Stumbling Toward Death
By Jim Oldfield
How do Canadians die? Often not how or where they want.
Most of us would prefer to die at home, but almost two-thirds of us will die in a hospital. Only one in six Canadians receive formal palliative support, and often just in the final weeks of life. Most seniors admitted to hospitals would prefer less aggressive treatment than they receive, yet up to 15 per cent will die in intensive care, subject to the most invasive interventions medicine can offer.
It doesn’t have to be this way. The Economist ranked Canada below most peer nations in its 2015 Quality of Death Index, even though higher-performing countries like the United Kingdom, Australia and New Zealand spend less per capita on health care. And a recent JAMAstudy of cancer deaths found Canada has the highest rate of hospitalization and hospital expenditures in the last six months of life among seven developed nations. The number of Canadian seniors continues to rise rapidly, pressuring palliative services and provincial budgets and placing ever more demands on family caregivers.
“It’s a chronic crisis,” says Robert Fowler (PGME ’99 Internal Medicine), a professor of Medicine at the University of Toronto and critical care physician-researcher at Sunnybrook Health Sciences Centre. “We’ve been in a slow boil for so long, with too few out-of-hospital resources for end-of-life care, that dying in a hospital has almost become normalized in Canada. Yet that’s not an option most people would choose.”
But a new way forward is emerging. Slowly, we’re creating better access to higher quality palliative care; we’re refining critical care and teaching end-of-life care in medical education — and we’re talking more openly with patients and families, helping them plan for death. A growing number of Canadians are longing for these changes, with many leading the way on medical assistance in dying and pushing against long-held taboos on discussions of death.
Medicine is remarkably good at extending life, but reluctant to normalize death and dying. Are we really willing to change?
How We Got Here
Throughout history, most people died without medical care, surrounded by family, friends and religious figures. Death was often painful and fairly sudden but tempered by community supports and written guides on the “art” of dying such as the medieval Ars moriendi. Similar conditions persisted into the early 20th century in North America, where most people died at home.
The circumstances of dying changed radically with the rise of modern medicine, which vanquished many infectious diseases and turned common killers into treatable conditions. Life expectancy in Canada grew by 22 years between 1922 and 2011, and death became a slow fade for most people, punctuated by multiple visits to the hospital.
But the medicalization of death sapped the humanity from the end of life. Hospital care at the end has often meant a lonely death with few psychosocial supports, after sometimes futile and painful treatments. As the surgeon and writer Atul Gawande put it in his 2012 book, Being Mortal: “In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality and created a new difficulty for mankind: how to die.”
Uncomfortable Conversations
One way to exert some control over how we die is through advance care planning.
Research has shown that communicating care preferences makes for a better death. Studies show it reduces the risk of hospitalization and unwanted treatments, and lowers health-care costs considerably. It also greatly reduces anxiety and depression among family members before and after a loved one passes away.
But only about half of Canadians say they have discussed their wishes with a substitute decision-maker, and far fewer have spoken with their health-care providers.
Patients are often averse to discussing death, but so are many physicians: a 2014 survey by Ipsos Reid for the Canadian Hospice Palliative Care Association found that only one-quarter of Canadian primary care doctors felt experienced and comfortable talking with their patients about planning for end-of-life care.
“We should all do advance care planning from a young age,” says Samir Sinha (PGME ’08 Internal Medicine), an associate professor of Medicine and also Family and Community Medicine at U of T. “I make discussions about it a regular part of my geriatric practice, and I’ve found that when I take the time to have those conversations, most patients and their families actually welcome them.”
But he stresses that effective planning is an ongoing process. “As people approach the end of life, their perspectives on what kind of care they want often change — they become more willing to trade quality of life for more time,” says Sinha, who is also director of Geriatrics at Sinai Health System and University Health Network. That shift can complicate care; so can changes in caregivers and in a patient’s capacity to consent.
A national campaign called Speak Up launched in 2013 to address those complexities and encourage practitioners to have advance care discussions. At the same time, the Ontario Medical Association spent a year raising public awareness on communicating end-of-life wishes. Such efforts may be starting to work: a Commonwealth Fund survey of Canadian seniors in 2017 showed modest increases in advance care communications, and a recent pilot with 9,000 people in the Waterloo area convinced three-quarters of them to share their care preferences with loved ones.
We Were Awestruck
Patients who have not shared their end-of-life wishes are much more likely to end up in critical care — a field at the frontier of medical advances that sustain life, but one that can profoundly degrade the quality of our final days and cause family members intense distress.
“When we came into existence as a field, I think we were awestruck about what we could achieve, and many moments are still like that,” says Laura Hawryluck (MSc ’99), an associate professor of Medicine at U of T and the critical care response team lead at UHN’s Toronto Western Hospital. “But eventually we realized that when people came out the other side of that care, they were sometimes so deeply altered that we were giving them lives they didn’t want to live.”
Once they got that message, says Hawryluck, many critical care physicians began to think differently of life support near the end of life: less about how patients want to die, and more about how they want to live.
That shift has led to more nuanced talks among practitioners, patients and families about what results are achievable and desirable. Those conversations can span days or months, while patients come to grips with evolving prognoses — if they are conscious and cognizant — and family members are at various stages of acceptance. Stress and emotions run high, and are worsened when patients cannot give consent and haven’t made their wishes clear through advance planning.
“It takes a lot of skill and judgement on our end to have these conversations, to meet the information and emotional needs of everyone involved,” says Hawryluck. “And they are hard to teach in medical school, when students are focused on learning to cure or stabilize illness and haven’t experienced patient death.” She says schools could do that teaching better, but that many faculty are becoming conscious of taking certain approaches, and of mentoring that learning with trainees.
Conversations that do not reach agreement can lead to legal challenges, many of which hit the news, but those cases are rare. Much more frequently, patients are kept on life support while families debate next steps or decide “to do everything” because they cannot settle on a different course of action.
This common scenario has spurred questions about the cost of critical care at the end of life. Studies have put health-care costs during the last year of life at about 20 per cent of health expenditures in Canada, with up to half of that total in aggressive diagnostics, monitoring and critical care. The average cost of a daily stay in a Canadian intensive care unit is about $3,600 — more than three times the cost of a general ward hospital stay.
But some caution against assumptions that there are obvious ways to reduce costs. “It’s a slippery slope to say, ‘He’s got cancer and will die in three months, he might as well go now,’ ” says Andrew Baker (MD ’85, PGME ’89 Anesthesia) a professor of Anesthesia and Surgery at U of T and chief of critical care at St. Michael’s Hospital. “I think there is an inherent value in life, and this isn’t necessarily about religion.”
Baker also says critical care has matured. “I see some really great advances in terms of patient-centred care,” he says. “Critical care used to be on or off, all lines and tubes or nothing, but care is graduated now. We provide palliative care and supports for families, and I think that if one does die in a high-tech hospital like this, the critical care unit can provide an excellent experience.”
But Baker and almost all critical care practitioners agree that patients need more options at the end of life — and better access to palliative care.
That’s Not Quality of Life
In Canada, the term “palliative care” includes end-of-life supports in long-term care homes and residential hospices, visiting or in-home hospice services, and inpatient or outpatient palliative medicine delivered in hospitals. Demand for all these services far exceeds supply, although the gulf is shrinking.
By some estimates, only about 15 per cent of Canadians receive some form of palliative care, although other estimates show Ontario faring better. Still, Statistics Canada shows a small but steady decline in the number of Canadians dying in hospitals in the past few years.
The number of hospices in Ontario has grown in the last decade, from four to 47, although Hospice Palliative Care Ontario estimates capacity is still short by a third. The province has agreed to fund more beds, spurred in part by a recent auditor general report that found the quality of residential hospice care to be high, and one-third the cost of hospital care.
Consider the experience of Dianne Byrne and her partner, Patricia Dienstmann.
Dienstmann, a flight attendant and real estate agent, was just 42 when she was diagnosed with an aggressive brain cancer in 2010. Byrne speaks well of Dienstmann’s surgeon, but doesn’t recall any palliative support from the oncologist or other care providers at their downtown Toronto hospital until three months before Dienstmann’s death — at which point she found a social worker’s suggestion of residential hospice sudden and jarring.
She toured a hospice and hospital palliative care units in Toronto and found them depressing.
Dienstmann’s care after surgery had included radiation, chemotherapy, steroids and an experimental drug that did not work but damaged her liver. When she began to have seizures and falls, and trouble communicating, she was readmitted to the hospital. Byrne recalls intense frustration with the hospital’s curative approach to care. “You’re lying there with bed sores, dying, and you’re denied a bloody glass of wine with the love of your life,” she says. “Come on. That’s not quality of life.”
Fortunately, Kensington Hospice had opened a few months earlier and a bed came free. Kensington offered an attractive and personalized space, a welcoming team of nurses, social and spiritual workers, and a dog named Douglas. Byrne and other family could spend the night, and Dienstmann got regular baths and food she loved — in addition to effective pain and symptom control. “It was like the angels arrived. The care was incredible from beginning to end,” says Byrne.
In This Together
Medical educators are encouraging health professionals to include palliative care earlier in a patient’s experience. At U of T, Continuing Professional Development offers a palliative care eLearning program, which has been fully subscribed since it launched in 2004. The university also works with UHN to run an annual conference for doctors, nurses and others who do not specialize in palliative care.
“The characteristics of a patient who may benefit from palliative care are not always obvious to health-care providers, so we try to demystify the field,” says Andrea Weiss (PGME ’12 Family Medicine), an assistant professor of Family and Community Medicine at U of T, who directs the conference. “And we teach symptom control but also psychosocial supports, which broaden the net of care.” Weiss, who is also a palliative care physician at UHN, says health professionals are now integrating palliative care for patients with conditions other than cancer.
It was like the angels arrived. The care was incredible from beginning to end.
Also encouraging is that research on end-of-life care is starting to bear fruit — another sign that medicine is growing more comfortable with a field many health professionals once overlooked, says Gary Rodin, a professor of Psychiatry at U of T and director of the Global Institute of Psychosocial, Palliative and End-of-Life Care.
Rodin and his colleagues offer a program called Managing Cancer and Living Meaningfully (CALM), which helps patients address the challenges of metastatic and advanced cancer. They recently published the results of a clinical trial that found patients in the program experienced significant relief from depression and death-related distress, and were much better prepared for the end of life. “Each life is unique, but research has shown that people face a fairly standard set of problems with a terminal diagnosis,” says Rodin. “Their emotional and spiritual concerns are universal, and we can address them to improve quality of life and death.”
Rodin is now working with colleagues to introduce CALM in 20 nations, and to launch trials in five European countries. He says people often ask if he finds his work depressing. “It’s actually very rewarding, and it involves questions we all face,” he says. “We should think about what we are doing with our lives, our purpose. Even 20-year-olds don’t have much time left, they just don’t know it yet.”
Rodin has engaged with the psychology of death for more than two decades, but across medicine and even within palliative care, the move beyond symptom management to psychosocial support is slow — or pending. “Not all palliative care is top notch, and the problem is often communication around the emotional aspects of dying,” says U of T’s Mary Vachon (MA ’74), an adjunct professor of Psychiatry and at the Dalla Lana School of Public Health, who has studied death for five decades.
Vachon says good palliative care requires empathy and compassion, and that more physicians need to show an understanding of how patients feel at the end of life, to create a sense that “we’re in this together.” She says many doctors struggle with the vulnerability that facing mortality can bring, but she is encouraged by recent research on ways practitioners can avoid empathic distress — and by the care she saw young staff deliver when she was hospitalized recently.
“When you have all kinds of technology, you of course want to use it. But there are advantages in simply being present,” says Vachon. And being present need not take hours or days, or even open conversations about terminal illness. “Little moments matter,” she says. “Making eye contact, asking for permission to touch. It’s a recognition that there’s a person here.
Does that take time? Not really.”
