The Framework on Palliative Care in Canada was developed in 2018 to “ensure that Canadians have the death that they wish…to relieve suffering and improve the quality of living and dying…” (Minister of Health, Ginette Petitpas Taylor).1 The WHO definition of palliative care also includes the affirmation of life while regarding dying as a normal process, neither hastening nor postponing death, and applying palliative care early in the course of illness.1 These documents were developed to help close the palliative care gap in Canada and the world, since only a minority (37%) of countries have an operational national policy for palliative care.2
In a 2013 study published in the CMAJ, 278 acutely ill elderly Canadians with advanced chronic disease were interviewed in 12 hospitals. In only 30% of these patients did the hospital record reflect their preferences for less-intensive end of life management. In the other 70% who also wanted this, their medical records actually included plans for full resuscitation and technologic support in the event of a life-threatening illness.3
To prevent these unfortunate scenarios, the Canadian National Framework for Advanced Care Planning, was developed and updated in January 2020.4 Advanced Care Planning is not just for those with a life-limiting illness. It can apply to anyone who wishes to clarify their desired care should they lose the ability to communicate during an illness. Despite these laudable efforts, the pandemic of Covid-19 exposed glaring gaps in palliative and advanced care planning in Canada and around the world.
According to Statistics Canada, of the over 270,000 Canadians who die each year, 90% die of a chronic, life-limiting illness.1 According to 2018 CIHI data, 75% of this 90% prefer to die at home but only 15% of them actually do.5 To date, roughly 26,000 Canadians have died with a diagnosis of Covid-19.6 If 90% of these had at least one life-limiting illness and 75% of those preferred to die at home but only 15% actually did, this means that about 60% (or 14,040 people) died, in hospital, many of them on life support, which they did not want. This is a staggering statistic with huge implications, and not an unreasonable estimate since there are no Canadian national standards for data collection or use and few person-centred outcome or experience measures in palliative care.1
Palliative care practitioners know that an infection, rather than the life-limiting illness itself, is frequently the ultimate cause of death. Treatment of any infection near the end of life is inappropriate and yet, many who wished to die peacefully in 2020, ended up on a ventilator because of an infection with Covid-19. When these people died, what cause of death was recorded on the death certificate? Covid-19? The life-limiting illness(es)? Both?
My father-in-law died of pneumonia shortly after he was hospitalized for stage IV prostate cancer. We never say that he died of pneumonia, but of prostate cancer, because he never would have died of the former if he did not first have the latter. It does not seem that this logic has prevailed during this pandemic where people’s life-limiting illnesses have been upstaged by the SARS-CoV-2 virus – at least in the media. If Covid-19 was also the recorded prevailing cause of death without any mention of a life-limiting illness, this will definitely skew our data collection, ultimately biasing any important future research and policy making in future pandemic planning.1
In the early stages, we did not know much about Covid-19, but we did know how to alleviate respiratory symptoms in those dying from terminal lung conditions. The same principles can be applied in a palliative care setting to those dying from Covid-19, instead of the invasive life-saving measures that did not work and were never wished for. Newspaper comments like “drowning in their lung fluids” and “dying alone” in the company of “staff,” instead of their loved ones, to describe the deaths of those who really wanted palliation were horrible experiences which could have been avoided.
Thanks to such descriptions, the panic spread with lightning speed towards a global level of unprecedented restrictions and lock downs. In this environment, palliative care didn’t stand a chance. Our knee-jerk reaction to “conquer the virus” extended our battlefield across even more people who just wanted to die peacefully rather than “take up arms.” While we may congratulate each other on other fronts, we all failed these people, having caused them and their families a most undeserved, terrible, and irreversible harm. This, and not their deaths, is the real tragedy.
Does it take a pandemic to learn that death is an unavoidable part of life? Our role as physicians is not to prevent death at any cost, but to support both the living and the dying as they wish to be supported. Person-centred care and equitable access,1 should always be at the forefront of all medical care – even and especially, during a pandemic.
So, what have we learned? Should our future pandemic planning include giving people the option to die of it at home, in the presence of their loved ones, with appropriate supports? Should we ensure that everyone, but especially those with at least one life-limiting illness, prepare an Advanced Care Plan (that includes a pandemic plan) before the next pandemic? Of course we should! If we do, the numbers of those who choose a home death rather than repeating the tragic pandemic headlines of history, may surprise us. It may even surprise us if the next pandemic does not cause panic!
As our health minister wrote, “to ensure that Canadians have the death that they wish…we know we have more to do…” Let’s get it right next time!
Irene Polidoulis MD, CCFP, FCFP – an Orthodox Christian in Canada
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- National palliative care capacities around the world: Results from the World Health Organization Noncommunicable Disease Country Capacity Survey, Lee Sharkey, Belinda Loring, Melanie Cowan, Leanne riley, Eric L Krakauer, Palliat Med. 2018 Jan;32(1):106-113. doi: 10.1177/0269216317716060. Epub 2017 Jul 5.
- Enhancing the Quality of End of Life Care in Canada, Deborah Cook, Graeme Rocker and Daren Heyland, CMAJ Nov 05, 2013 185 (16) 1383-1384; DOI: https://doi.org/10.1503/cmaj.130716
- Advanced Care Planning in Canada – A Pan-Canadian Framework, January 2020 https://www.advancecareplanning.ca/wp-content/uploads/2020/06/ACP-Framework-EN-Updated.pdf
- Almost All Canadians would benefit from palliative care. Only one-in-seven actually access it at end-of-life. Andre Picard, The Globe and Mail, September 18, 2018
- Worldometer https://www.worldometers.info/coronavirus/country/canada/
