New tool provides customized reports to support end of life care preferences

A Kingston physician and researcher has created a new online tool to help facilitate and improve communications between patients, caregivers and health-care professionals at a patient’s end of life. The CANHELP questionnaire, designed by Kingston General Hospital physician and Queen’s University researcher Dr. Daren Heyland, provides an opportunity for patients and caregivers to determine what is important to them at the end of life, and to rate their current satisfaction with various aspects of their care. The CANHELP tool was initially developed as part of a national study to measure satisfaction with end of life care from the perspectives of patients and their caregivers. The study, which included 471 patients and 255 family members in six centres across Canada, concluded that patients and caregivers were not necessarily getting the end of life care that they want. Respondents in the study identified a number of priorities at the end of life, including being treated with dignity by doctors and nurses, and being treated by a health-care team that worked collaboratively to provide compassionate and supportive care. Dr. Heyland’s research, which was recently published in Palliative Medicine, focused on validating the CANHELP tool for use by patients and caregivers in hospitals across Canada and around the world. It can be accessed online at the Canadian Researchers at the End of Life Network (CARENET) website at The questionnaire is unique in that it measures both what is important to each individual at the end of life and how satisfied they are with that aspect of care. When the questionnaire is completed, a report is produced that provides suggestions for improving care and guidance for communicating with members of the health-care team. The CANHELP tool is also a valuable tool for health professionals as a catalyst for discussions about treatment, to identify opportunities for improvement, and to measure quality of care delivered by a program or institution. Dr. Heyland notes that while every Canadian has their own preferences for end of life care, all Canadians have the right to a quality end of life experience. “Our research goal was to develop a tool that patients and caregivers can use to get the care they want – and deserve. We believe that CANHELP gives them some control over that care.”