DEVELOPMENT OF PRIORITIES FOR ADVANCE CARE PLANNING AND END-OF-LIFE CARE IN CANADA

Purpose: This pilot project used a method derived from decision theory to help develop a prioritized research agenda for advance care planning (ACP) and end-of-life (EOL) care through involvement of key decision-makers, practitioners and researchers from the Canadian Hospice Palliative Care Association and the Canadian Researchers at the End of Life Network.  

Method: We followed three main steps in the process, based on multi-attribute utility theory: (1) deciding upon a set of criteria by reviewing the literature and conducting stakeholder interviews and focus groups; (2) assigning “importance” weights to the different criteria through a “criterion” survey to reflect the subjective judgement: respondents rated the importance of each criterion from step 1 by choosing a number on a 10-point scale ranging from 0 (“not at all important”) to 9 (“the most important”) that best reflected the importance of each of the criteria ; and (3) developing a list of comprehensive ACP/EOL care topics through focus groups.  

Result: From step 1, nine main criteria (with sub-criteria) were created: (i) feasibility – a. funding, b. research, c. implementation; (i) consistency with ethical and societal values – a. ethics, b. societal and cultural norms; (iii) economic considerations; and (iv) impact – a. quality of care, b. ACP implementation, c. process of care.  In step 2, responses to the criterion survey were collected from 22 participants (years of experience: 1-32 years; expertise: law, policy, long-term care, knowledge transfer, education, physician, program development, implementation and evaluation).  Mean scores on the items were generally high, ranging from a low of 4.95 to (“somewhat important”) for funding feasibility to a high of 8.45 (“very important”) for impact on quality of care.  Finally, in step 3, a list of 17 comprehensive ACP/EOL care topics were developed.  The topics were categorized as those relating to a) patients and family members; b) general public; c) professionals; and d) system issues.  

Conclusion: This study identified criteria and topics important for prioritizing EOL care, thereby helping stakeholders understand their potential role in addressing EOL issues and developing initial priorities for EOL activities.  This can help stakeholders organize thought processes by considering all important factors in a systematic and comprehensive fashion.  Scores can provide concise summaries of the “values” which in turn can guide in the establishment of a prioritized agenda.