Jocelyn Downie and Georgia Lloyd-Smith dispute the oft-repeated claim that current rates of access to palliative care in Canada are between 16%-30%.
Assisted death is the subject of conversation in the media, in public meetings, and around kitchen tables across Canada. Often these conversations include discussions about access to palliative care with some people claiming that assisted dying should not be allowed until access to palliative care is improved. So, what is the evidence on access to palliative care in Canada?
A recent press release from the Canadian Medical Association on its National Dialogue on End-of-Life Care tour stated that “fewer than 30% of the Canadians who will die in 2014 will have access to palliative care.” The Senate of Canada Report “Raising the Bar: A Roadmap for the Future of Palliative Care in Canada” stated that “[i]n 2008, a best estimate suggested that somewhere between 16-30% had some level of access, depending on location.” The 2011 report of the Royal Society of Canada Expert Panel on End of Life Decision-Making claimed that “As many as 70% of Canadians lack access [to palliative care].” In 2012, Justice Smith in Carter v. Canada concluded that “high quality palliative care is far from universally available in Canada” and quoted a Crown expert: “Unfortunately only 16-30% of Canadians receive palliative care as part of their life-threatening illness.” A 2014 comparative study of Canada, England, Germany, and the United States stated that “the hospice palliative care utilization rate was 16%-30% of all deaths.”
That only 16-30% of Canadians have access to palliative care (or, its derivative, 70% are without access to palliative care) seems to be an accepted fact. But is this, in fact, true?
With a little detective work, we were able to track down the source of this claim – a Hospice Palliative Care in Canada Fact Sheet produced by the Canadian Hospice Palliative Care Association (CPHCA) in 2010. It in turn references a report released by the Canadian Institute for Health Information (CIHI) in 2007. The Fact Sheet claims that “only 16% to 30% of Canadians who die currently have access to or receive hospice palliative and end-of-life care services.”
But there are significant problems with this claim. For example, the CIHI report is based on data from 2003-04 and relies on data from only the four western provinces. Furthermore, contrary to what the Fact Sheet suggests, the statistics on access deal only with patients who received palliative care in-hospital and died in hospital. The statistics do not reflect palliative care at home or in non-acute care hospitals. This fact matters because 42% of deaths occurred outside of the hospital setting and hospitals are not the only places where Canadians can receive palliative care. Provincial palliative care units, chronic care facilities, nursing homes, and residential hospices also provide end-of-life care.
In addition, the “16-30%” figure used in the CHPCA Fact Sheet is a misrepresentation of the original data in the CIHI report. There is no table in the CIHI report from which a 16-30% range can be derived. One can derive a range of 13-16%, for the percentages of all deaths that were palliative hospital deaths across the provinces. Alternatively, the range of all palliative hospital deaths at the level of the regional health authorities is between 5-28%. The CIHI report itself notes that “[t]he method used to distinguish palliative care from acute care at the end of life is based on diagnosis and service codes that appear in the hospital record that may have been recorded differently in different provinces (for example, in the case of Manitoba these codes were used on palliative units only), so these estimates should be interpreted with caution.”
A more recent study published in 2011 using data from Atlantic Canada in 2007-2008 found that 59% of those dying in hospitals received some type of palliative care during their final hospital admission. As well, a 2013 CIHI study reported that 82% of cancer deaths in acute care hospitals were documented to receive palliative care. Meanwhile, the past 10 years have seen an increase in funding for palliative care research, new initiatives to improve access to palliative care, and improved education of health care professionals. With all these new developments focused on expanding the availability of palliative care, it is likely that data from 10 years ago no longer reflects the current rates of access to palliative care in Canada.
And so, we are driven to the conclusion that the oft-repeated claim that only 16-30% of Canadians have access to palliative care should be retired. It is based on a misrepresentation of outdated data and it ignores the provision of palliative care outside of the acute care hospital setting.
Is there a better estimate to rely on? Sadly, no. There is no way to know how many patients have access to palliative care in Canada. We lack up-to-date, reliable data on access to palliative care across Canada that includes palliative care delivered outside of acute care hospitals. Until this data is gathered, we can only say that access to palliative care in Canada varies wildly. Research is desperately needed if our policy-making on assisted dying is going to rest in any legitimate way on claims about the availability of palliative care.
Georgia Lloyd-Smith is a graduate of the Schulich School of Law at Dalhousie University, Halifax, Canada. @GeorgiaLLS
For more on this topic, see Jocelyn Downie and Georgia Lloyd-Smith, “The Making of a Myth: Unreliable Data on Access to Palliative Care in Canada” (forthcoming in the Health Law Review, December 2014) (here)