“There is a huge misconception that palliative care means death. Palliative care is actually about living well,” says Dr. Nadine Persaud, executive director of Kensington Hospice in Toronto.
For Boni Levie, 59, from Brooks, Alberta, living well means still being able to paint.
Levie was diagnosed with metastatic breast cancer two years ago. Before receiving palliative care, Levie would drive 106 kilometres to Medicine Hat or 190 kilometres to Calgary to have a catheter in her lung drained once a week. Now, with palliative care, a health care worker comes to her home and drains it there.
“I like to plan one thing every day to make me feel better about my life. Not having to travel to do the draining means I get to go paint at a studio close to my home. That is part of my palliative care,” says Levie. “Without the draining, I would have no energy to do that. That’s the difference between engaging in life via palliative care and not engaging in life with this metastatic diagnosis, which is stage 4.”
As Levie’s experience shows, palliative care can be transformative for people with a life-limiting illness, and for their families too. Many people think palliative care is just for the final days or weeks of a person’s life but that’s not the case, says Dr Persaud. Instead, it’s most effective when delivered early, before the last stages of life.
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“Living with illness is not just about the physical aspects of care,” says Dr. Persaud. “What causes people the most distress is the emotional and spiritual burden of illnesses–the psycho-social aspects of dying and fear of the future. Palliative addresses the things that cause people suffering that is not always physical.”
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Integrated palliative care is care that “focuses on meeting a person’s and family’s full range of needs – physical, psycho-social and spiritual – at all stages of a chronic progressive illness,” according to the Canadian Hospice Palliative Care Association.
“It is an approach to care,” says Dr. Persaud. “Yes, we focus on the physical, but we also focus on the other components making a person whole. We look at what’s causing you the most distress emotionally.”
According to the Canadian Cancer Society, palliative care can be delivered in a number of settings–home, hospice, long-term care, hospital, even on a park bench for someone experiencing homelessness–and it can come in a variety of forms. It could be about managing symptoms, as Levie’s experience shows, but it could also involve grief counselling, advance care planning, or other support services such as nutrition counselling or physiotherapy.
It can also greatly improve the quality of life for those impacted by a loved one’s illness. “Through Alberta Health Services and palliative care, we got in touch with a counsellor virtually and that really helped with our mental health,” says Levie’s husband Randy.
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While many Canadians start palliative care later in the course of their illness, it’s actually important to have early access to care. This way, patients can experience more control over where they receive that care and it allows them to die in a setting of their choice.
“When it’s integrated earlier in that trajectory, there are better healthcare outcomes,” says Dr. Persaud. “We can focus on the goals of care conversations which direct the way someone is going to be cared for.”
For Levie, palliative care has also offered her some mental relief about her care. “By keeping me at the best that I can be, I’m not a drain on services. I don’t have to go to the hospital every week to have someone look at me. Those expenditures are eliminated and I’m not a burden on society,” she says. “It’s also letting me be the best I can be in an acute illness situation.”
To learn more about how to access palliative care and how it can be made more accessible to Canadians, visit cancer.ca/palliativecare