New research initiatives in Canada for end-of-life and palliative care

Almost 2000 years after the Roman philosopher Seneca told us that “the wise man will live as long as he ought, not as long as he can,” the Canadian Senate Subcommittee's report on palliative care has stated that quality end-of-life care is the right of every Canadian.1 Despite this laudable notion, there is a paucity of data to help determine what constitutes quality care at the end of life, particularly from the perspectives of patients with life-threatening illnesses and their family members. In addition, we lack performance indicators to determine whether the estimated $3 billion spent annually on dying patients is optimally allocated. In response to the research void, the Institute of Cancer Research recently announced that end-of-life and palliative care was its top strategic research theme.

Although we welcome this initiative because it will further strengthen palliative care of cancer patients, we must remember that most people in Canada die of other causes. In a study involving patients with advanced chronic obstructive pulmonary disease (COPD) and those with lung cancer, the COPD patients reported deficiencies in quality of life, symptom control and access to palliative care that exceeded the deficiencies experienced by the patients with lung cancer.2 This study and others have shown that, for patients with advanced lung and heart disease, we fail to address their needs to discuss satisfactorily treatment options, prognosis, advance directives, symptom relief, and use and nonuse of mechanical ventilation, their wishes to know what dying might be like or their fears of what they are facing.2^,3^,4^,5^,6^,7^,8 Given that COPD and congestive heart failure are responsible for the majority of admissions for acute hospital care, we are failing to provide effective and coordinated palliative and end-of-life care for large numbers of patients. Moreover, there is evidence that we engage in emergency life-prolonging interventions more often for these patients than for cancer patients with a similar life expectancy.9

Historically, research into palliative and end-of-life care has been conducted in large part by researchers working in relative isolation, with a focus mostly on patients with cancer. Recently, through a grant from the Canadian Institutes of Health Research (CIHR), leading researchers in end-of-life care from a broad range of disciplines (health law, sociology, anthropology, health economics, clinical epidemiology, psychology and the more traditional health professions, including nursing, pharmacology and several medical specialties) met to assess research into palliative and end-of-life care in Canada.

The following areas of research were identified. First, we need a better understanding of why, when, where, how and with what effect do providers (e.g., intensivists, respirologists, cardiologists, general internists, palliative care physicians, nurses and social workers) speak to dying patients and their families regarding prognosis, treatments and other issues related to end-of-life care. We also need to examine ways of improving communication and decision-making. Second, we need to examine how dying patients and their families assess their quality of life, symptoms, burden on caregivers, preferences and satisfaction with care in the final months to weeks of life and to look at treatments that improve quality of life and symptoms. Third, we need a better understanding of the features of patients' diseases (e.g., biological, clinical, functional, comorbid) that affect prognosis, symptoms and quality of life. Finally, we need to examine more closely the issues related to ethics, policy and health services utilization that impede or encourage appropriate high-quality end-of-life care.

Given the complexity of issues related to quality of life, quantity of life, and the trade-off between them in a system that is in large part designed to treat acute illnesses, a multidisciplinary team approach to the conceptualization, implementation and interpretation of end-of-life research is vital. In the future, we envision multidisciplinary research teams exploring end-of-life issues in all life-limiting diseases and populations to improve our understanding of, and ability to achieve, excellent quality care at the end of life for all Canadians. We look forward to further funding initiatives in this field to be announced by CIHR (www.cihr.ca). We can build on the success of other research groups and learn from experts from other networks, such as the National Cancer Institute Clinical Trials Group and the Canadian Critical Care Trials Group.10 We are looking for partnerships and invite all researchers in end-of-life and palliative care to contact us by email (gmrocker{at}dal.ca and dkh2{at}post.queensu.ca) if they would like to be part of this new endeavour and to participate in a protocol development meeting later this year.