Dr. James Downar is a palliative care and intensive care physician at UHN. (Photo: Dr. James Downar)
While he was still in medical school, Dr. James Downar was asked which specialties he would most like to pursue.
"The only thing I wrote down was, ‘Not palliative care!’” he remembers. He wanted to cure people, not watch them die.
Today, Dr. Downar is a palliative care and intensive care physician at UHN. He explains that as people strive for a good life, they should also consider what a “good death” means to them. Death - one of the last taboos - needs to come out of the closet, he says. We all need to start talking about it – patients, families and caregivers - and listening to what our patients are telling us.
In an interview with UHN News, Dr. Downar takes on some of the myths around death and end-of-life care.
Myth 1: Aggressive treatments are likely to cure illness and we should try them at all costs.
The majority of North Americans will die of chronic illnesses such as cardiovascular disease, cancer, chronic lung diseases, dementia or a combination of these illnesses. We can manage these illnesses for a long time but, despite our best efforts, they often progress. When people face these and other advanced incurable illnesses, aggressive treatments often have little role to play. Although physicians may be able to reverse acute episodes in the illness or sustain life for some time, they can’t fix the underlying condition or help the patient get back to a good state of health, a state without life support, or one without debilitating side effects from the treatments.
In these situations, people have the impression that choosing less aggressive treatments is not a good option, and that doing so will shorten life. In fact, some studies have shown that in advanced, incurable illnesses, less aggressive treatments are linked to a higher quality of life and longer survival. A study from 2007, which looked at more than 4,000 heart failure patients, found that patients who received hospice services lived, on average, 29 days longer than those who did not receive this care. These patients prioritized quality of life over quantity of life, but they ended up getting both.
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Myth 2: Palliative care means giving up; it’s a death sentence.
The focus of acute medical care is to extend life, even if sometimes we may have to make patients uncomfortable to achieve that goal. It’s the default pathway in medicine. We provide aggressive treatment to fix things. But we need to be equally comfortable with the idea of improving care by not trying to ‘cure’ some problems, such as pneumonia in a person with a terminal illness.
In palliative care, we try to focus on values and needs and what patients think is important right at this point in time. We usually don’t recommend aggressive treatments for people with terminal illnesses, because these treatments can cause pain and suffering, and they are very unlikely to work. But avoiding aggressive care is not the same thing as giving up, and it is certainly not a ‘death sentence.’ One study reported in the New England Journal of Medicine found that among patients with non-small-cell lung cancer, those who received palliative care lived almost two months longer than those who received standard care. The group of patients receiving palliative care also had a better quality of life and fewer symptoms of depression. Equally important, this study also showed that more patients with palliative care had their resuscitation preferences documented in their charts, ensuring that their end-of-life care wishes were known and respected.
The lesson from these studies is that you can focus on quality of care and also get quantity of life, but if you focus on quantity alone – trying to prolong life – you can lose both quantity and quality of life.
Myth 3: In this age of modern medicine with so many options, we don’t need to talk about a medically-assisted death.
Death in Canada is usually a predictable event preceded by a chronic, incurable illness. Given the choice, many people try to delay death and some will seek out aggressive means of prolonging life even when faced with a hopeless situation.
Other patients have limited life-prolonging options, and although they remain cognitively intact, their quality of life and function deteriorate below the threshold that they consider acceptable. These patients usually choose comfort-based palliative care and are happy to wait for a natural death.
Some patients may prefer not to wait for a complication to end their suffering. Several recent high-profile cases of Canadians with brain cancer, Alzheimer’s disease, and Amyotrophic Lateral Sclerosis have illustrated this. In these events, the patient is comfortable with the idea that they might be foregoing some period of life in the interest of comfort. They will not avoid death, they might even seek it out, and they and their families will feel a degree of relief when it arrives.
It is important to realize that for these patients who want to choose the circumstances of their death, their suffering may go beyond physical symptoms, and can relate to issues of dignity, autonomy, and their ability to control the conditions of their death.
As a society, we need to come to terms with how we are going to help those rare patients whose suffering cannot be relieved by even the best palliative care, or who feel that their illness entails a loss of dignity that is intolerable for them. It is a small number, but it does hit home when that person is a colleague, friend or family member.
Myth #4: Once you legalize medically–assisted dying, palliative care will suffer and the vulnerable will be put at risk.
Common arguments used against legalization of medically-assisted death relate to concerns about the effects on vulnerable people and the availability of palliative care services. Neither of these concerns is supported by data.
Data from the United States show that among patients who receive medically-assisted death, more than 90 per cent are white, high school graduates who have some form of health insurance. Data from Switzerland show that the wealthier and better-educated citizens are more than twice as likely to receive an assisted death as the poorer and less educated, while institutionalized people are less likely to receive an assisted death than those living in a private residence. The people who receive an assisted death are not the vulnerable - they are the privileged.
Palliative care services appear to have done well in jurisdictions that legalized medically-assisted death. Legalization of medically-assisted death is often accompanied by a larger strategy and funding to improve end-of-life services, as described in studies from the Netherlands. In the United States, the three states that have legalized medically-assisted death by statute (Vermont, Oregon, and Washington) are ranked first, sixth, and eighth in the nation, respectively, for the availability of palliative care services in hospitals. In 2010, The Economist ranked the “basic end-of-life health-care environment” of 40 nations around the globe. Countries in which medically-assisted death is legal (Switzerland, Netherlands, Belgium, Luxembourg, and the United States) ranked first, fourth, fifth, seventh, and ninth, respectively. Canada ranked 20th.
Legalization of assisted death does not result in or result from poor palliative care, because palliative care and assisted death are not competing options. The debate should revolve around choices available to patients.
Myth #5:
Most people are grateful to die in a hospital where they can be cared for adequately.
Surveys have told us that the overwhelming majority of people -- cancer patients included -- do not want to die in a hospital, and do not want to be receiving life-sustaining therapies at the time of death. Yet more than half of all deaths in Canada occur in a hospital, and 15 per cent occur in an intensive care unit. This discordance affects patients and families alike in a negative way. A 2014 study of caregivers evaluating the dying experience showed that home deaths were linked to better symptom control, preparation for death and overall quality of death.
Patients and family members indicate that the process of communication and end-of-life decision-making with health-care professionals needs improvement. To help patients achieve a 'good death,' we will have to recognize that death is no longer a taboo subject, and start talking about end-of-life care with patients and families before they become ill. We know that virtually every Canadian has thought about the type of care and support they would like as they near the end of their lives. But we need to make sure that these thoughts and values are communicated to family members and the health-care team, so that they can be used to inform the care that we provide.
