Avoiding invasive end-of-life care in cancer
Going gently when cure is elusive
Illustration: Jon Krause
It would seem that as a society we are uneasy about death. In a 2013 survey by Harris/Decima of nearly 3,000 Canadians, more than one-half had never discussed end-of-life care preferences with a family member, doctor, lawyer, friend or financial advisor. Respondents attributed their reticence to fear of death, not wanting to upset family members, discomfort in talking about death and lack of knowledge about options.
Furthermore, although most Canadians would prefer to die at home, more than 60% of all deaths in Canada occur in a hospital.
People who die in an acute care setting do not have adequate symptom control, communication with doctors and emotional support, notes Dr. Lisa Barbera, a senior scientist at Sunnybrook Research Institute (SRI) and radiation oncologist at Sunnybrook’s Odette Cancer Centre. She says hospitalization when someone is dying focuses on acute medical problems, whereas palliative care treats the whole person, not just the illness.
Palliative care, also known as supportive, or comfort care, aims to improve quality of life by relieving pain and other symptoms. It can be given at any stage of illness to anyone with a life-threatening disease. The approach integrates psychological and spiritual care, and provides caregiver support.
Barbera says knowing which health services people receive before death can indicate whether they are receiving appropriate care. In a study published in Current Oncology, Barbera looked at health services used by people approaching death owing to cancer in British Columbia, Alberta, Ontario and Nova Scotia. These services included palliative care, home care, emergency department (ED) use, admission to the intensive care unit (ICU) and death in hospital.
Across all four provinces, 54% of patients died in hospital, and 46% received supportive care such as home care nursing and personal support worker visits. She also found that ED use ranged from 31% in Nova Scotia to 48% in Ontario.
“We’re trying to understand what kinds of services cancer patients are receiving near the end of life to have an idea of where is there a problem, how big a problem and where there are opportunities for improvement,” says Barbera. She notes the holistic nature of palliative care is important in dying because it addresses physical and emotional needs.
One of the challenges in accessing supportive care is fragmentation of services, says Barbera. “Some areas are well-resourced and others aren’t. How do you make sure that the services are widely available, and that people are getting referred to them and making use of them?”
Part of the problem is not knowing how many palliative care doctors there are. Barbera notes most are family physicians. Using administrative data, she developed an algorithm to identify physicians in Ontario who provide this care. The method can be used to determine the number of palliative care doctors in Ontario, their distribution, how much work they are doing and the nature of their work. Policy-makers could then use this information to improve access to supportive services.
Misconceptions about the definition of palliative care are also a hindrance, as a study out of the University Health Network in Toronto suggests. People with cancer who were interviewed for the study equated the term with certain death, an impression they said was derived from their doctors and nurses.
Dr. Clare Atzema, a scientist at SRI and an emergency medicine physician at Sunnybrook, says she routinely sees people with terminal cancer waiting for hours in the ED, something she finds extremely regrettable.
Atzema says that these patients often come to the ED because their health is declining and their families don’t know what else to do. Unfortunately, the problem is beyond her scope. “The ER’s a great ‘quick-fix’ kind of place: you have pain, I’ll give you pain medicine; nausea, I’ll give you anti-nauseants. There is a lot that we do well, but something as big as a sense of poor well-being, that’s hard to fix in the ER,” she says.
In addition to enduring long wait times, people with cancer—whose immune systems are weak—are at risk of picking up an infectious disease in the ED. For these reasons, the ED is not the best option, says Atzema.
Increased uptake of palliative care, on the other hand, which provides pain relief and emotional support, would not only improve treatment, but also reduce costs. A study co-authored by SRI critical care researcher Dr. Robert Fowler shows that among seven developed countries, Canada has the highest average hospital expenses for a person with cancer in the last six months of life. Canada also has the highest proportion of people with cancer dying in hospital.
Dr. Matthew Cheung, a clinician-scientist at SRI, compared the cost of aggressive care with that of comfort care in the final month of life. Looking at records of people who died of cancer in Ontario between 2005 and 2009, Cheung found the cost of providing major medical interventions to dying patients was 43% higher than that of supportive care.
That finding was intuitive, he says. What surprised him was that early use of palliative care was associated with fewer life-prolonging measures such as admission to the ICU, ED visits and chemotherapy; and less expensive care in the final stages of illness. “If you invest in palliative care early on, it saves money down the road, but more importantly, it ends up refocusing the care to make patients more comfortable,” says Cheung.
He says the research provides a rationale for investment in supportive care. When asked why he thinks people with cancer are receiving active treatment near death, Cheung says that communication around end of life between doctors and patients is challenging and needs improvement, an issue he wants the research to highlight. “Part of my hope with this paper is it identifies that need to have these conversations to make sure that patients who are dying are dying with comfort and dignity.”
* Bekelman et al. JAMA. 2016;315(3):272–83.
** Cheung et al. Cancer. 2015;121(18):3307–15.
Barbera’s research was supported by the Canadian Cancer Society Research Institute and the Canadian Centre for Applied Research in Cancer Control. Cheung’s research was supported by the National Institutes of Health and the Ontario Institute for Cancer Research.
