The process of dying – what happens during those days, months, even years before we die – has changed a great deal in recent decades. We live longer than our parents and grandparents, we die for different reasons, we are less likely to die at home, we receive astonishing treatments, and our dying costs more. We should understand and prepare for that important time of our life.
Now, the COVID-19 pandemic has added its imprint on the end of life in a matter of weeks, not decades. It has or will touch nearly everyone in some manner. It has raised critical concerns about the allocation of resources threatens to disrupt established practices of respecting individual autonomy and decision-making, and may affect not only a person and their loved ones at the end of life, but also how that person is honored after death.
As COVID-19 spreads at a relentless pace, its threat to life has provided more relevance to what we have known all along about preparing for the end of life. We should make our wishes known about health care decisions well in advance, appoint a health care proxy to make decisions for us if we cannot make them ourselves, and attend to other personal matters. These preparations have always been important but because this pervasive pandemic affects everyone, across all ages, the need for such actions is especially significant.
Yet, perhaps most disturbingly, what I formerly discussed with students about the ethics of the use of scarce resources has moved from a classroom exercise to a near unavoidable practice. A prominent example is the allocation of ventilators. Patients who need ventilators typically use them longer than other patients do. Thus, an increase in the number of ventilated patients not only requires more ventilators but also, when used on COVID-19 patients, they are tied up longer, compounding the need for ventilators.
When ventilators become scarce, by what criteria should we decide who gets one? We will need to move away from the primary focus on the individual patient, which derives its origins from the Hippocratic tradition 2,500 years ago, to take into account the needs of the community, superimposing a public health perspective on the care of people. Current discussions include the development of triage committees comprised of people who are not involved in the care of the patients in question. This is a distinct departure from how we have made important end of life decisions. Rather than having doctors talk with the patient and family to arrive at something that aligns with the patient’s wishes, we now may be asking a committee of disinterested persons to make recommendations based on a multi-factor scoring system, which could include valuations of the sick person’s age, coexistent illnesses, and other determinants of prognosis.
An even more ethically fraught question is, how do we decide who no longer should have a ventilator? Until now, doctors have withdrawn ventilators for two related reasons: the patient’s clinical situation is futile, meaning, nothing can be done to improve that person’s medical condition or it is the wish of the patient to stop treatment, often expressed by the patient’s surrogate decision-maker. Now, another reason could be that a different patient might need the ventilator more. Perhaps at some point the ventilator should be taken from a person with a poor prognosis and given to a person for whom there is greater hope. Perhaps the most difficult adjustment we will need to make will be that a person’s previously expressed wishes about end of life decisions could be overridden, presumably in the best interests of other people rather than what the individual has deemed best for themselves.
One of the most poignant effects of this pandemic on dying became real to me recently when I learned of the death of a former colleague. He had lived a long and extraordinarily productive life, was admitted to a hospital because of complications of a chronic illness, and developed COVID-19. Here was a real person, not a statistic, not someone I had read about or seen on TV. Because of restrictive visiting policies, loved ones and friends could not visit him. He died alone under circumstances that subvert much of what we think is right at the end of life.
Death stills lays claim as the common, final experience. However, what seems to have changed now is that, because of restrictions on funerals and gatherings for memorial services and the like, COVID-19 reaches beyond death to affect the traditional celebrations and remembrances of the deceased. The disease’s heavy grip is evident on both sides of the moment that divides the end of life from eternity.
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