The NIB Forum is pleased to post a contribution from a board member, who comments on a case study from volume 1, issue 1.
“Reasonable Accommodation” for Families of ‘Brain Dead’ Patients
By Jeffrey Spike, PhD
Martin L. Smith and Ann Lederman Flamm published a Case Study in Narrative Inquiry in Bioethics’ first issue (Vol 1, No 1, Spring 2011, pp. 55-64): “Accommodating Religious Beliefs in the ICU: A Narrative Account of a Disputed Death.” It was a careful and detailed description of a woman, Sarah, in her mid-to-late 20s who is left dead by neurological criteria after an apparent un-witnessed cardiac arrhythmia at home. There have been a number of discussions of cases like this, including one I wrote with a colleague over 15 years ago (Jeffrey Spike and Jane Greenlaw, Journal of Clinical Ethics, Vol. 23, No. 3, Fall 1995): “Persistent Brain Death and Religion: Must a Person Believe in Death in order to Die?" The title was deliberately provocative, both in inventing a new term for these corpses that exist in limbo, dead but pink and breathing thanks to a ventilator and drugs to maintain blood pressure, and also deliberate in raising the question of the intersection between personal beliefs (including religious beliefs) and medical realities.
The outcome of the case in Smith and Flamm was described as a deus ex machina: another hospital accepted the transfer of the patient. Thus their article leaves it an open question for others to consider: what should be done in such cases?
Here then are some suggestions. First, it is important to acknowledge, as has been well argued in the philosophical literature for years (indeed, millennia), that a person can be harmed even after they die. Harms (and benefits) include, but are not limited to such subjective experiences as pleasure and pain, or happiness and suffering. Very few people wish to be 'kept alive' (physiologically) in this condition. A few religions have resisted accepting the newer scientific definition of death, and so have (for some commentators) transformed this into a religious freedom issue.
These are difficult and controversial issues. So it is no surprise that few commentators have confronted them. But that is what Smith and Flamm suggest is needed, and so it seems appropriate to bring attention to some proposals already in the literature. Because much of the ethics literature is not documented in PubMed or MedLine searches, there is a danger of progress being set back by each person having to re-invent the wheel. So this Forum piece is meant to let people with an interest in this issue avoid having to spin their wheels: at least you can begin where others left off.
First, Spike and Greenlaw concluded that continuing life-support for the deceased merely to placate the family, that is, without any evidence of the patient's wishes, is insufficient justification. (p. 292). The reason is, in part, that studies have shown that a vast majority of people would not want this intervention, and see the resulting survival (if it can even be called that) as an affront to their dignity. To use my own terms: most of us prefer to be remembered by loved ones for our happy times together, not as an unconscious and dependent corpse in diapers who is visited in a hospital or Long Term Care ‘rehabilitation facility.’
We also addressed the mistaken belief that no harm is done by adhering to the family's wishes. The best philosophical reflection on this issue from Aristotle to Rachels, Veatch, Feinberg, Nagel, and Pitcher all agree that a person can be harmed even after they die. Granted, this is a subtle issue, requiring careful reflection. But few people, after careful reflection, hold otherwise (that once a person is dead, or a person is permanently unconscious, one can do anything one wants to it the person—or corpse--without doing harm). We owe respect to the dead, including the newly dead and the dead who are still on medical equipment whose purpose is to maintain life.
These recommendations might sound cold-hearted, but they are most likely the kindest approach to the bereaved. This is very important to the decision. Most people, when questioned, do want their family's wishes and interests to be taken into account. We cannot ignore that. However in these cases the wishes and interests diverge. As we said in our article: "No one can grant this mother's wish, for her real wish is for the impossible: the return to life of her dead son." (p. 293). When one talks about these issues with the public for years, one senses that most patients would agree to accommodate their family’s wishes, but not for months or years.
None of this proves that there will never be anyone who wants to be kept on a ventilator in a permanently unconscious or deceased state for as long as possible. But that is the exception, the rare exception. It is not our responsibility to adhere to such requests, and that is why most states do not even address the issue, and the few who do leave things ambiguous and only require "reasonable accommodation."
Thus we made some suggestions for reasonable accommodations. For the emotionally distraught family: the patient "should be pronounced dead, and then his family should be informed that all treatment will stop at a certain time (for example, in 24 or 48 hours). They can then choose whether or not to be at his bedside at that time. Their presence is not necessary, though, and their absence should not delay the event (unless they choose a different time of day because of transportation problems). If it adds spiritual comfort, the presence of a chaplain could be arranged, even if the family will not be there. It should constantly be kept clear in communications that the patient has already died, and that all that remains is to disconnect the equipment attached to him." These actions represent responsible fulfillment of the ethical and legal obligation to reasonable accommodation and appropriately respect the family's religious values." (p. 293)
We also stated that we believe that Medicaid and private insurance should not be expected to pay for any care after a patient has been declared dead. We did suggest, however, if a group (e.g. Orthodox Jews) want such treatment, then insurance companies might offer an insurance rider for additional cost to cover the cost of such continued treatment. This might also include long-term care for PVS patients. Even then the number of patients would be low enough that the rider would not be prohibitively expensive. But it would be fairer than making everybody subsidize a religious belief that is neither medically nor ethically justified, and more importantly would give caregivers more certainty that the patient actually wanted this treatment. Having evidence that the patient wanted this would help address the moral distress created by keeping a corpse on a ventilator, sometimes until they begin to rot and smell.
Lastly, we addressed the issue of miracles. This is a frequent refrain one hears in hospitals. And it might intimidate some ethicists as well as many doctors. Does being ethical and culturally sensitive mean we must bow to the beliefs of every family? We suggested that most references to miracles in these contexts are actually "an admission that the odds are very long and that the petitioner is emotionally overwhelmed. It is not time to retreat out of fear of theological depths beyond the reach of doctors' understanding. ...it may be an invitation to talk realistically and to give the family direction." (p. 294)
One sometimes hears the plaint that ethics relies too much on the Principle of Autonomy, and has deserted families in need of kindness, understanding, patience, and a recommendation based on their best interests. I have never been convinced that Autonomy should be such a bogeyman, if indeed any of these accusations about physicians are valid. But regardless of the cause, the answer is not to let families make terrible decisions that will, in truth, only lengthen their period of grieving (potentially by months or years). Keep the focus on what the patient would want, given the medical realities. The answer, given by intensives every day in ICUs, is to listen patiently and then advise wisely. Give the family as much time to prepare as possible (i.e. as soon as you suspect death has occurred or is imminent), and then give them as much emotional support as possible (i.e. having a Chaplain or Rabbi at the bedside when the ventilator is turned off).
Those ethicists who wish to gain the benefits of "Narrative ethics" should not be afraid to make normative recommendations. The word "narrative" need not mean "descriptive." I would rather see narrative taken to mean giving a fuller picture of the persons involved, so we understand them better before we make recommendations. But the purpose of getting to know them better--the "narrative"--is to make better recommendations--the "ethics."