“He had the right to die in dignity and not alone and the exact opposite happened.”
So says Charlene Rocke of her husband Alva’s death in 2022. While his cancer, which ultimately was terminal, was diagnosed formally in February, the 74-year-old man didn’t meet with his oncologist until April 4th. He died a week later in a local emergency department.
The palliative care Rocke expected in the whirlwind of events was in the end, not to be. “He died in the most undignified manner in pain, alone and afraid,” Rocke said. “We were abandoned and weren’t given any information about what to expect or how to help him cope. We had expectations of our healthcare system and instead we were googling how to support him.”
Rocke’s assumption on how palliative care would help her husband and her family is likely one many Canadians share. However, Canada has a seemingly patchwork system of palliative care and it’s having a detrimental effect on many Canadians suffering serious illnesses–from cancer to Alzheimer’s to Parkinson’s and more.
While the system is costly, Alva’s experience also shows it’s not offering all patients the care they and their families hope for. “The system has a lot of people in it working really hard to provide the best care they can. But there are a lot of gaps,” says Daniel Nowoselski, advocacy manager, hospice palliative care for the Canadian Cancer Society.
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What does palliative care entail? “Palliative care provides all of the quality of life supports that one might need when facing a serious illness,” says Nowoselski. This includes pain and symptoms management; skilled psychosocial, emotional and spiritual support; and comfortable living conditions with the appropriate level of care.
Palliative care can be provided in a variety of settings including a home, a hospice, long-term care facility or hospital. “It could include psycho-social supports so getting access to a counselor about how you’re feeling about your diagnosis, about your grief but also your loved ones,” says Nowoselski. “It can also help with practical supports–everything from financial support while someone is going through treatment to pain and symptom management.”
Good palliative care can change the quality of life for someone living with a life-limiting illness. “We want to make sure people have a meaningful experience as they’re going through this difficult challenge,” Nowoselski says. “Often when palliative care is delivered early, people can live longer and have a more fulfilling life. Whatever we can do to make that experience less difficult for people, we as Canadians think our system should deliver that.” On the more practical end, good palliative care also means less use of our hospital emergency departments, a system that’s currently under significant pressure.
However, there are barriers to good palliative care. Access to care differs by geography and population. “People living in rural or remote communities find a difficult time accessing it or the full suite of options potentially available,” says Nowoselski, noting that there are also gaps in accessing care for communities such as First Nations, Inuit, Metis, unstably housed/unhoused and those with a language barrier.
People living in a long-term care facility are also less likely to get palliative support; a 2018 Canadian Institute for Health Information study showed that only 6% of long-term care residents and 22% of residents identified as having less than six months to live were recorded as having received palliative care in the last year of life.
According to the Canadian Cancer Society, many Canadians also don’t know how to access care and are often only referred to it later in their illness trajectory. “It’s a patchwork and it really requires someone to advocate for them as opposed to automatically getting it from the point of diagnosis which is how we think the system should operate,” said Nowoselski. Generally, the better that trajectory is understood, the more likely it is that that person will receive palliative care. “If you have a rare illness or complex care needs based on multiple conditions (ie cancer and dementia), people are less likely to get the palliative care referrals they need, and certainly less likely to get it in a timely manner,” says Nowoselski.
However, the biggest barrier of all may be not knowing what it is or how to advocate to receive it. Some healthcare providers may be reluctant to discuss or refer patients because they fear they’re scaring the patient with the idea of death or give them the belief that they are giving up on life-saving measures. “The common misconception is that palliative care is only for end of life,” says Nowoselski. “Instead of seeing it as a failure to cure someone, it should be seen as a support system to help live well.”
Add to this the circumstances of the world today–namely, the effect the pandemic has had on the system. “The palliative care system hasn’t been immune to the challenges in terms of doctors and nurses and palliative care workers leaving the system,” says Nowoselski.
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Greater investment in the system, particularly both in hospice care and hospices across Canada as well as homecare, can help provide more access to support. “We also need to measure the data about the care we provide. We don’t have a really clear picture of that care, particularly across all these different settings. We rely on hospices and charities to fundraise most of their operational costs to provide this care and that’s not a sustainable system,” Nowoselski says. “Decisionmakers on all levels need to think about the system we have now and to make sure it’s the quality system they would want for their loved ones if they needed it.”
That way, those who need palliative care can have a better experience than Alva Rocke did. “To me, my husband was treated in the end in a cruel and inhumane manner. You wouldn’t expect someone to die in excruciating pain alone,” said Charlene Rocke. “Nobody should die that way in this country. Ever.”
To learn more about the importance of quality palliative care and how it can be made more accessible to Canadians, visit cancer.ca.