It’s time to talk about death and dying more openly and ask ourselves: What is a good death?
Many people avoid the topic because thinking about anything but a cure for illness can feel like “giving up.” Ninety per cent of Canadians die from commonly occurring, life-limiting illnesses such as cancer and heart disease. We know these illnesses shorten life, but it can be uncomfortable to think about what they will look like in their advanced stages.
Patients often think that getting palliative care is the same as end-of-life care and will lose hope and react negatively if it’s brought up as an option. This is not true. Getting palliative care increases a patient’s quality of life (and in some cases length of life).
That’s why Canadians need universal and equitable access to high-quality palliative care.
I felt helpless navigating the health-care system with my dying grandmother. That experience motivated me to become a registered nurse and health researcher with the goal of making death a better experience for other people.
My research measures the performance of end-of-life care delivered across health-care organizations and investigates the impact of providing palliative care earlier – ideally near diagnosis of advanced illness.
You might think palliative care is only for cancer patients, only at the end of life, and only when treatments have been unsuccessful or stopped. None of this is true. Palliative care is devoted entirely to preventing and relieving health-related suffering for people with advanced illness. Palliative care is in desperate need of rebranding.
End-of-life care is part of palliative care but it now has a much broader scope.
End-of-life care is part of palliative care but it now has a much broader scope: it’s focused on providing pain and symptom management, illness understanding and advance-care planning that is holistic and in line with a person’s values. It is delivered collaboratively by different health-care providers and offered at any time during illness – from diagnosis to death or survivorship – and at the same time as treatment.
Timely access to specialized providers is needed across the health-care system. Currently, fewer than 50 per cent of dying Canadians receive specialist palliative care in their last months of life. There are four crucial steps we can take to help make that happen:
- Removing the stigma surrounding palliative care by talking about its benefits.
- Addressing workforce shortages in nursing, medicine, social work and spiritual care to ensure there are enough providers to serve our communities.
- Exploring new ways of delivering palliative care such as through virtual visits or expanding the scope of practice of all types of health-care providers.
- Conducting more research and using analytical tools to gain insights into emerging practice patterns so that we can continuously improve care.
My grandmother died during a different era of health care. At that time, it was assumed that the more interventions given in pursuit of a cure, the better. Seeking a cure at all costs was the focus of care – even if that meant lots of tests, lost time in medical waiting rooms and many treatment side effects. No one talked about her end-of-life wishes; no one focused on how to make her life better while she lived with cancer. As a result, she received aggressive end-of-life care that caused her more harm than good.
Modern-day palliative care is a game-changer. Palliative care doesn’t shorten life, and it doesn’t mean that patients need to stop focusing on living. Far from losing hope, people often have better mental health because their symptoms are controlled. They’ve had the hard conversations weighing treatment options against risks and benefits and are encouraged to regularly revisit their priorities for care.
I consider a “good death” to be one in which patients receive early palliative care and supportive end-of-life care. Supportive care means having palliative care delivered by a health-care provider in a person’s home, not in a hospital. To be more responsive to patient needs increases satisfaction with care and decreases hospital use.
We need to talk about living with illness to get death right.