End-of-life care in Canada

[Three of the authors respond:]

Katharina Manassis seems to take exception to our call1 for more research in the area of end-of-life care, suggesting that “more education, more practical solutions and more compassion” are what are required to fix the problem. Although this is true, we believe it is not sufficient. Most of the patients we serve at the end of life (and their families) are very dissatisfied with the care they receive.2 Overall, we do agree that more educational and clinical resources need to be applied to caring for patients with terminal and chronic diseases. In this regard, we are pleased that Associated Medical Services of Ontario has stepped forward to fund fellowships in end-of-life care in Ontario teaching hospitals.3 The fellows will endeavour to promote excellent care of the terminally ill, quality improvement initiatives and curriculum developments that will ultimately translate into improved care for these patients.

However, as a discipline, palliative and end-of-life care, relative to other medical disciplines, stands on a weak evidentiary basis informing us about best practice and how it is optimally achieved in various circumstances. We think it is misguided to assume that we now have all the solutions to quality-of-care problems in our heath care system. Accordingly, the Canadian Institutes of Health Research (CIHR) has allocated over $14 million to establish end-of-life research teams across the country and has recently dedicated a specific committee to review all grants in this area.4 These positive developments increase the likelihood that future educational and clinical interventions will be supported by substantial research evidence.

We agree with Christine Simmons and Mark Clemons that communication and decision-making at the end of life are best viewed as a process, not an event, which requires frequent reassessments. Unfortunately, our fragmented, discontiguous health care system makes this kind of care challenging. We hope that future research by the Canadian Researchers End-of-Life Network and other CIHR-funded teams will illuminate the strategies needed to optimize communication and decision-making for dying patients and their families.