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.
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Thank you for this excellent article. One thing that is missing here is recognizing that not all LTC residents have surviving family or friends that can visit and advocate for them. They are more at risk than most of being overlooked, abused and/or neglected. Also there is a great difference between Long Term Care and Palliative care. They must be addressed individually along with the transition between the two
Very well written. Thank you.
“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.”
Even sadder, palliative care has been grossly under-resourced for decades. The ability for underperforming LTCs to access palliative care support is hindered by the lack of vision and foresight to recognize this. The federal government’s “Action Plan” for palliative care will also not address these issues. More must be done.
I am interested in supporting any group that is working on this important issue. Thank you for writing this article. This is the he shadow side of not having a robust pandemic plan that has been developed with input from all stakeholders. It is stressful and heart-breaking for all!
It is unacceptable and unforgivable treatment by our government to prevent “caregivers” from being with their loved ones in LTC at the end of their lives. It is also inhuman to caregivers who will be haunted by this soul destroying memory until the end of their own lives. Please, this emotional ABUSE & NEGLECT must STOP
Thank you both for this important article. Part of what you are describing is the moral distress created by the conflict between what we know we ought to be doing, and what is actually happening. Leaders at all levels can anticipate these conflicts and work proactively to prevent and mitigate them. COVID-19 is not our first nor our last catastrophe to learn from.
As a nurse, I have suggested “end of life suites” for unexpected and predicted death. Many times there are no palliative beds. The suite would be easily accessible in emerg, ICU and long term care so visitors have privacy to come and go. A kitchenette, couch/chair for guests to rest allows family to stay. Patient bed can be larger to allow someone to snuggle. It could be supported during pandemic precautions.
I’m wondering why you chose not to mention training/professional development in palliative care for LTC staff as one of the actions that must be taken. An excellent article, and I am extremely grateful to see it, but my experience is that it all rests on the attitudes and understanding of the staff.
My thoughts exactly, Anne. Training is absolutely key. This is where fundamental change begins.