In Search of a Good Death

Dr. Harvey Chochinov

Imagine you’re diagnosed with a terminal illness. If you’re like most Canadians, your first response is, "Do I really want to think about this?"

None of us like to ponder dying and its inevitability. Also, if you’re like most Canadians, you probably assume that when your time comes, good end-of-life care will somehow accompany you as a matter of due course.

But according to the report tabled last month by the Senate Social Affairs Subcommittee, Quality End-of-Life Care: The Right of Every Canadian, you’d better not count on it.

"In the five years since [the first Senate report] we have made little progress in the area of quality end-of-life care." Senator Sharon Carstairs, the Senate subcommittee chair, has said. Canadians are still dying in needless pain and without adequare palliative care."

Death itself seems indifferent to our lack of preparedness for its arrival. More than 220,000 Canadians die each year, 75 per cent of them in hospitals and long-term care facilities. But perhaps the most startling fact is that only an estimated 5 per cent will receive integrated, interdisciplinary palliative careC that is, care aimed at lessening physical, emotional, psychosocial, and spiritual suffering —rather than care that targets cure.

Since the Senate’s last report, the number of institutional palliative-care beds across the country has actually fallen as result of health-care restructuring. Few provinces have designated palliative care as a core service with a specific budget.

I'm a psychiatrist and end-of-life care researcher working in a Winnipeg palliative care unit. I am constantly in awe of my clinical colleagues and their incredible ability to alleviate pain and suffering in patients nearing death. I’ve often seen them sit at the bedside of someone in a pain crisis and not leave that patient’s side until the crisis has passed. For them, attending to the dying is not an occasional or reluctantly undertaken task, and their successful management of patients’ suffering is measured not in days of life endured, but rather quality of life lived. Their skill, knowledge and therapeutic effectiveness always leaves me feeling humbled. I know that suffering can often be diminished by appropriate care.

I recall one cancer patient, a woman in her 40s, who told us she wanted to die because of her unbearable pain. After our team managed to get her pain under control, she was able to live her last days at her family ranch, near her beloved horses. She told us about the intense joy of sitting on her back deck, drinking coffee and basking in sunlight. There are hundreds of similar stories; what’s terrifying is that the majority of them are not like this.

What’s the likelihood of getting this kind of expert care? How skilled are your health-care providers at managing symptoms of pain and discomfort? How aware are they of different therapeutic techniques, or of advances and multidisciplinary approaches?

According to the Senate report, there’s no consistency in whether undergraduate medical students receive any palliative care education whatsoever. Few postgraduate medical programs have made palliative care rotations mandatory and teaching is inconsistent. As for continuing medical education, there are some (largely underfunded) palliative-care programs, but the initiative to enroll in them is left to individual discretion. The Senate report urges that training and education of all professionals involved in end-of-life care should be made a priority.

Holes in the home-care safety net may force some terminally ill patients to check into hospital, where they may die in unfamiliar surroundings. We don’t make home care easy enough. If someone you love is dying, and you need to take time away from work, do you have any assurances that your income will be protected, or that your job will remain secure in your absence? While provincial health plans pay for selected aspects of home-based palliative care, these plans don't always include the cost of drugs and equipment, such as pumps for pain medication, oxygen, and commodes. To care for patients at home, you may need private insurance, personal savings, or contributions from social agencies and service clubs to cover costs.

Women, in particular, often shoulder the major portion of care, and make tremendous sacrifices to attend their dying parents, in-laws and siblings. But what we're asking of them is to be superhuman. We should support them by funding drug coverage, and professional and non-professional care services such as home nurses. Ottawa should offer income security and job protection for family members who care for the dying. We should have in place 24-hour pain-management teams and support for families, such as respite care and bereavement counselling.

Like every other area of medicine, developing good quality end-of-life care requires research and knowledge based on carefully conducted studies. Yet despite the fact that we all die, there’s a disturbing lack of research in Canada in this area, such as research into the effectiveness of medical and non-medical interventions and measures of appropriate, cost-effective, health-care services. We’ll need to fund more research on dying if we want to make the best, must cost-effective decisions about care for the dying. And for their families.

Not long ago I worked with a terminally ill man who had clinical depression: What was the point of living another day? After I treated his depression he was able to enjoy his remaining days with his wife of 50 years. Good palliative care benefits not only the patients, it has a ripple effect for those near to them.

Life is most vulnerable at its beginning and its ending. Sadly, the Senate report reads like an indictment of how little has been done to meet the needs of Canadians nearing death. Clearly, Ottawa and the provinces should act now to develop a national strategy for end-of-life care.

Yes, it may cost money, but as Senator Carstairs puts it, "As Canadians, we will afford what we value." We can’t afford to ignore end-of-life care: Some day each of us will need it.

Dr. Harvey Chochinov, a witness at the Senate Committee hearings in 1995 and again in 2000, is a Professor of Psychiatry and Family Medicine at the University of Manitoba, and a Soros Faculty Scholar, Project on Death in America. He chairs the research committee of the Canadian Palliative Care Association.

The June 2000 Senate Subcommittee Report QUALITY END-OF-LIFE CARE:  THE RIGHT OF EVERY CANADIAN  is available on-line at: