 2007 [cited 2007 Oct18]. Available from: http://www.respectingpatientchoices.org.au/
7.
Respecting Choices® [homepage on the Internet]. LaCrosse (Wisc): Gunderson Lutheran Medical Center, 2007 [cited 2007 Oct 18]. Available from: http://www.gundluth.org/eolprograms
8.
Singer PA, Martin DK, Lavery JV, Thiel EC, Kelner M, Mendelssohn DC. Reconceptualizing advance care planning from the patient’s perspective. Arch Intern Med. 1998;Apr 158(8):879-84.
9.
Kass-Bartelmes BL. Hughes R. Advance care planning preferences for care at the end of life. Research in Action. 2003;Mar 12:1-19 [cited 2007 Oct 18]. Available from: http://www.ahcpr.gov/ research/endliferia/endria.pdf
10. Canadian Nurses Association, Joint Statement on Advance Directives. Ottawa: Canadian Nurses Association, 1994 [cited 2007 Oct 18]. Available from:http://www.cna-aiic.ca/CNA/ documents/pdf/publications/PS20_Advance_Directives_Sept_ 1994_e.pdf 11. Williams JR. Consensus finally achieved on resuscitative interventions. CMAJ. 1995;Nov:153;11:1641-2 [ cited 2007, Oct 18]. Available from: http://www.cmaj.ca/cgi/content/abstract/153/11/ 1641?ck=nck 12. Dunbrack J. Advance care planning: the glossary project. Ottawa: Health Canada, 2006 [cited 2007 Oct 18]. Available from: http://www.hc-sc.gc.ca/hcs-sss/pubs/palliat/2006-proj-glos/ index_e.html 13. Dunbrack J. Advance care planning: the glossary project: final report. Ottawa: Health Canada, 2006 [cited 2006 Oct 18]. p 5. Available from: http://www.hc-sc.gc.ca/hcs-sss/pubs/palliat/ 2006-proj-glos/index_e.html 14. Grant S. Fraser Health ACP Renal Pilot. Surrey (BC): Fraser Health Authority. 2004. 15. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ. 2006;Oct 28;333:886 16. Grant S. My voice workbook©. Surrey (BC): Fraser Health Authority, 2007 [cited 2007 Oct 18]. Available from: http://www.fraserhealth.ca/NR/rdonlyres/e7yv47i3fd23yrb67m 77o7oqqht5v6e66b67i25cg5rkvaktsrv2p5gsiqeuliog3ovqhe4ywl yhmm/MyVoiceWorkbook.pdf 17. Grant S. Planning in advance for your future health care choices©. Surrey (BC): Fraser Health Authority, 2007 [cited 2007 Oct 18]. Available from: http://www.fraserhealth.ca/NR/rdonlyres/ e5kcl7u4ba4adyl24nywo24kzfake275yuczaaejhpbqjospbc6psbm 6jpmtut3rrbxznc7pg23n3i/ACPebook.pdf 18. B.C., Bill 29, Adult Guardianship and Planning Statutes Amendment Act, 2007, 3rd Sess., 38th Parl., (3rd reading 22 October, 2007).
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ABSTRACT
RÉSUMÉ
T
L
he ethics of honouring an individual’s wishes for health care are clear and unequivocal in health care literature and policy. Yet health care providers are often unsure how to proceed, both in initiating an advance care planning conversation and in respecting an advance directive once a person is no longer capable of communicating. While advance directives are supported under the Canadian common law, provincial legislation differs across the country, and can create barriers to effective advance care planning.
The purpose of this article is to describe an advance care planning project undertaken by a large Canadian health authority that shifted the focus away from the document and onto the conversation. Fraser Health’s “Let’s Talk” initiative promotes the importance of advance care planning conversations while adults are healthy and capable and supports health care professionals in facilitating these conversations. This article will also address the system barriers and broad implementation challenges faced in the context of the Canadian health care and legal environment.
INTRODUCTION John is a husband and father in his early 50s who has been recently diagnosed with terminal cancer. He is overwhelmed and not sure about next steps. Ruby is an 80-year old widow with diabetes and heart disease who has been recently diagnosed with lung cancer after nursing her husband until he died from Alzheimer’s disease 2 years ago. She was not happy with the manner in which he died and is determined that her course will be different. She wants to make her own choices and communicate them effectively while she is still able. Kate is a provincial tennis champion in her late 30s who has been recently diagnosed with rapidly progressive amyotrophic lateral sclerosis (ALS). Although she is very clear about her health care choices, her family is deeply divided about the kind of care she should be receiving. Every day, in health care settings across the country, patients with various advanced medical illnesses are making decisions about the kind of health care they do and do not want. Their decisions are
’éthique du respect des souhaits individuels en matière de soins de santé est clair et sans équivoque dans la documentation scientifique et les politiques de soins de santé. Pourtant, les professionnels de la santé sont souvent incertains de la façon de procéder, tant au moment d’amorcer une conversation sur la planification des soins qu’au moment de respecter une directive préalable lorsque la personne n’est plus en mesure de communiquer. Bien que les directives préalables soient reconnues en common law au Canada, les lois provinciales diffèrent à l’échelle du pays et peuvent créer des obstacles à une planification préalable efficace des soins. Cet article vise à décrire un projet de planification préalable des soins entrepris par une institution de santé au Canada, qui déplace la question du document à la conversation. L’initiative Let’s Talk de Fraser Health met l’accent sur l’importance des conversations sur la planification préalable des soins pendant que les adultes sont en santé et capables de prendre des décisions et appuie les professionnels de la santé dans l’amorce de ces conversations. L’article aborde également les barrières systémiques et les grands défis de mise en œuvre dans le contexte des soins de santé et de l’environnement juridique au Canada.
informed by their own life experience and past experience with the health care system, personal and cultural preferences, and information obtained from health care providers and the Internet. While each situation is unique, there are common difficulties for individuals and families facing choices in the context of terminal illness. Many are unclear about their options and unsure about where they can go for advice. Others are clear about the kind of care they want but do not have the support to ensure that their choices are translated into effective plans. Others run into conflicts that are difficult to resolve as these issues often touch on deeply held family values and beliefs. Advance care planning conversations (planning in advance for future health care) provide a way for capable adults to communicate with their families and health care providers in a structured way regarding their wishes about end-of-life care. This has been shown to improve satisfaction with health care and to be something that patients want to do.1 However, advance care planning conversations are often not initiated by health care professionals, nor are advance directives (written or verbal expressions of a person’s advance care plan) routinely honoured when patients become incapable of communicating their decisions.
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Many of our current systems of care do not routinely provide opportunities for patients and families to be adequately informed about their health care choices; to be able to discuss and reflect on their options; and then to have support to create written plans that are incorporated into the plan of care by all health care providers in all settings. In 2004, Fraser Health (FH), a large health authority in British Columbia, Canada, recognized the need to address the advance care planning needs of their patients and families and embarked on an advance care planning initiative called “Let’s Talk”.2 This title was chosen to reflect the fact that dialogue about health care choices needs to be inclusive of all parties: patients, loved ones and health care professionals. This article will discuss the main areas of controversy and confusion around advance care planning in the Canadian context and describe the systems approach FH took to address these issues.
LITERATURE REVIEW Advance care planning has been supported in law in the United States since 1993. However in a pivotal article, Advance Care Planning: Pitfalls, Progress, Promise, Dr. J. Prendergast discussed the problems with advance directives in the United States, and highlighted the Respecting Choices® program in LaCrosse, Wisconsin as one that had demonstrated success. Dr. Prendergast concluded that "[The La Crosse approach]…fundamentally changed the standard medical approach to advance care planning"3 by “developing a system so certain routines and practices would become the standard of care”4. These systems included an emphasis on facilitated conversations by trained staff with patients and substitute decision makers that promoted shared understanding and time for reflection and discussion. Once clarity had been reached, decisions were translated into written plans and became a permanent part of the medical record. Discussions were updated as necessary to ensure that patient choice was respected. Failure to follow these plans led to further discussions about how to improve the systems of care so that these “errors” would not occur again. Important outcomes included improved satisfaction with care and less conflict and burden on families.5 As well, health care providers experienced less moral distress and a greater comfort in knowing that, no matter whether the choices were for more care or less care, treatment was consistent with patient choices. Respecting Choices® also demonstrated that trained facilitators, supported by medical colleagues, were able to significantly help patients and families come to agreement about health care choices and that all health care providers have a role in initiating these conversations and documenting them. This groundbreaking work has now been adopted in multiple sites across the United States and also throughout Australia based on initial work begun by Austin Health in Melbourne, Australia (Respecting Patient Choices6). Austin Health identified this approach to end-of-life planning as a significant cultural change: “Results from both the original Respecting Choices® program in Wisconsin, USA, and the initial program at Austin Health, have confirmed that the Program is highly successful in ensuring that patients’ future treatment wishes are known and respected in end-of-life care.” 7
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In Canada, work by Peter Singer at the University of Toronto supported the perspective of the Respecting Choices® program. Interviews with 48 hemodialysis patients led Singer et al to conclude “that (1) the purpose of ACP is not only preparing for incapacity but also preparing for death; (2) ACP is not based solely on autonomy and the exercise of control, but also on personal relationships and relieving burdens placed on others; (3) the focus of ACP is not only on completing written advance directive forms but also on the social process; and (4) ACP does not occur solely within the context of the physician-patient relationship but also within relationships with close loved ones.” 8 Although the literature identifies challenges and controversies with advance care planning and the creation of advance directives, one of the most difficult areas for most health care professionals is when there is lack of agreement or conflict among family members about health care decisions. Research with cancer, advanced renal and cardiac patients have shown that having these conversations ahead of time, rather than at a time of crisis, led to improved satisfaction with care and less conflict and burden on families.9 Although the Codes of Ethics of both the Canadian Medical Association (CMA) and the Canadian Nurses Association (CNA) strongly support the importance of advance care planning, there has been misunderstanding about whether these choices can be respected once a patient is no longer able to communicate them and whether decision-making then defers to the patient’s next of kin or identified substitute. The importance of following the advance directive of a patient made when the patient was capable is addressed in the following documents, drafted by Canadian health care organizations: 1.
The Joint Statement on Advance Directives (CNA, Canadian Healthcare Association, Canadian Homecare Association, Canadian Public Health Association, Home Support Canada, Canadian Long-Term Care Association and developed in collaboration with the Canadian Bar Association, 1994)10
2.
The Joint Statement on Resuscitative Interventions (CNA, CMA, Canadian Healthcare Association, Catholic Health Association of Canada, and developed in collaboration with the Canadian Bar Association, 1995)11
More recently, Health Canada gave credence to the significance of advance care planning in a survey of advance care planning in Canada. The Glossary Project 12 was completed by Janet Dunbrack for Health Canada and presents an overview of the wide array of attitudes, policies, and challenges regarding advance care planning and concludes that “there is a need to foster ongoing dialogue about advance care planning among the legal sector (including those who develop legislation), policy makers, health care providers and consumers so that legislation, law and policy can be both legally and medically sound and socially responsive”13. Let’s Talk: An Example of a Systems Approach Supported by the literature, a review of best practice, and feedback from the public that people wanted to have these conversations, Fraser Health (FH) began to address the end-of-life care planning needs of its patients through the “Let’s Talk” initiative.
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As a beginning step in the project, a pilot study was done with a specific patient population. Four health care professionals became certified Respecting Choices© instructors and ran a pilot project14 with 35 dialysis patients. The results of the pilot highlighted patients’ desire to have advanced care planning (ACP) conversations and their willingness to have health care providers initiate the conversation. Patients participating in the pilot expressed “gratitude” and “relief ” after going through the ACP process. The pilot demonstrated the unique challenges faced by patients in identifying a substitute decision-maker and the subsequent challenges of substitute decision-makers. The topics covered in the pilot conversations were broad and not always specifically connected to wishes for future health care. Patients and health care providers alike wanted assurance that their advance care plan would be honoured under the law and supported by the health care system. The pilot was the first step in promoting and exploring the “Let’s Talk” message.
The FH Renal Pilot and subsequent advance care planning conversations over the past 3 years concur with studies showing that patients feel more empowered and more hopeful when they are able to engage in advance care planning.15 FH identified several issues that would need to be addressed in order to support ACP in the region and set out to improve the attitude, skills, and knowledge of both health care professionals and the general public in the area of ACP. Table 1 identifies the key issues and barriers identified and how they have been addressed in the “Let’s Talk” initiative. The major issues were education of health care professionals, engagement with the public, culture and language issues and system barriers.
Table 1. Issues / Barriers and Actions Experienced in Implementing Advance Care Planning, and How they were Addresed Issue/Barrier
Action
Health care providers needed education on the importance of supporting and honouring advance care plans.
• • •
Health care providers needed tools to assist them in supporting advance care planning.
•
•
•
Health care providers are often reluctant to initiate the conversation because of their own past experiences.
•
Members of the public require information regarding advance care planning.
• • •
•
•
Educational program was developed based on the foundational work of the Respecting Choices® program. An on-line (intranet), interactive ACP education module was developed and is available to FH staff. To date, over 600 health care providers have received formal ACP education.
The My Voice Workbook© was developed to assist health care providers and the public in initiating and recording advance care planning conversations. Information pamphlets supporting ACP were developed. (Making Informed Decisions about CPR, Information Booklet for Advance Care Planning). An advance care planning e-book has been developed: Planning in Advance for Your Future Healthcare Choices©17
Education sessions include opportunities to discuss personal experiences with end-of-life. The ACP curriculum includes skills-based practice exercises in classroom sessions.
Creation of a comprehensive advance care planning website. Toll free information number for advance care planning. Advance care planning education sessions for support and service groups (i.e., Rotary, MS Society) Creation of a wallet card allowing individuals to indicate that they have had ACP conversations.
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Table 1. Continued... Action
Issue/Barrier
The need to address both cultural and language concerns re: advance care planning.
• • •
Provincial legislation re: advance directives is confusing, leading health care providers to avoid the topic.
•
Health care systems (health records, physicians’ office records) are currently not adequate to ensure that advance care planning is initiated and that wishes are honoured.
•
Need for more engagement with physician leaders
•
•
•
FH consulted (and continues to consult) with members of several communities (i.e., Chinese, Punjabi, Iranian) Punjabi translation of the My Voice Workbook©. ACP posters in 7 languages.
FH has worked closely with legal counsel on advance directives to ensure accurate information is conveyed. The legal aspects of advance directives in B.C. are taught in the formal education sessions for health care providers and the public.
Greensleeves (green page protectors) have been instituted in all acute care sites to ensure ready access to advance care planning documents at the front of each health record. FH is currently working with several physician offices to develop practical tools for recording and tracking advance care planning conversations with patients.
A focus group was held to obtain physician input on key strategic directions re: ACP.
Development and implementation of the “Let’s Talk” program has been characterized throughout by extensive consultation and collaboration to ensure applicability throughout the continuum of care. The program is innovative in the breadth of its interdisciplinary development and its attention to the cultural, emotional, spiritual and physical needs of the diverse communities within FH. It has effectively shifted advance care planning’s focus from the medical model of care to a personal, relational model and has highlighted the need for strong system support for ACP. The Legal Perspective Strong system support implies a clear understanding of the legal aspects of advance directives. Fraser Health (FH) worked with external counsel to research the law on advance directives in Canada, and particularly in British Columbia (B.C.). We learned that Canadian common law, or case law made by judges, is consistent with the ethics of advance care planning. The cases confirm that our health care providers are legally, as well as ethically, required to learn and follow the wishes of our patients and other public constituents. The FH program is based on this legal and ethical foundation. We teach our health care providers the law on advance care planning as a part of our workshop presentation, and afford them opportunities to ask questions about the legal aspects of advance directives.
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The state of the law has been an obstacle to effective planning in the past. Provincial legislation on advance care planning is quite recent in Canada, having emerged only over the last few decades, and there is a great deal of inconsistency in the legislation enacted in different provinces. Some provinces, including B.C., do not provide for instructional advance directives in the legislation and only reference proxy directives for substitute decision-making. The B.C. legislation is particularly problematic because it requires a person to consult with a lawyer who must witness the directive, known as a Representation Agreement, before it becomes effective. This expensive and onerous formality makes it difficult for many of our constituents to make a Representation Agreement, particularly if they suffer health issues that affect their mobility. In light of this legislation, we were initially uncertain of the ability to engage in effective planning with members of our community. We were relieved to know that the common law, which has effect across Canada, confirms our legal obligation to follow our patients’ wishes if they are known. However, there is both public and political awareness that B.C. needs new advance directive legislation. The B.C. Legislature proposed instructional advance directive legislation, which would remove obstacles to planning and provide people choice over the type of advance care plan they would like to make in 2006, and again in
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spring 2007. Although the legislation was not passed because of a heavy schedule that pushed it off the legislative agenda, we anticipate that the legislation will be considered again in the near future. The proposed legislation would make B.C. advance care planning law substantially similar to the modern legislation in a number of other provinces including, for example, in all the prairie provinces. We expect that advance directive legislation across Canada will continue to evolve and harmonize to ensure that it is consistent with medical ethics. The Essence of Advance Care Planning As health care providers have acknowledged the ethical and legal imperatives of advance care planning, interest in “Let’s Talk” has grown. The FH program received particular national and international attention at the May 2007 Inaugural Canadian Advance Care Planning Symposium held in Calgary, Alberta, Canada. But clearly, the most significant marker of the success of the “Let’s Talk” initiative is the impact of advance care planning in the lives of individuals. The following personal stories illustrate the value of advance care planning and serve as inspiration to continue working in the advance care planning arena: John’s Story John was a husband and father in his early 50s when he was diagnosed with terminal cancer. The month following his diagnosis was devastating for John, his wife, and adult children. When John’s sister-in-law shared FH’s ACP materials with the family, a previously locked door was opened. John began having conversations with all the family and with his doctor. Prompted by the My Voice Workbook©16, John was able to identify several goals for what remained of his life. Among other things, he wanted a birthday party and he wanted to finish restoring the antique car he kept in his garage. The birthday party was quickly arranged by John’s family. The car restoration was supervised from John’s hospital bed. Because of the open conversations John and his wife Helen were able to have, Helen was able to make a difficult decision to take a leave of absence from her job during the last months of John’s life. Today, she still credits the ACP conversations with giving her the gift to grieve with her husband throughout the dying process. Helen is clear that without the My Voice Workbook© and supporting materials, the conversations would not have happened and she would not have been sure about what her husband really wanted. Ruby’s Story Ruby is 80 years old and was recently diagnosed with lung cancer. Just 2 years ago her husband died from Alzheimer’s disease. Ruby was asked to make many decisions on her husband’s behalf after he became incapable of decision-making. She was often unsure of what he would have wanted. Ruby decided to make an advance care plan for herself, in order to make her doctors, family members, and close friends aware of her choices for future health care. After reflecting on her wishes for future health care and deciding what would be important to her should she become incapable of communicating her wishes, Ruby made a written advance care plan and discussed her wishes with her doctor, family members, and close friends. Ruby expressed a sense of relief at the completion of her advance care plan.
Kate’s Story Kate is an athletic 37 year old teacher who has been recently diagnosed with rapidly progressive ALS. Since discovering her diagnosis and prognosis she has learned much about the trajectory of ALS and is clear about what treatment options she would want. Kate’s family members differ amongst themselves regarding the type of treatment they would choose for Kate when she becomes incapable of speaking for herself. With the support of her doctor, Kate arranged for a meeting with her family members. She told them about her wishes and gave them all a copy of her written advance care plan. Although some of her family members do not share Kate’s perspective on treatment options, they have all assured her that they will honour her wishes when she is no longer able to choose for herself. Every day, in health care settings across the country, patients are talking about what they would want or not want done should they become incapable of making their own health care decisions. The “Let’s Talk” initiative provides support to these individuals to begin to reflect on what gives their lives meaning, make decisions for themselves, and discuss their choices with health care providers, family members, and friends. While there will continue to be ethical, legal, and medical issues to address, the “Let’s Talk” initiative has laid a strong foundation for advance care planning, not only in the Fraser Health Authority, but across Canada.
CONCLUSION Advance care planning must be grounded in a personal relational model if it is to be adopted by the general public. The health care system’s ability to provide an infrastructure to support such a relational model of advance care planning is critical to ensure that individuals have their health care choices honoured. Barriers to building a strong advance care planning system include lack of knowledge on the part of health care providers and the public, confusion regarding the law as it applies to advance directives, and limited financial resources to provide education and infrastructure. The challenge remains for health care providers to become informed about and champion the advance care planning process regardless of the clinical setting.
ADDENDUM “On October 22, 2007, Bill 29, a section of which entitles capable adults to give instructional advance directives to health care providers, received 3rd reading in the British Columbia Legislature. When the new legislation comes into force, an advance directive that has been signed by a capable adult and witnessed in accordance with the legislative requirements will be legally binding on health care providers in the province.”18
ABOUT THE AUTHORS Sue Grant has been the Project Leader for Fraser Health’s Advance Care Planning initiative since 2003. Her 25 years in health care management include a wide range of specialties, from critical care nursing to home care nursing, palliative care, paediatrics, and residential care. Her work in the field of advance care planning has set benchmarks for best practice and has helped to shift advance care planning from a medical to a relational model.
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Joan Rush is a lawyer consulting in the areas of health law, corporate governance, insurance law, and legal issues relevant to health care providers and the financial services industry. Prior to establishing her consulting practice, Joan was Vice President and General Counsel of a Canadian life insurance company. Joan is a member of the Board of Directors for Community Living B.C., a Crown Agency, and is a member of the B.C. Cancer Agency Research Ethics Board and its Ethics Advisory Committee. She is a former adjunct Professor at the Faculty of Law, University of British Columbia. Joan completed her LL.M. thesis in the area of health law and ethics in 2005 and received her Master of Laws degree from UBC in 2006. Dr. Doris Barwich has been the Medical Leader for Hospice Palliative / End-of-Life Care Services in Fraser Health Authority since 2001. She also works as a Palliative Care Consultant at the BCCA Fraser Valley Cancer Centre. She is also the Chair of the BC Learning Centre for Palliative Care and of the BC / Yukon Education Working group under the Quality End of Life / Palliative Care Action Group, Canadian Strategy for Cancer Control. Carolyn Tayler is presently the Director, Hospice Palliative and End of Life Care for Fraser Health. She has worked in a variety of settings with cancer and palliative patients over the last 35 years. She is a Past President of the Canadian Association of Nurses in Oncology and is currently the Past President of the BC Hospice Palliative Care Association and was Chair of a Pallium Initiative to develop western Canadian palliative care telenursing protocols. She is a member of the End-of-Life Standing Committee in British Columbia and Co-Chair of the Canadian Strategy for Cancer Control B.C. / Yukon Quality End of Life and Palliative Care Action Group.
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10. Canadian Nurses Association, Joint Statement on Advance Directives. Ottawa: Canadian Nurses Association, 1994 [cited 2007 Oct 18]. Available from:http://www.cna-aiic.ca/CNA/ documents/pdf/publications/PS20_Advance_Directives_Sept_ 1994_e.pdf 11. Williams JR. Consensus finally achieved on resuscitative interventions. CMAJ. 1995;Nov:153;11:1641-2 [ cited 2007, Oct 18]. Available from: http://www.cmaj.ca/cgi/content/abstract/153/11/ 1641?ck=nck 12. Dunbrack J. Advance care planning: the glossary project. Ottawa: Health Canada, 2006 [cited 2007 Oct 18]. Available from: http://www.hc-sc.gc.ca/hcs-sss/pubs/palliat/2006-proj-glos/ index_e.html 13. Dunbrack J. Advance care planning: the glossary project: final report. Ottawa: Health Canada, 2006 [cited 2006 Oct 18]. p 5. Available from: http://www.hc-sc.gc.ca/hcs-sss/pubs/palliat/ 2006-proj-glos/index_e.html 14. Grant S. Fraser Health ACP Renal Pilot. Surrey (BC): Fraser Health Authority. 2004. 15. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ. 2006;Oct 28;333:886 16. Grant S. My voice workbook©. Surrey (BC): Fraser Health Authority, 2007 [cited 2007 Oct 18]. Available from: http://www.fraserhealth.ca/NR/rdonlyres/e7yv47i3fd23yrb67m 77o7oqqht5v6e66b67i25cg5rkvaktsrv2p5gsiqeuliog3ovqhe4ywl yhmm/MyVoiceWorkbook.pdf 17. Grant S. Planning in advance for your future health care choices©. Surrey (BC): Fraser Health Authority, 2007 [cited 2007 Oct 18]. Available from: http://www.fraserhealth.ca/NR/rdonlyres/ e5kcl7u4ba4adyl24nywo24kzfake275yuczaaejhpbqjospbc6psbm 6jpmtut3rrbxznc7pg23n3i/ACPebook.pdf 18. B.C., Bill 29, Adult Guardianship and Planning Statutes Amendment Act, 2007, 3rd Sess., 38th Parl., (3rd reading 22 October, 2007).
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