Advance care planning: the Glossary project - Final report

Introduction

Background

This report arose from the need to bring clarity to the concepts and terms used in advance care planning in the various Canadian jurisdictions and in the health, social and legal sectors in order to facilitate pan-Canadian dialogue about advance care planning

Advance care planning has been identified as a priority issue by the Public Information and Awareness Working Group of the Canadian Strategy on Palliative and End-of-Life Care. As Canada's population ages, more Canadians will require end-of-life care. Each year more than 248,000 Canadians die; by the year 2020, there will be an estimated 330,000 annual deaths.^[1] Increasingly, Canadians will be pondering how they want to be cared for during chronic and terminal illness and whether they will prepare advance directives. Most Canadians still do not discuss their wishes for end-of-life care with their families or their family physician. A survey conducted in 2003 revealed that 40% of Canadians talk to their family members about their last wishes and 10% discuss their wishes with their family physician. ^[2]

There is a growing awareness of the need to consider advance care planning. Several high-profile cases in recent years have raised public awareness of advance directives and their role in withdrawal of treatment. Since the mid-1990s, all Canadian provinces and territories, with the exception of Nunavut, have enacted legislation concerning advance directives for health and personal care.

In March 2005, the Secretariat on Palliative and End-of-Life Care, Health Canada, hosted an invitational forum on advance care planning. It became evident at that meeting that there are regional, provincial, sectoral and cultural differences^[3] with respect to terminology, definitions and interpretation of most aspects of advance care planning. Accordingly, this report was commissioned to develop a cross-sectoral glossary of terms and definitions that comprise advance care planning concepts, tools, instruments and dialogue across Canada. It was anticipated that the report would help to provide a common ground for communication and understanding that would contribute to the development of an effective action plan for cross-sectoral collaboration to encourage the integration of advance care dialogue and instruments for end-of-life care into health care delivery and practice models.

After the report was commissioned, further discussion by the Public Information and Awareness Working Group led to a broadening of the objectives for the report to include the perspectives of those working in the health, social and legal sectors with respect to their approaches to advance care planning and their experience in dealing with advance directives.

The report is intended to provide a clearer picture of what is happening in the various jurisdictions and sectors and to shed light on successes and challenges in advance care planning. It also suggests options for further work by the Public Information and Awareness Working Group. The report includes a glossary of commonly used concepts and terms (Appendix 1) and a brief overview of legislation and practice in Canadian provinces and territories (Appendix 2).

Methodology

Information for this report was gathered from:

• Interviews with 56 key informants in the health, social and legal sectors, including consumers and volunteers (see Appendix 3 for a list of key informants). In the body of the report, the persons interviewed are referred to as key informants or informants.
• Literature and web-based research (see Appendix 5 for a list of primary resources).

The information-gathering process focused on obtaining a reasonable depth and diversity of perspectives within the health, social and legal sectors. The key informants were drawn from those with experience in end-of-life care, chronic and long-term care and disability issues. Some key informants work in health care management, policy development, the legal profession or research. An exhaustive in-depth survey of each sector and profession was beyond the scope of this report, as were a detailed analysis of the many legal questions associated with advance care planning and advance directives and the situation of dependent adults and guardianship, which is a large field that has implications for advance care planning. There were enough interviews, however, to verify and confirm major trends that were repeatedly stated by key informants.

Acknowledgements

Sincere thanks are extended to all those who supported the development of this report: Health Canada staff; members of the Public Information and Awareness Working Group and its Advance Care Planning Task Group; and especially to the 56 key informants who contributed their time, expertise, insights and follow-up resources. Special thanks to Karen McEwen, Joan Rush, Ann Soden and Judith Wahl who gave feedback on legal questions at various stages in the development of the report.