The Role of Informal Caregivers in Palliative and End-of-Life Care in Canada: A Discussion of the Legal, Ethical and Moral Challenges (VOICE in Health Policy Demonstration Project)

THE ROLE OF INFORMAL CAREGIVERS IN PALLIATIVE AND END-OF-LIFE CARE IN CANADA:
A DISCUSSION OF THE LEGAL, ETHICAL
AND MORAL CHALLENGES
(VOICE in Health Policy Demonstration Project)

This Voice In Health Policy Project provided – for the first time in Canada – a critical assessment of the legal, ethical and moral challenges faced by informal caregivers (family, friends and loved-ones) at the end of life – particularly as they relate to new health care reforms and initiatives, such as the Compassionate Leave Benefit.

This multi-phase project included the following activities and outcomes:

A discussion document that outlines the critical legal, ethical and moral issues;
A consultation, using the discussion document, aimed at determining how the role of the informal caregiver has changed in the last five years; and,
A major stakeholder meeting, which provided a forum for experts to discuss the scope of problems for informal caregivers, the actions that can be taken, who needs to be engaged in this policy discussion, and how to disseminate the fore-going information to make the biggest impact; and the development of a strategy for future action.

VOICE in Health Policy
The VOICE in Health Policy Project is a three-year initiative funded through the Sectoral Involvement in Departmental Policy Development (SIDPD) component of the Government of Canada’s Voluntary Sector Initiative (VSI), launched in 2000 and hosted by the Canadian Public Health Association (CPHA). The Project has two key objectives:

To increase the policy capacity of voluntary organizations working in health
To enhance individual and collective collaboration by voluntary organizations working in health in Health Canada’s policy development process

This project was national in nature. Twenty-five key informant interviews were completed with participants from across Canada. The key stakeholder forum included participants from most of Canada however the North of 60 was missing from the dialogue at that meeting. The literature review was both national and international in scope. The scope of this project found that fundamentally the same policy issues exist across Canada.

The Role of Informal Caregivers in Hospice Palliative and End-of-Life Care in Canada:
A Discussion of the Legal, Ethical and Moral Challenges

Transforming Policy: Strategic Policy Directions on the Role of
Informal Caregivers in Palliative and End-of-Life Care