Advance care planning: the Glossary project - Final report

Successes and challenges in advance care planning

Successes in advance care planning: key factors

A number of informants reported experience with successful advance care planning. Based on the research and interviews, the following are key factors in success:

• Open communication over a period of time between:
  • patient and family members
  • physician and family
  • members of the care team
• Initiating the advance care planning dialogue while the patient is capable of making decisions and is relatively healthy, rather than trying to do advance care planning in a health crisis.
• The presence of a trained facilitator during at least 2-3 meetings with the patient and family to support opening and sustaining the conversation
• Congruence of values between patient/family and the physician/health care team
• Trusting relationships between the patient/family and the care team
• Systems and structures that support advance care planning, including time and resources devoted to it and procedures that ensure that the patient's wishes are known and followed to the extent possible
• Mechanisms for ensuring that the advance directive is readily available to all health care providers (including paramedics called to the home) in all settings: the advance directive follows the patient throughout the continuum of care.

Challenges in advance care planning

The following factors were consistently identified as challenges or barriers to effective advance care planning:

• The inability to talk about it by all concerned
• Fear of facing the thought of illness and death - confusing terminology may present an additional barrier
• The near impossibility of anticipating future wishes
• Conflict of values within a family
• Insufficient communication skills and conflict resolution skills by all members of the care team
• The advance care planning needs of the disability community and of those living with chronic long-term conditions can be different from the needs of persons receiving end-of-life care. Blanket legislation or generic resources and tools may not be responsive to these differences.
• Lack of systems to support advance care planning and health care providers' awareness of the advance directive when it is needed
• Absence of any means of knowing the incapable patient's wishes
• Difficulties in getting the care desired regardless of the patient's wishes, because of scarce resources in the health care system. This can be especially difficult in home care.
• Generational (elder) reluctance to talk about death or lack of a sense of entitlement to express personal wishes about care
• Consumers sometimes give up on advance care planning if they cannot find user-friendly, affordable help and resources
• A lack of research and evaluation hampers work in the field of advance care planning.

Options for further work

The Public Information and Awareness Working Group requested that this report identify options for further work that the Working Group might consider. The following 14 options are based on the research done for the report.

In many cases, these options are closely aligned with the short-term options and long-term possibilities that were identified by participants at the March 2006 Advance Care Planning Forum.

• [Where this occurs, the options identified at the March 2006 Forum are indicated in bulleted paragraphs within brackets.]

Options:

1. Facilitate the exchange of knowledge and expertise that exists in pockets across Canada through meetings or information resources (this links to options 2 and 6 below).
2. Identify best practices (factors for success) and disseminate the findings. This could be a subject for collaboration with the Best Practices and Quality Care Working Group.
   • [Literature review of best practices; Get all the good work on ACP to frontline health care workers; To know and share best practices.]
3. Collaborate with the Best Practices and Quality Care Working Group to ensure that accreditation standards and guidelines of health care facilities and hospices continue to include advance care planning.
4. Dialogue with national associations representing the professions involved in health care and those representing the hospital and long-term care sectors (e.g. Canadian Healthcare Association and the Canadian Association for Community Care) to discuss ways of ensuring that all staff become aware of advance directives at every stage of the continuum of care. There may be a possibility for collaboration with the Best Practices and Quality Care Working Group.
   • [Research on why health care professionals are not getting the proper consent from patients; Find ways to ensure that the expressed wishes of people are honoured.]
5. Support disease-specific organizations to develop advance care planning resources tailored to the specific needs of their clients.
6. Create a clearinghouse for advance care planning information coupled with a user-friendly website and resources for consumers and professionals. This could include a plain-language guide to the differences among provinces in their practices (including legislation) and use of terms.
   • [Plain-language document on differences among provinces in their use of terms and in their practices; Clearinghouse of information for all professionals; Inventory of discussion tools and ways of helping people; Find a way to leverage the transfer of knowledge]
7. Develop educational modules, focusing on interdisciplinary education for professionals. Tap the expertise of those with experience, such as social workers and other health care providers in renal care. This could involve collaboration with the Working Group on Education for Formal Caregivers.
   • [Educational modules for each profession on consent, which includes advance care planning; Inter-professional and interdisciplinary education modules; Education in communication skills; Help non-palliative care physicians learn to share power in decision-making; Train medical students to share power; Moving away from the medical model towards integration of various disciplines with the patient at the centre]
8. Work with the legal profession to develop education and training programs. Because legal and ethical (both bioethics and legal ethics) principles underlie and inform advance directives and health care consent as well as interrelated capacity issues, include the legal profession in the development of interdisciplinary educational modules described in option 7.
9. Work with national stakeholder organizations representing the long-term care sector to do further study of Levels of Care forms and the need to engage in true advance care planning.
   • [Need to clarify the purpose of levels of care as guidelines rather than consents, orders or true advance directives.]
10. Support research and evaluation initiatives in advance care planning.
    • [Research on why it is so hard for professionals in the system and for the systems themselves to do advance care planning well.]
11. Develop and/or support a national public awareness campaign about advance care planning
    • [National social marketing campaign like Participaction, anti-smoking, etc.; Public awareness for patients and proxies, including awareness of their rights; People would realize that they have rights and responsibilities and would know what they are]
12. Develop and/or support a national awareness campaign for professionals. The Canadian Nurses Association indicated in an interview for this report that it would be willing to assist by getting nurses involved through its 33 nursing interest groups. Their individual newsletters can raise awareness among nurses by covering advance care planning topics and soliciting feedback from members which could be incorporated into broader awareness-raising initiatives.
13. Support the development of advance care planning in paediatric end-of-life care by connecting with working groups working on paediatric palliative care issues.
    • [A collaborative process in the best interests of the child in a family-centered approach]
14. Facilitate dialogue among the health, social, legal sectors and consumers, including those involved in developing provincial legislation and policy.