End-of-life and palliative care shouldn’t be either
In preparing my presentation for OMATalks: Planning for the Next Pandemic, I was asked to speak about providing end-of-life care during the pandemic from the perspective of a palliative care physician, my experiences and the lessons I learned that I will take forward. From acknowledging the suffering of frail homebound patients to questioning our values as a society, here are some of the highlights of what I observed in the past year providing care to patients in need.
We have become inundated with data throughout the pandemic. Case counts flash across screens constantly. However, are the numbers capturing the entire story? Unfortunately, the pandemic has targeted many already disadvantaged groups and yet, the disparities are not clearly reported in the blanket numbers.
Homebound frail patients lack the resources to seek help, to access COVID-19 testing and to get their vaccinations—these have all been major challenges and still, we collect very little data on this population. We do not know the extent of suffering within this high-needs group, even though from a demographic perspective they share many similar qualities to those in long-term care, who sadly, have suffered a great deal as well.
Equally, if not more critical, are personal support workers and other essential workers whose determinants of health have put them at extreme risk. They are the unsung heroes of this pandemic. At the beginning of the pandemic, personal protective equipment was inadequately available to this population. For many working in long-term care facilities, part-time contracts with no benefits meant they had to work in multiple facilities increasing the risk of spread. Paid sick leave and time to seek medical care, including vaccination, continues to be a shortcoming that is worse in the third wave. Paid sick days is an urgent public health matter that continues to be something physicians advocate for because it is the right thing to do and it saves lives. Many in this contingent are female, racialized and at risk.
Throughout the pandemic, scenarios like these truly question our values as a society: what do we value, who do we value, and do our actions align with these values?
Death and dying have become a primarily hospitalized experience. The majority of deaths in Ontario take place in hospitals; however, most Canadians identify their wish for an end-of-life experience in a home or home-like environment. Unfortunately, socioeconomic factors heavily weigh into this as well. Often, only those with the ability to take time off or employ private care can facilitate deaths at home.
The pandemic has also shown us that we need to have a serious conversation about palliative care and end-of-life care. Where do we want it to happen? How should it happen? And what gets in the way of it happening as many patients wish? Our provincial health-care system is very hospital focused and home and community care receive far fewer resources. At the outset of the pandemic, resources were directed to acute care with the anticipation of overflowing ICUs and ventilator shortages. The mass casualty experience, unfortunately, was seen in our long-term care and retirement homes and other congregate-care facilities, but we were slow to reinforce these facilities the same way we did with hospitals at the outset. I often reiterate that not all the sickest patients were in ICUs. Interestingly, the resources allocated to a patient dying at home pale in comparison to those allocated to a death within a hospital.
Home-based primary and palliative care programs were inundated. Home-based patients were fearful of hospitals because of their concerns for exposure to COVID-19 and the restrictions on visitors. Sadly, in the early days of the pandemic, PPE supplies were also frighteningly low, while the exposure risk was very high in home-based settings. Limited ventilation and crowding contributed to the spread of the virus.
However, we also saw what value these types of teams can offer and they need to be expanded. Programs such as the Community Palliative On-Call Program (CPOC) allow teams to provide wraparound care to those with the greatest need. Unfortunately, this program has been frozen for several years while many more providers see the need for this in their communities. We continue to advocate for the expansion of this program to all communities, thus improving access to palliative care services and addressing the current health inequities that exist in our province, even within the resource-dense GTA. Further access to care through virtual tools has made a significant improvement in the ways in which families can reach their primary and palliative care providers and needs to continue.
There is a lot of discussion about the eagerly anticipated time when we can get “back to normal.” It is exciting to think of the prospect of joining together, having a meal with loved ones and embracing one another again. However, I think we need to take pause. The pandemic has been a shared experience of trauma, personally and professionally. We need to make time to heal. I challenge the notion of a direct return to normal. When someone dies, we grieve. Similarly, we need time to grieve the experience of loss brought on by the pandemic.
While our health-care system has been solely focused on managing the pandemic, there is an impending backlash of care that has not happened—delayed surgeries, deferred preventive health and screening, and the mental health burden of the pandemic. The tired health-care workforce will be challenged to tackle these once COVID-19 becomes a thing of the past. As health-care professionals, we have seen things we cannot unsee. We have been stretched past our capacities. There will need to be time for us to reunite and recover.
The impact of the pandemic will hit us. COVID-19 has been a high-intensity event. Coming out of it, there will be an adjustment. Life won’t be the same. We can’t all just snap back together. It will be important to name, define and accept this transition period. We should not be in a big rush to normal. That’s another lesson learned. If we really do want to overcome the pandemic and its effects, and collectively heal, here is a start. Be kind to others and to ourselves. While we have seen many numbers during the pandemic experience, sometimes we need to focus on a simple number: one.
Dr. Pamela Liao, CCFP (PC), is assistant professor, Division of Palliative Medicine, Department of Family and Community Medicine at the University of Toronto, and chair of the OMA Section on Palliative Medicine.