Almost three in every five Canadians are now getting palliative care at the end of their lives – roughly 200,000 people annually.
A growing number of them are receiving this vital care at home.
That’s the good news that can be garnered from new data published by the Canadian Institute for Health Information.
The bad news is we don’t really know what “palliative care” consists of. There are no real standards. In some cases, it may be little more than a checkbox exercise, using a standardized list to determine if a patient qualifies for this care. (And, of course, in other cases, it may be wonderfully expansive.)
This is essential care, but there is no information on what palliative care people actually receive, why they qualify (or don’t), and who decides. This is the antithesis of patient- and family-centred care.
We do know the “where” – sort of. Sixty-one per cent of Canadians receive palliative care solely in a hospital, 36 per cent at home, and two per cent in long-term care. There are many hospices in Canada, but the numbers don’t always get counted because they’re not a formal part of the health system.
We know, too, that there are still far too many barriers to getting palliative care. It’s in short supply.
Pain relief (the principal, but not only, focus of palliative care) tends to start too late and its availability is uneven.
The large majority of those accessing palliative care have cancer, followed by those with chronic heart and lung conditions. But very few people living with dementia get palliation at end-of-life.
Perversely, one of the hardest places to get palliative care in Canada is in a long-term care home, where life expectancy after admission hovers around 18 months. If anything, care homes should be glorified hospices. Right now, they tend to be places where you decline until you get shipped off to a hospital to die.
Similarly, the CIHI report reveals that the group that has the most difficulty accessing palliative care is those aged 85 and older, the demographic group wherein the death rate is highest.
Studies show that some groups also have more difficulty than others in accessing palliative care, such as racialized people, recent immigrants and those living in poverty and homelessness. But Canada does a poor job of collecting race-based and socio-economic patient data, so we remain largely in the dark about the gaps.
As the CIHI report states dryly: “Palliative care should be accessible to all Canadians regardless of their age, their sex or gender, the expected path of their illness, their community, their socio-economic status or their culture. Our analysis shows, however, that this isn’t the case.”
One of the most disconcerting aspects of the new study, entitled “Access to Palliative Care in Canada,” are the glaring data gaps that are revealed.
The findings we have are based on just four jurisdictions that could provide complete data – Ontario, Alberta, B.C. and Yukon.
Why? Because most provinces don’t collect palliative care data for home care, long-term care settings, or hospices, leaving the picture incomplete. Most provinces and territories don’t even know how many palliative care beds they have available.
It’s all very much by-the-seat-of-our-pants, and that’s tragic.
Palliative care focuses on managing symptoms, and reducing pain in particular. It’s not supposed to be just about end-of-life, but providing psychological, social, emotional, spiritual and practical support to patients with a life-limiting condition.
That care should be available over the course of weeks and months and, in some cases, intermittently over a span of years.
But in Canada, half of those identified as palliative die within 22 days. For those receiving care in a hospital, the period is even shorter – 11 days. But half of those receiving care at home die within 119 days.
Obviously, home is the place you want to be cared for (or a home-like facility, such as a hospice).
But only 13 per cent of Canadians die at home with palliative care. That’s up from seven per cent five years ago, but still woefully inadequate. (By contrast, 44 per cent of patients who choose medical assistance in dying (MAID) die at home, and 81 per cent of MAID patients get palliative care first – it’s not an either/or choice between the two services.)
Likewise, only 19 per cent of long-term care residents receive palliative care in the last year of life, but most get shunted off to a hospital.
There are a lot better places to die than in Canada.
We need to start taking hospice and palliative care more seriously, acknowledging that quality of death is just as important as quality of life, and one can inform the other.
André Picard