According to the most recent 2014 LHIN report on palliative care in Ontario, there were 90,900 deaths in Ontario, 36 percent of which were seniors aged eighty-five or older.16 This is only a slight increase from 88,200 deaths in 2008–2009 (32.6 percent being seniors aged eighty-five and over) and 88,800 deaths in 2010–2011 (34.7 percent being seniors aged eighty-five and over). Yet the upward trend in deaths and the increasing proportion made up by seniors aged eighty-five and over is notable.
In the HNHB sub-region, there were 12,11 deaths in 2012, which is a mortality rate of 848 per 100,000. It is also worth noting where these deaths occurred in 2012–2013.17
- 39.9%—Acute Care (including psychiatric facilities)
- 10.8 %—Complex continuing care
- 5.3%—Emergency Department
- 20%—Long-Term Care
- 0.2%—Rehabilitation Facilities
- 23.8%—Home with/without Supports
What this reveals is that home death (even if that includes home death without proper medical supports) is a likely option for over one-fifth of the population in the HNHB sub-region, and that combined with long-term care, almost half of those who died would have done so at home or in a longterm-care facility. These numbers and how they have trended over the past five years are encouraging. However, almost half of all deaths in this region did occur in acute care settings. As the interviews will make clear, this is not necessarily problematic unless, of course, there were better alternatives available for them to have a natural death.
Using LHIN’s definition of a “palliative patient” as someone who “has died in an acute care hospital, excluding those who died of significant trauma or injury,”18 it should be noted that those who did die of a significant trauma or injury in Ontario only composed 5 percent of the deaths in acute care hospitals in 2012–2013. This means that 95 percent of the acute-care deaths were palliative patients and of these 81 percent were aged over sixty-five.19
Zeroing in on the HNHB sub-region, we find that 84 percent of palliative patients were admitted through the ED. This is only 4 percent higher than the provincial average of 80 percent. What is perhaps even more interesting is that in 2012–2013, nearly “15 percent of palliative patients were transferred from long-term care home and 75 percent were living at home prior to acute admission.”20 At 13.6 days on average, the length of stay (LOS) for HNHB patients is just shy of the 14.4-day Ontario average; however, this Ontario average is more than double the LOS of all other patients (6.3 days).21
According to the Ontario Ministry of Health, an ALC patient “is occupying a bed in a hospital and does not require the intensity of resources/services provided in this care setting (Acute, Complex Continuing Care [CCC], Mental Health or Rehabilitation).”22 In 2012–2013, 10 percent of ALC patients used more than 52 percent of the ALC bed days. The HNHB sub-region does not deviate from this provincial story given that 50.7 percent of the ALC bed days are used for palliative patients.
When it comes to the final months of life, readmission into the hospital is quite common for palliative patients; in fact, nearly 39 percent of palliative patients in Ontario will be readmitted into a hospital in the last three months of life. In the HNHB sub-region, the numbers are slightly lower, at 36.3 percent.23
Unfortunately the data here subsumes Hamilton proper into the larger HNHB sub-region; however, the trend here across this sub-regions indicates that in Hamilton there is still a significant gap between what we need and what we have. In many ways, then, Hamilton seems to present a case in point of the national narrative around long-term care: the current infrastructure is not enough to handle the future needs of palliative care as the “silver tsunami” of baby boomers draws near.
More than Infrastructure
But while we need to address these potential infrastructure shortages, we also need much more than infrastructure. We need a change in our attitudes and dispositions, our habits and practices. We need a change in our conversations about the death and dying of our family members and neighbours, and we need a more robust understanding of how we are all—as individuals and institutions—implicated in this important issue.
In order to get a better understanding of just how such changes might take place and where some of them already are taking place, Cardus conducted interviews during the spring and summer of 2017 with some of the key stakeholders in the city of Hamilton and the health sciences. For a full list of the interviewees, please consult appendix A.
The Palliative Care Landscape: Perspectives on the Ground
An Overview of Hamilton’s Palliative Care landscape: Tempered Optimism
After scanning the palliative care landscape in the city of Hamilton, and more broadly in the HNHB LHIN region, there was, overall, an encouraging tone of optimism across several sectors from the various stakeholders interviewed. This is not to suppress some strong criticism we heard, nor to deny that numerous improvements could be made. However, there is a shared sense that the city of Hamilton is really starting to address the gap between current infrastructure capabilities and the demands that will be placed on them in the coming years as the baby-boom population ages and dies.
The current vice president of oncology and palliative care in Hamilton Health Sciences (HHS) and the regional vice president for Cancer Care Ontario is encouraged by the possibilities of the recently formed Ontario Palliative Care Network (OPCN), “a partnership of community stakeholders” working to address the aforementioned gaps in palliative care in ways that will better serve all Ontarians.24 According to their site, their mandate is threefold:
[First] Act as the principal advisor to the government for quality and coordinated palliative care in Ontario; [Second] Be accountable for quality improvement initiatives, data and performance measurement and system level coordination of palliative care in Ontario; [Third] Support regional implementation of high-quality and high-value palliative care.25
Although he is a key stakeholder of the medical profession, his tempered optimism is that the OPCN works from an understanding that end-of-life care is not only an issue for hospitals and the medical profession. Therefore, the HHS has a role to play, but it must be done in conjunction with the individuals, families, and communities in Hamilton who are served.