End-of-Life Ethics and Decision-Making:
Current Policy Debates about Withholding and Withdrawing Life-Sustaining Treatment
Prepared for the Canadian Institutes for Health Research
June 9, 2008
Winnipeg, Manitoba
Editors: Rhonda Wiebe and Lea Neufeld
VP-NET Ethics theme research team: Joseph Kaufert, Rhonda Wiebe, and Lisa LaBine
Planning Work Group: Rhonda Wiebe, Joseph Kaufert, Jim Derksen, Pat Murphy, George Webster and Lindsey Troschuk
VP-NET Investigators: Harvey Chochinov (PI), Deborah Stienstra (PI). Zana Marie Lutfiyya, Joseph Kaufert
A “Knowledge Translation” forum sponsored by:
Canadian Institutes for Health Research
Health Care Ethics Service, St. Boniface General Hospital
Community Health Sciences, University of Manitoba
Table of Contents
I. CONFERENCE Overview 4
Rhonda Wiebe, Joseph Kaufert and Lea Neufeld
i. The Context: VP-NET research on ethical dimensions of end of life decision-making for vulnerable persons 5
ii. Previous VP-NET Activities 5
iii. The Conference: An example of alternative approaches to Knowledge Translation 7
iv. The Context of the Workshop as Safe Ethical Space 8
v. Assuring Accessibility and Balanced Representation 8
II. POLICY Context & Alternative Perspectives: A Local Case Study
Rhonda Wiebe and Joseph Kaufert 11
i. The Process: Developing the Conference within a Community Context 12
ii. The Planning Work Group 12
iii. Facilitating Access 13
III. CONFERENCE PRESENTATIONS
Welcome: Continuing a dialogue in contested areas 15
Joseph Kaufert & Rhonda Wiebe
The CPSM Statement on Withholding and Withdrawing Life-Sustaining Treatment 17
Bill Pope
The legal status of unilateral withholding & withdrawal of treatment: A national overview
Jocelyn Downie 37
Whose decision is it anyways? An exploration of unilateral withholding & withdrawal of potentially life-sustaining treatment in Manitoba
Jocelyn Downie 44
Between a rock & a hard place: Is the CPSM Statement an ethical remedy?
George Webster 52
Exploring the ethical foundations for life-sustaining treatment
Merril Pauls 58
Focused concerns of people with disabilities on ending of life
Jim Derksen 63
TOWN HALL DISCUSSION: Probing the ethics of the ‘minimum goal of life-sustaining treatment’ and a physician’s final authority
Marie Edwards, Nancy Hansen, Heidi Janz, Bruce Light, Dean Richert 65
Reflection: The Path of Least Regret
Michael Harlos 87
IV. REPORT CONCLUSION 90
i. Conference Evaluation 92
ii. Future and legacy of the project 95
Rhonda Wiebe
V. APPENDICES 99
i. Event brochure 100
ii. Event program 102
iii. Event evaluation tool 110
iv. College of Physicians and Surgeons of Manitoba Statement on Withholding and Withdrawing of Life Sustaining Treatment 114
v. Plain language translations of presentations 129
*** The planning group made the decision to forgo designated format credentials for all participants in order to encourage a sense of equality between presenters.
VP-Net 2008 End-of-Life Ethics and Decision-Making Forum
i. Conference Overview
Rhonda Wiebe, Joseph Kaufert and Lea Neufeld
This conference was designed to provide an opportunity to exchange information and discuss ethical understandings of what has increasingly become a complex issue for both Manitobans and Canadians. This event was part of the work of the Vulnerable Persons New Emerging Team (VP-NET) project examining end-of-life decisions for persons made vulnerable. Populations considered particularly at risk in decision-making situations include persons with chronic illness, disability, the elderly, and other socially marginalized groups. Participants were provided a balance of perspectives that supported a variety of ways in which end-of-life decisions are made.
This one-day event included sessions that introduced ethical, legal and policy overviews of activity in Canada concerning the withholding/withdrawal of medical treatment and end-of-life decision-making.
The impetus for this conference grew out of data from the research of the ethics theme and other areas of VP-NET data that indicated a significant concern expressed by persons experiencing vulnerabilities, their families, service providers, disability advocates and healthcare providers regarding confusion around frameworks for end of life decision-making. Coincidently, the College of Physicians and Surgeons in Manitoba had released a statement on withholding and withdrawing life-sustaining treatment the previous February that raised considerable questions amongst interested stakeholders in our province. We invited a representative from the College to share with participants the genesis of the statement and what influenced its formation. Additional conference speakers introduced some commentary on the CPSM Statement in comparison with documents from other provinces. Presenters discussed the impact of such controversial court cases as Lavallee and Sawatzky on policies and laws across Canada. A group of five panelists provided expert ethical, medical, legal, nursing, and disability studies perspectives on two particular points within the CPSM statement, namely: how does one define the goal of minimal treatment; and, how should we understand the role of the physician’s authority?”
i. The Context: VP-NET research on ethical dimensions of end-of-life decision-making for vulnerable persons
The Ethics Theme is one component of a five year multidisciplinary research team, the Vulnerable Persons New Emerging Team (VP-NET.) The overall goal of the team is to collectively build an interdisciplinary framework for understanding end-of-life care from the perspectives of people with longstanding disabilities, chronic illness and elders who experience barriers in accessing services, information and community supports. One component within the cross-thematic VP-Net collaboration has focused on ethical dimensions of decision-making. Examining the experiences of people with disabilities, professional care providers, family members and others who facilitate decisions in potential end-of-life situations are key to the Ethics Theme.
ii. Previous VP-NET Activities
The work of Dr. Joseph Kaufert, Rhonda Wiebe and, until May 2008 Lisa LaBine (Faculty of Medicine, University of Manitoba) entails identifying the value systems and clinical decision frameworks of people with disabilities, their family/support circles, and service providers concerning health care for people with disabilities who face critical end-of-life circumstances. The research involves conducting in-depth interviews and focus groups with physicians and other healthcare providers, non-medical service providers, legal and ethical experts, people with disabilities and members of their families/support circles, and disability rights and patient advocates. Research findings highlighted for this report pertain to the re-framing of two social concepts – that of vulnerability, and end-of-life.
The goal of previous VP-NET events and endeavours has been to create dialogue-based relationships between health care providers and people who experience vulnerability. In 2006, the VP-NET held a Spring Institute which explored “A Good Life until the End: Palliative Care and People with Disabilities.” Its purpose was to create an environment for mutual engagement between people with disabilities and palliative and other physicians concerning the issues of devaluation and resource allocation. This dialogue was further developed through “Voices at Dying: Dying to Be Heard,” a dramatic presentation written and produced by Heidi Janz, VP-NET post-doctoral fellow and playwright. Using drama was a powerful medium to convey knowledge about the issues surrounding people with disabilities and end-of-life care.
A second VP-NET Think Tank in 2007 focused on synthesizing and documenting the knowledge and experiences of participants’ vulnerability during end-of-life. The data collected from this Think Tank has been and will continue to be used to create documents furthering the dialogue between the two communities.
Part of the narrative of many people with disabilities gleaned from individual interviews, focus groups and community forums documented in all four thematic areas of the VP-NET is the perception that their quality of life is significantly devalued within their wider socio-cultural environments. This social devaluation occurs at personal, familial, community and systemic levels, including professional settings that involve healthcare decision-making. It also occurs in news media, literature, film and television. Such persons are portrayed as one-dimensional characters that lose dignity and autonomy as a result of disability, and these losses culminate in decisions that can involve either the choice for them to end their own lives, or the choice on the part of someone else to end their lives for them. The pervasiveness of social conditioning through media and cultural exposure provides little accountability or scrutiny of possible discrimination, and the disability community has vocalized its concern that healthcare professionals, including those that make end-of-life decisions &/or those who develop policies that direct such decisions, do not adequately take into consideration how they are influenced by the social devaluation of people with disabilities.
These events and other areas of our research strongly indicate that people with disabilities and others facing vulnerability demand full participation in decisions about their own healthcare. People want the opportunity to participate fully in treatment decisions, including those involving end-of-life deliberations, by situating these decisions within the context of their own life experience.
iii. The Conference: An example of alternative approaches to knowledge translation
Operating grants from the Canadian Institute of Health Research (CIHR) are contingent on the capacity for recipient scholars to plan and implement knowledge translation (KT) gained as a result of research. CIHR’s definition of knowledge translation and its relationship to health research is summarized as:
The exchange, synthesis and ethically sound application of knowledge within a complex system of interactions among researchers and users - to accelerate the capture of the benefits of research through improved health, more effective services and products and a strengthened health care system.(Focus report No 18, 2007)
Although this definition has been modified to describe the contributions of various areas of research, including those in biomedical, clinical, health systems services and population and public health spheres, it does not fully engage the reciprocal flow of knowledge between stakeholder groups in participatory initiatives. The experience of the VP-NET project and interviews with stakeholder groups by the ethics theme emphasized the need for KT to encompass two way Knowledge Transfer between individuals with specific expertise in the consumer community and stakeholders in health research, service provider and bioethics communities.
Frequently, models of KT are based on dissemination of research products that are empirically derived; in other words, the baseline validity criteria exist to support a single “best answer.” However, policy, law and bioethics research often focuses on issues that are unresolved or contested where no final consensus has been achieved. This posed an interesting and unusual challenge for the VP-NET team: how can KT be implemented when the research indicates there are alternative, and at times conflicting, values and interpretations of valid knowledge and its applications in ethical decision-making and policy development?
The VP-NET research team developed comprehensive qualitative data on the perspectives of the major stakeholder groups and these narratives showed areas of disagreement on fundamental issues including interpretation of quality of life, efficacy of life-supporting care interventions, and the ultimate authority in decision-making and resource allocation. However the primary function of the End of Life Ethics & Decision-Making workshop was to bring spokespersons for these positions into an accessible forum rather than summarizing the extensive narrative data from the ethics focused VP-NET research. The forum also focused on an actual policy and its current impact on fundamental decision-making by clinicians and the related concerns of vulnerable persons, organizations and family networks representing their interests.
iv. The Context of the Workshop as Safe Ethical Space
One way to meet this challenge was to develop an alternative approach to knowledge translation in ethical and policy contexts where there is no consensus by situating alternative perspectives and their advocates in an open and transparent forum. These venues enabled stakeholder groups and individuals to define and discuss differing values and policy perspectives. This was achieved through the KT initiative in the third phase of the VP-NET project which brought the alternative values and policy frameworks in a contested policy into a domain that included both relevant stakeholders groups and the general public.
v. Assuring Accessibility and Balanced Representation
The prior history of limited interaction between the disability community, the medical profession, and the legal system consisted of sometimes opposing perspectives on:
· Ethical approaches to decision-making at end-of-life, and
· Policies on withholding and withdrawing of life-sustaining treatment.
Such previous discourse made it imperative that this conference be accessible and inclusive of stakeholders with all points of view. Planners implemented the following key components to ensure fair representation and dialogue:
1. All participants were to be assured of adequate time, communication access (e.g. availability of American Sign Language interpretation and brailed documents) and unbiased facilitation;
2. The event needed to be designed as a “community commons” where all perspectives could be shared in a “safe ethical space” without fear that opposing voices might face future retribution;
3. Presenters and panelists represented a wide variety of population sectors, some of whom developed their expertise in academic settings and others from life experience. The planning work group made the decision to forego the use of titles such as “doctor,” “professor,” etc. in order to encourage a sense of equality between presenters.
4. A moderator that was well-established as demonstrating a fair and balanced public interest needed to be engaged. Terry McLeod, host of a CBC Radio provincial morning show, is a well-known and highly regarded Winnipeg figure. He was approached and agreed to play this role.
5. Key speakers who were able to present both balanced and critical perspectives on professional practice, policy initiatives and disability concerns at provincial, and national levels needed to be identified and recruited;
6. A cultural context of mutual respect and civility for the meeting needed to be established.
7. A context that avoided over-representing or stereotyping a single perspective needed to be fostered and exhibited to the media reporting on the event; and
8. Prior to the conference, print and other media had played a significant role in giving visibility to issues discussed at this event. The planning work group engaged the services of a media liaison to develop connections with local and national radio, television, internet and print media representatives and to provide them with direct, accurate information about the purpose of the event and the information presented. The media coordinator arranged interviews between conference speakers and local and national news representatives, and collected all news coverage pertaining to the event for the VP-NET research team.