HONORING DEATH: Philosopher and Clinician, Jeremy R. Simon

Jeremy Rosenbaum Simon, MD, PhD (USA),  is an emergency physician, medical ethicist and philosopher of medicine on the faculty of Columbia University. He is a member of several local and national ethics committees and chair of the International Philosophy of Medicine Roundtable, the leading organization of philosophers of medicine.
The question at hand is Honoring Death: Does the public’s interest in social distancing outweigh the patient’s right not to die alone and the family’s right to be with their dying relative? The issues raised by the situation Dr. Kritzinger describes in this regard need to be ethically analyzed on two levels. The first is the question of the nature of the rights under consideration, and the second is the question of the nature of rights in general at this time of public health crisis.
The dilemma as posed presupposes two different but related rights. That of the patient not to die alone, bereft of their family, and that of the family members not to be separated from their dying loved one. Of course it would be difficult to honor one of these rights without honoring the other, but with two rights in play, there are more arguments to be made in favor of respecting them.
One might think that right of the dying person is the more powerful right here. The dying are often given special consideration due to their status, even those being executed (last meal, cigarette, blindfold). The right to have comfort in dying, which ordinarily is not problematic, would seem to be something patients are entitled to. And certainly on some level they are. Being alone in a stressful time is frightening, and patients have a right not to be subject to undue fear. But if we focus on the right to visitors particularly of the dying , and not all patients, this right may seem to be somewhat reduced, especially in the current situation. First, patients can only be considered dying for a brief part of their hospitalization, when it becomes clear that they cannot be kept alive much longer, or when life support is being removed. Thus, any harm that may be caused by violating this right is mitigated by the relatively short time during which the right is being violated and the patients are exposed to unnecessary stress. Second, and this is relevant particularly to COVID, a large percentage of the patients who die are intubated and sedated at that point. Even to the extent that patients in general may have a right not to die alone, it is not clear that this right extents to unconscious patients. This is not to say that it does not. It may be an intrinsic matter of human dignity not to be abandoned at the time of death. But, even given that, hospitalized patients are not abandoned; they are not even without those who care for them. They are just without those with whom they have long-term bonds of affection. Note that the second point is of limited applicability, since many patients also die without being intubated. In those cases, the other arguments presented here will have to suffice.
What then of the family? They are conscious, and the harm done to them could potentially reverberate for years to come. And familial rights are certainly recognized in medical ethics, at least when it comes to surrogate decision-making. Perhaps it is their right that is stronger. But, whether or not it is stronger, it cannot be absolute. For, there is a very simple case where a hospital may, and must, keep out such a visitor—at the patient’s request. Likewise, if the family member has behaved badly, even to the staff, during prior visits. This is of course not what is happening here. However, it does show that the family’s right to visit is defeasible.
These, then, are the rights in question. What I have shown thus far is not that they do not exist here, just that they may not be as solid as they at first appear. The next question is, how should we approach rights during the time of a pandemic. Traditionally, ethical analyses can be broken into two types, consequentialist, or outcomes based, and deontological, or rules based. A consequentialist, or utilitarian, decides whether an action is right based on the outcome that results—did it create more good in the world than the alternative? A rules based ethicist sees whether an action follows certain ethical rules—thou shall and thou shalt not—without looking to see what the impact is of following the rules in a given case. But that dichotomy is a bit misplaced here. Even a deontologist, a rules-based ethicist, may have rules that take into account outside impacts. So to have a specifically rules-based argument that visits to the dying is a right at this time, one would have to have a rule that implied that not only was it a right, but that it was a more or less absolute, first-tier right that no amount of bad consequences could override. I have trouble seeing this in general, and certainly in light of the arguments made earlier.
That was a bit quick I am afraid. The main point was just to argue that we need to analyze the ethics of our dilemma, as to whether the public’s interest in social distancing outweighs the patient’s right not to die alone and the family’s right to be with their dying relative, based on the real world consequences of taking one side or the other, and not based on abstract, timeless rules. Therefore, we are left considering the consequences of allowing or not allowing visits to dying patients during the COVID pandemic.
Ultimately, answering this question requires objective data, or at least assumptions about such data, about the risk to visitors of acquiring COVID (and then also perhaps spreading it to others) and the risk of their already having COVID and spreading it within the hospital. This is information that I do not have. It also depends on the organization of the intensive care units and the potential for disruption visitors could create. I know that at our hospital at Columbia, operating rooms have been converted to intensive care units, so that in addition to the MICU, or medical intensive care unit, and SICU, or surgical intensive care unit, etc., we also now have an new beast called the ORICU, operating room intensive care unit. These do not necessarily have the same space and barriers that normal intensive care units have, and may have less room for extra people in them.
How could one use this information to make decisions here? Certainly, if wearing a simple mask is enough to prevent getting or spreading infection, then the danger to the visitor, the other patients, and to society at large is not a real issue, and is not a reason to forbid visitors. Of course, we do not know this to be the case, and so this danger must be considered. Given the degree of disruption to everything else that our assessment of the risk from COVID is causing, it is not unreasonable (though not necessary) to take a conservative approach here too. Note that the risk to the visitor is only part of the issue here, and so we cannot simply leave it up to them to take on the risk or not.
But even if the risk of virus transmission is small, the disruption to the intensive care units, and especially the makeshift ones, could be real. And I think that there is an argument to be made that if some intensive care units cannot have visitors, none should. At the very least having different policies for different units would lead to arbitrary distinctions between patients, and at the worst it could lead to placing patients in preferred intensive care units for nonmedical VIP (“Very Important Person”) reasons, which is certainly unjust.
Thus, I think that while keeping visitors away from dying patients is certainly a bad thing, it is not an absolute wrong, and may indeed be justified at times, perhaps even now. We broadly restrict rights during public health emergencies, and the right to visits is not stronger than others, and is perhaps weaker than some of the even more fundamental rights, such as engaging in religious worship and commerce, that life under COVID has, of necessity, interfered with. Nonetheless, if it is possible to have a safe, nuanced policy, with small numbers of visitors to those patients who would benefit from it, this is certainly desirable.
Any philosophical analysis of difficult human issues is in danger of losing the human, even when the analysis is rooted in the real world. Without pulling back from the somewhat difficult conclusions I have presented, I would like to pair them with a quotation from Rodrigo Marquez. Marquez is the son of the novelist Gabriel Garcia Marquez, author of Love in the Time of Cholera , and the quotations comes from a column he wrote as a “letter” to his late father, describing the pandemic to him. He says: “It’s not just death that frightens us, but the circumstances. A final exit without goodbyes, attended by strangers dressed as extraterrestrials, machines beeping heartlessly, surrounded by others in similar situations, but far from our people” (59).