A. What is the Law Commission of Ontario’s Project about?
The Law Commission of Ontario’s (LCO) project, Improving the Last Stages of Life, considers how the law shapes the rights, choices, and quality of life for persons who are dying and those who support them. The project seeks to address the experiences of everyone involved in the dying process, including: individuals, caregivers and other family and friends, health care institutions and professionals, government, other professionals, and community organizations. Our goal is to hear from these groups to better identify and recommend law reforms that are concrete, precise, and responsive to the experience of persons in the last stages of life.
The purpose of LCO’s discussion paper is to encourage and facilitate public engagement on various issues affecting rights and care in the last stages of life and to invite you to participate in our project. In addition to this paper, the LCO will also be organizing consultation meetings, forums, focus groups and individual interviews across the province throughout the spring and summer of 2017.
For a schedule of public consultations and other information about the LCO’s Last Stages of Life Project, please visit our website at http://www.lco-cdo.org/laststages
This discussion paper comes at a critical time. Canadian law, policies and values about death and dying are changing, and there is growing demand for compassionate care that supports a wide range of these values and expectations. Death is an immensely significant experience that each person faces as an individual, family member, friend and participant in broader community networks. Many of us value death and the dying process as a uniquely meaningful stage in life and we approach it with mixed sensibilities – from confusion and grief to a sense of celebration and release.
The “last stages of life” is the broad and inclusive term we use in this project to capture this experience of dying as a process or a continuum of events, whether as a result of terminal illness, chronic conditions or serious frailties that could progress until the end of life. Some such persons may have little time left to live, while others may transition through the dying process for an extended period of years. The LCO’s definition of “last stages of life” is unique. Our objective in selecting this term is to distinguish the experience of persons who are dying – as a particular stage in life – from established models of care that may be beneficial during the dying process, most notably palliative and end-of-life care.
Terms such as “last stages of life”, “care” “palliative care”, “end-of-life care”, “treatment” and “accompaniment” are defined in the Glossary at Appendix A.
The importance of these issues cannot be underestimated. The proportion of individuals entering the last stages of life in Ontario is expected to increase appreciably in the coming years as the “baby boom” generation continues to age.  Ontarians are also living longer as a result of medical innovations that prolong life; however, we are living longer with chronic illness and complex care needs. Coping with the growing demand for services and supports affects hundreds of thousands of Ontarians; their extended networks of family, friends and caregivers; and countless institutions. Every Ontarian – no matter what their stage of life – has an interest in the dying experience.
The LCO’s project situates these concerns with the last stages of life within Ontario’s legal framework and examines the possibilities for reform. The need for a review of legal frameworks at this time is clear. There are numerous laws and policies that require updating, clarification and simplification, and that currently inhibit access to just outcomes. The LCO’s project asks questions about how to address these challenges, so that the law can facilitate – not hinder – improvements across the health, social and legal sectors.
The LCO has interest and expertise in these issues as Ontario’s leading law reform agency. We provide independent, balanced, and authoritative advice on some of Ontario’s most complex and far-reaching legal policy issues. Our process evaluates laws impartially, transparently and broadly. The LCO’s work is informed by legal analysis; multidisciplinary research; public consultations; social, demographic and economic conditions; and the impact of technology.
As part of this process, the LCO is mindful of rapid and ongoing federal and provincial initiatives actively shaping the legal, regulatory and policy frameworks governing the “last stages of life.” This project has evolved alongside these developments. The key questions asked in this paper have been refined to expand the scope of intersecting issues rather than duplicating governmental initiatives, particularly as they relate to two principal subjects: palliative care and medical assistance in dying (MAID). This paper similarly draws on findings from several completed and ongoing LCO projects, most notably reports regarding capacity and decision-making, older adults, and persons with disabilities. Related ongoing government initiatives and LCO projects are overviewed below, in sections C and D.
For more information on the LCO’s Last States of Life Project Scope Statement, and for regular updates on the project, please visit our website at http://www.lco-cdo.org/en/laststages
- To access reports and other documents from the LCO’s past and ongoing projects, please visit our website at http://www.lco-cdo.org/
B. What key questions do these consultations raise?
The paper synthesizes the LCO’s considerable research and background consultations to date, and asks both general and specific questions about key issues. The issues and questions identified in this paper are neither final nor exhaustive. Participants are welcome to make submissions on any additional topics they believe are relevant to the project scope.
- A comprehensive list of questions the LCO has posed in this discussion paper is listed in Appendix G, “Questions for Discussion”.
The Importance of Care in the Last Stages of Life (chapter 2): One consequence of the LCO’s inclusive approach to defining care in the last stages of life is that we must account for diversity in Ontario’s communities and regulatory frameworks. The project seeks to address the experiences of everyone involved in the dying process, including: individuals, caregivers and other family and friends, health care institutions and professionals, government, other professionals. It also means considering how the quality of care in the last stages of life varies considerably across different communities of need, which may be defined by age, disability, LGBTQ identity, Indigenous identity, income level, place of residence and homelessness, mental health, faith, culture and others. The LCO has made efforts to explore how diversity influences the issues under consideration in the project. This inclusive approach also means keeping up-to-date with dynamic and ongoing legislative developments affecting the last stages of life.
1.Within the scope of LCO’s project, are there any additional affected individuals, communities, and institutions that should be taken into account?
2. Are there any additional recent debates or legislative frameworks that LCO should be aware of?
The Law and Care in the Last Stages of Life (chapter 3): This chapter summarizes existing laws which intersect with the last stages of life. The chapter demonstrates how a wide array of fundamental legal rights and principles affect the delivery of health care. There are also limits on the law, as well as different legal traditions in Canada including Indigenous legal traditions and religious laws. These also impact on professional standards, where there are competing views about the potential conflict between legal and medical conceptions about rights and care. This is an important question for this project, and illustrate how law reform is relevant to what may be perceived as medical, administrative or public policy issues in the last stages of life.
3. What legal rights and principles are important for shaping care and establishing professional standards in the last stages of life?
Ontario’s Laws, Policies and Programs (chapter 4): Laws, policies and programs create a framework defining several core aspects of the last stages of life in Ontario: the approach to and delivery of palliative care services; health-care decision making, planning, and substitute consent; medical assistance in dying; and resolving health care disputes. A considerable amount of discussion is taking place around key controversies in these areas, including a “public health” approach to palliative care, access to palliative care, and access to medical assistance in dying. In addition to these there are other laws which also intersect with medical assistance in dying, raising issues related to capacity assessments, transitions in care, employment concerns, caregiver benefits, insurance coverage, and rights in long-term care and retirement homes.
4. Legislation governing health care, housing, employment, professions, and other areas intersects with the last stages of life – what gaps exist that would benefit from greater certainty or clarity?
5. Should a public health approach to palliative care be integrated into Ontario’s regulatory framework, and how would it look on the ground?
6. The LCO has identified several areas where medical assistance in dying could be clarified, including transitions in care, conscientious objection, and appeals of capacity determinations. Are there other additional issues to consider?
Access to Justice for Communities with Unmet Needs (chapter 5): Recent government reviews of palliative care confirm that Ontarians suffer marked disparities in accessing quality care in the last stages of life. LCO has particularly identified unmet needs respecting different communities. These include caregivers and other families and friends; persons living in long-term care and retirement homes; First Nations, Inuit and Métis people; persons experiencing homelessness; persons with disabilities; and faith and culturally diverse communities. There are various strategies, controversies, options, and choices in terms of accommodating these diverse communities.
7. What are your experiences as a member or supporter of a community of need going through the last stages of life?
8. What law reforms do you believe are needed for communities with unmet needs, and how would such reforms be most effectively implemented in law?
9. Are there any communities with unmet needs who are not identified in this paper that the LCO should consider?
Specific Challenges to Accessing Care in the Last Stages of Life (chapter 6): This chapter considers issues related to autonomy, self-determination, beneficence (and maleficence) in care, and safeguards against abuse. These arise in several specific contexts, including the legal framework for, and public understanding of, consent and advance care planning; decision-making authority over life-sustaining practices, including withdrawal and withholding of treatment, CPR, and nutrition; palliative sedation therapy; managing planned deaths at home; the experience of supporting professionals; and accommodation and supports for faith and cultural communities. Unclear legal regulation of these issues leads to uncertainty and conflict, but must also contend with difficult controversies related to who has decision making authority in critical situations.
10. How can institutions, professionals and the public be better supported to obtain meaningful and legally compliant health care consent?
11. How can practice tools achieve the goal of providing accurate, consistent and meaningful information about consent and advance care planning?
12. There are connecting laws, principles and policies regarding decision making for life-sustaining practices such as CPR, DN, and nutrition. What are the strengths, weaknesses and gaps in Ontario’s current legal framework for decision-making authority over life-sustaining practices?
13. Who should have authority to determine whether life-sustaining and lifesaving treatment (e.g., CPR, DNR) is offered to, or withdrawn from, a patient – the patient (or SDM) or a health care provider? Under what circumstances?
14. Should Ontario regulate the offering of food and water to persons nearing the end of life, including the authority of SDMs to consent to withholding necessities of life?
15. Should Ontario regulate the clarity, consistency and safety of palliative sedation therapy considering the ethical challenges, medical assistance in dying, and the need for safeguards like informed consent?
16. Which options are preferred to better plan for and manage expected deaths at home? Would i