Not scared of dying but of dying scared
The award-winning British novelist, Jonathan Trigell, notably said, “Dying alone is a deep fear for most people. I’m not scared of death but I’m scared of dying scared. Maybe everything else in life comes from those two points: the separation anxiety of childhood and the ultimate fear of dying alone.”
This ultimate fear has turned into a devastating reality for Canadians living in long-term care facilities across the country during this global pandemic. The most harrowing story came in early April from the Résidence Herron in the Montreal suburb of Dorval. Marketed as an upscale, luxury retirement home, public health officials were said to have found the facility essentially deserted with residents laying in soiled beds, a number of them dead.
COVID-19 has shone a bright light on a flawed system in need of dramatic reform, and on a workforce that must be better supported and empowered to provide meaningful end-of-life care. This is not to place blame at the feet of our underpaid and undervalued care workers. These workers are cycling in and out of and in-between long-term care settings without proper resources, training and educational supports. This workforce, much like the residents that they care for in an ageist society, has been largely ignored.
While COVID-19 has brought this issue into focus, the lack of end-of-life support in long-term care has been an ongoing injustice. Research by our pan-Canadian research team, SALTY (Seniors – Adding Life to Years), has detailed what many working at the intersections of palliative care and long-term care have known for decades; most Canadians who go into long-term care facilities die there. Previously, the majority of deaths took place in hospital, however more recently we have seen deaths increasing at long-term care settings, further emphasizing the importance of integrating palliative care approaches.
There are, thankfully, some deaths occurring in long-term care that are well managed by staff and are peaceful for residents. These care facilities adhere to best end-of-life practices that pay close attention to residents and support them where they are in their end-of-life trajectory.
This, sadly, is not the norm.
At times, deaths occur with symptoms like pain and breathlessness going unmanaged, with no advance care plans in place and little sense of what is most important to residents as they make the transition to end-of-life.
Right now, there is an immediate need for provinces and territories, with federal oversight, to help front-line workers provide end-of-life care to residents infected with COVID-19, including:
- Providing the required personal protective equipment for family members, one at a time, to be with their dying loved ones.
- Providing employees with the necessary tools and equipment, and the capacity, to support families to be involved at the end of life through video conferencing, if appropriate. This could allow for family members to “see” their loved ones, talk with them, and for final goodbyes to take place.
- Deploying social workers, or similar professionals, to connect with family members remotely to best assess how they can be supported.
- When possible, conducting advance care planning with all residents so that there is a clear plan in place for what they, or their family members, would want in the event that the resident is infected with COVID-19 and their prognosis is terminal.
Advance care plans are not the same as do-not-resuscitate orders. They provide a process to honour the last hopes and wishes of residents as they make the final transition. How much treatment do they wish to have? Who do they want to make healthcare decisions if they are no longer able to make them for themselves? If death is near, who do they want with them to make the transition more peaceful?
Potential also exists for the online memorialization of residents who have died through video calls with select family members to reflect on a resident’s life, share memories, and provide loved ones with a deep sense of how their relative or friend was cared for.
We also need to provide our front-line workers with the support they need to help them through the anguish they are experiencing as they witness so much death. Death that they could not have prevented and that may have been undignified for the resident.
COVID-19 is creating additional challenges for residents and workers. For some, their experiences will be difficult to get over. We could have perhaps pleaded ignorance to these scenarios before the advent of COVID-19 but that no longer holds true today.
There is no excuse to turn our backs. To not act now would be an acknowledgement that we simply don’t care.
Kelli Stajduhar, RN, PhD, is a Professor, School of Nursing and Institute on Aging and Lifelong Health, University of Victoria, British Columbia.