By Joanne Lynn, MD
A colleague once sent me an obituary notice from a local paper in Arkansas which said, after noting that the 94-year-old woman had gone to live with Jesus, that she “had been troubled in her later years with heart problems and succumbed to the complications of a cold.” How true. That characterizes how many of us will come to the end of life – we’ll be living with very little reserve and even a small thing will be enough to lead to death. This is like walking a tightrope and waiting for a stumble or a breeze. One might manage to keep going for a long time, or one might trip and be gone tomorrow.
The tenuous hold on life that this scenario calls to mind is commonplace among residents in nursing homes. As an attending physician in nursing homes, I was often perplexed as to how to document a death certificate. In so many cases, there are so many causes, the conjunction of which is what actually caused the death at this time in this way. So, of course, COVID-19 will be one of the causes of death for many infected residents in nursing homes, and in many situations, that will be counted as “the” cause of death.
But it is relevant that the person was living in a fragile balance with life before COVID-19. Life expectancy for nursing home residents varies among facilities and among regions of the country, but the median is mostly under one year. It is still a loss to the human community to encounter a cause of death some months earlier than would otherwise have happened, but it is worth knowing that the foreshortening of life for nursing home residents is mostly measured in months. Social Security, for example, expects that deaths from COVID-19 will have an almost negligible effect upon their payouts for old age benefits.
The newsworthy tragedy arises with the sudden deaths of a much larger than usual number of residents of a particular facility. Consider, for example, a nursing home with 240 long-term care residents, where the usual month will have around 20 deaths. In a COVID-19 outbreak in a nursing home that has reasonable staffing and support, it appears that about 20% die with COVID-19 over two months. That would yield 48 COVID-related deaths in that time. Remember, also, that another group of about the same size will have been very sick, whether on-site or in the hospital, which adds to the caregiving and grieving on the part of the staff. So, the situation quickly becomes dire.
However, it is important to consider a statistical perspective on this situation. Assume that this outbreak foreshortened the lives of half of these (and the other half would have died in these two months without COVID-19). That would mean ½ x 48 = 24 excess deaths over two months. Thus, in two months, the facility would have had:
24 (who died early with COVID-19)
+ 24 (who would have died in about this time frame from their underlying illnesses, but they also had COVID-19)
+ (40-24=16, being those who died without COVID-19 playing a part, which is the background rate minus those attributed to COVID-19 but who would have died in this time frame)
= 64 deaths over two months.
That would be enough to be troubling to the staff and families, and probably to get a hostile story in the local paper. The judgement is subtly different to realize that 40 deaths were expected before COVID-19. Over the course of a whole year, the mortality of the residents at the start of 2020 might well be very nearly the same as expected, though 24 died more than a month or two early from COVID-19 infection.
Foreshortening lives by a few months is a real harm and would be better to have been avoided, of course, but it is different from the deaths of people who otherwise were healthy and would have lived for many years. I admit that it is very hard to find the language that acknowledges the pain and loss from deaths of a large number of nursing home residents in a short time while also recognizing that these were somewhat more tolerable than similar numbers of deaths of otherwise healthy people with longer lives ahead of them. Indeed, our culture has a difficult time finding the language or metaphors for death and dying. Whether one adopts a stance of confidence in the afterlife, gratitude for the necessarily finite gift of life, or fury at that finitude, each of us will die. Nursing home residents are mostly in a fragile balance with continued life, with multiple organs having little reserve and multiple identifiable chronic conditions. We need to find a way to acknowledge their nearness to dying without discounting the merits of making the life that is left as meaningful and comfortable as possible.
Consider that the death certificate for the 94-year-old woman who “succumbed to the complications of a cold” will give her cause of death as her heart conditions, even though it was the upper respiratory infection that immediately led to her death. In the case of COVID-19 affecting nursing home residents, the multiple actual causes of death will often include something like “advanced age with a tendency to a dysfunctional inflammatory response, multiple organ systems with greatly reduced function and no reserves, cognitive dysfunctions that yield self-care disabilities, and a last blow from infection by COVID-19.” The death certificate and the tally of deaths on the television news will say, “death from COVID-19 infection.” We need to find a way to maintain awareness of the proportion of COVID-19 deaths that afflict persons who were living “in the shadow of death” – while still honoring, valuing, and supporting their opportunities to live.
This is helpful to read right now as my Mom just passed from Covid complications in a NH. She was very fragile. She had a mild case of Covid in April and appeared to recover, but then died 2 weeks ago after testing positive again. Our struggle was not knowing when to bring hospice back in. And, of course, not being able to see her in person which we felt hastened her end.
I am sorry for her isolation. We should do better. Please tell your Congressional representatives!
Dear Dr. Lynn,
I agree with many of your perspectives on aging, older adults and the supportive society that is currently lacking in our country. However, I have difficulty at times coordinating the best practices of infectious disease with the mind set that because nursing home residents are elderly and often chronically ill/disabled we should not worry if their deaths are increased due to this virus. I understand the statistics you have quoted, but I do believe that it is way too easy for bad actors to use these perspectives to once again discount the value of our elders and easily consign them to an unexamined death.
I think the crisis gives us as a society a chance to pursue policy that more effectively supports so many people in our society,including elders,in more appropriate and effective ways. Will we have the political will to address these issues?
Sincerely, Debra J. Horton
It is difficult to find the right balance so that we simultaneously hold each human life to be of great value, recognize that each human life will end, and bow to the resolution that each person (or their surrogate) finds. I’m contending that we ought to be asking nursing home residents about their view, or asking their appropriate surrogates – and then trying to comply. And I’m noting that large numbers of deaths in nursing homes sometimes reflect poor care, but often reflect the tenuousness of the life being lived, and we should be thoughtful about news stories that claim to be shocked without noting the background rate of dying. Let’s keep trying to find the ways to both honor the lives and the preferences and to acknowledge the finitude that we all face. Suggestions welcome!