Dying in Long-Term Care
In my province of British Columbia, the B.C. Centre for Disease Control guidelines suggest that there is indeed room for “essential visits” in long-term care facilities.One might argue that those in long-term care aren’t imminently dying and so perhaps the right of family to be present doesn’t outweigh the risks of COVID-19.
Firstly, however, families with people in long-term care will tell you that their visits are essential. The COVID-19 crisis has revealed many of the fault lines in our long-term care system.
Secondly, what health care practitioners call an “end-of-life situation” exists on a continuum.
Community Versus Individual
In times of pandemic, ethical decision-making tends to emphasize the good of the community over the good of the individual.But paradoxically, the good of individuals is also harmed when they are prevented from honoring their community and family ties. How we approach these difficult decisions reveals a lot about what we see to be most valuable in life and how we perceive the good.
But if impinging on the rights of an individual is actually a matter of harm—insofar as it violates ancient social and ethical values about care for elders or the dying, and thereby hurts the dying and their loved ones—we need to think differently.
Deliberating such challenging ethical decisions, and having the adequate resources to respond to them, can rarely be accommodated ad hoc. Rather, it requires careful planning at a systems and institutional level and significant resources, space, education, screening, and infection control measures.
Harm-Reduction Approach
Those we love are an integral part of our dying journey. So much so that a recent court case in the United Kingdom concluded that patients have a fundamental right to be with their family at the time of death.In a context where patients are receiving a palliative approach to care, we need to start from the assumption that living and dying alone is so potentially harmful that we need to balance harms using a harm-reduction approach.
We provide treatment that seeks to attenuate harm, even if there is some risk involved. Perhaps we need to be applying this same strategy to keeping dying persons and families together in palliative care.
Perhaps particularly in the context of a limited life span, for individuals in care, the harm of separation must be considered alongside the harm of infection. Respecting the rights of those who are dying would then mean we need to allow them and their loved ones to take some risks. This means, of course, ensuring that facilities are adequately resourced not only with the equipment they need to protect staff and visitors but also with personnel who can collaborate across care teams.
Until we reach herd immunity, find a treatment, or develop a vaccine, COVID-19 is here to stay—but these precious lives are not. Giving people permission to be together at the end of their lives will take some ingenuity and money. But it’s the right thing to do.
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