Advance Care Planning: the Glossary Project - Final Report

Prepared for Health Canada by Janet Dunbrack
2006

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Table of Contents

• Executive Summary
• Introduction
• Main concepts and terms used in advance care planning in Canada
• Understanding of advance care terminology
• Experience of advance care planning in Canada
  • Health care sector
    • Implications - health care sector
  • Social sector
    • Implications: social sector
  • Legal sector
    • Implications: legal sector
• Successes and challenges in advance care planning
  • Successes in advance care planning: key factors
  • Challenges in advance care planning
• Options for further work
• Appendices
• Appendix 1: Advance Care Planning Glossary of concepts and terms
• Appendix 2: Brief overview of legislation and practice in Canadian provinces and territories
• Appendix 3: Key informants interviewed
• Appendix 4: Questionnaire for key informant interviews
• Appendix 5: Resources
• Notes

Executive Summary

This report seeks to bring clarity to the concepts and terms used in advance care planning in Canadian provinces and territories and in the health, social and legal sectors in order to facilitate pan-Canadian dialogue about advance care planning. The report examines commonly-used concepts and terms and the ways in which they are understood by professionals and consumers. The report also provides an overview of experience with advance care planning in Canada and identifies factors which contribute to successes and challenges in advance care planning. It presents options for further work by the Public Information and Awareness Working Group. Appendices to the report contain a glossary of advance care planning concepts and terms and a brief overview of legislation and practice in Canadian provinces and territories.

Information for the report was gathered from literature and web-based research and from interviews with 56 key informants representing the health, legal and social sectors, including consumers.

In general, key informants thought that the concepts of advance care planning are easy to understand but that the terminology can be confusing. Key informants in the health sector who are experienced in advance care planning have a good understanding of terminology and can translate terminology into accessible language when communicating with patients and clients. Those with less experience report more confusion over terminology. Informants who work at the pan-Canadian level expressed the need to understand the varied terminology used in all jurisdictions to mean similar things.

The informal term living will is instantly recognized by all, but is passing out of use in favour of advance directive or the exact terminology used in provincial/territorial legislation. Key informants in the social sector tend to be less familiar with advance care planning terminology because they have less direct experience. Consumers report confusion over terminology and tend to use the terms used by their lawyer or physician. Those in the legal sector tend to be familiar with the terminology used in legislation in their jurisdiction. Key informants from all sectors thought that confusing terminology presented a barrier to consumers which could discourage them from engaging in advance care planning, although many thought that this barrier might be a rationalization used to avoid dealing with an uncomfortable subject.

The rich collective experience of key informants indicates some important trends with respect to advance care planning:

• There are pockets of strong expertise across Canada and other areas with little knowledge. Information sharing could be helpful to those in all jurisdictions.
• Successful programs have effective systems that support the development of advance directives and ensure that all members of the health care team are aware of a patient's advance directive throughout the continuum of care.
• Effective, ongoing communication is essential to effective advance care planning: between the patient and family; between the patient/family and the health care team; and among the members of the health care team.
• Successful advance care planning often begins well in advance of serious illness.
• Raising the subject of advance care planning with patients can be difficult for health care providers and fearful for patients. Nevertheless, there is evidence to suggest that many consumers are eager to discuss advance care planning if they are given the opportunity in a supportive environment.
• Education, user-friendly tools and resources are needed by professionals in all sectors and by consumers. Some suggested that a web-based national information resource centre or clearinghouse could meet this need.
• Key informants from all sectors stressed the importance of understanding the core concept of informed consent to treatment which underlies advance directives. Many spoke of the challenges in determining a patient's capacity to give informed consent, particularly because consent must be based on the immediate treatment proposed. The patient's capacity must be frequently assessed because it can vary and may be adequate for consent in one area and not in another. Family caregivers and health care providers mentioned the difficulty of determining cognitive impairment when dealing with particular diseases. Some suggested that advance directive guidelines could be created for specific health or disease conditions.
• Limited staff time and ineffective systems of communication and awareness of advance directives can lead to ignoring the provisions of a patient's advance directive.
• Informants in the health and legal sectors voiced strong opinions about the merits of proxy versus instructional directives. Those in favour of proxy directives stressed their flexibility in response to changing circumstances; those in favour of instructional directives stressed the individual's right to autonomy, privacy and choice without reference to substitute decision makers.
• 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.
• Research and evaluation are needed to increase the evidence base for advance care planning and to provide a foundation for evaluating processes and measuring outcomes.

Options for further work by the Public Information and Awareness Working Group are suggested, focusing on: knowledge-sharing; best practices identification and dissemination; education; developing user-friendly tools and resources; research and evaluation; and national awareness-raising campaigns targeted at the public and professionals.