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January 10, 2014 | Posted By Wayne Shelton, PhD

The case of the 13 year-old California girl, Jahi McMath, declared brain dead following a tonsillectomy has created another media frenzy. This is truly a tragic story. Apparently Jahi underwent tonsil surgery and two other procedures on December 9, 2013 to help her better manage sleep apnea. Following the surgery she was awake but shortly thereafter went into cardiac arrest and was placed on a ventilator. By December 11, physicians made a medical determination of brain death.

From the parent’s point of view, one can only imagine the shock and disbelief they have been experiencing. Their young child went to a major medical center where highly skilled physicians were going to perform what was assumed to be relatively low risk procedures. Jahi had apparently had some worries herself about not waking up following anesthesia. Like all supportive, loving parents they assured she was in good hands and no doubt reminded her of how important it was to have these procedures done in order to deal with what could be a life threatening medical condition in sleep apnea. They fully expected she would be fine and return to normal. Instead, she is on a mechanical breathing machine, which is supporting her breathing and heartbeat, and her physicians now say she’s dead.

From the outset the parents refused to accept the determination of brain death and wanted life support to continue. But to provide long-term support for a patient on a ventilator, it is necessary to perform a tracheostomy and a gastric feeding tube, both of which require relatively minor surgical procedures. These procedures would require a surgeon to perform them; the hospital refused to provide these procedures saying it would be unethical to provide long-term support for a corpse. The court, to which the parents had appealed for relief, did not require the hospital to perform those procedures but did permit the parents to have control of the body and move her to another location. Presumably at the facility to which she has been transferred, these procedures will be performed so as to allow machines to continue to sustain physiological effects that the parents construe as life.

It is crucial that we get a clear perspective of the facts. Once a determination of brain death has been made conclusively, according the whole brain death standard, a human being is no longer able to self-regulate itself as an individual biological organism. This is unlike other medical conditions such as minimal brain activity where patients have some lower brain activity and can breathe on their own, digest food, etc. Whole brain death is a sharp biological marker since it entails the permanent and irreversible loss of all brain activity, which was the condition of Jahi. This means that even on life supports, her body will break down, including her skin and organs and eventually the ventilator will no longer work. There are no good data on how long this might be because after brain death the norm is for mechanical support to be withdrawn. Thus there are very few if any cases of life support continuing for a brain dead patient. Jahi was a young girl so it is possible the time period would not be short, i.e. days, as it probably would be for an older, sicker individual. But in speaking with neurologists and physicians, my guess is the time period in which Jahi’s body can be supported mechanically will not be many months and certainly not years.

But what about the family’s belief that Jahi is alive and their wish to keep her body maintained mechanically for as long as possible? What are we to make of their wishes? Is it is ethically prudent and practically feasible to have multiple views of death based on individual conscience? Professor Robert Veatch thinks so, as he states in a recent editorial, “…people like Jahi's parents should have the option to record their conscientiously held positions and allow pronouncements of death to be based on those beliefs…That would mean Jahi could be classified as alive if that is what her parents choose.” Veatch has long argued for a more flexible way to determine death consistent with the wide range of values and philosophical understandings of death in a pluralistic society. This view by the way would also entail that a patient who was determined to be in a persistent vegetative state (PVS) may be understood as dead on the basis of a higher brain standard of death. According to the higher brain standard, which has been proposed but not accepted in the U.S., once a human being loses higher brain function they lose the portion of the brain that makes them essentially human, such as the ability to interact socially; and since they lose the essential characteristics of being human, they are, in effect, dead. Thus a patient who is dead according to this standard may be supported for decades by artificial life support since the patient still has some minimal, lower brain function that enables the body to self-regulate itself biologically.

In this brief blog I can only say that I am highly skeptical of such a broad and flexible understanding of death. To start with, if a patient through the expression of prior wishes or from the directives of a legitimate surrogate wishes to understand death as resulting from the loss of higher brain function, they are perfectly free to withdraw life support for the patient’s purely biological functions. The prevailing whole death understanding of death does not limit their ability to define death on their own terms. But case likes Jahi are much more difficult to accommodate within Veatch’s perspective.

A patient who has been determined to be brain dead according to the whole brain standard is left with a body that cannot maintain itself and unlike a minimally conscious patient, mechanical support will eventually fail. Veatch agrees rightly that Medicaid and insurance companies should not bear the costs of such mechanical support. This means that private donations must be sought to pay for medical services. Furthermore, it means that some healthcare individuals must perform medical procedures on the body and provide daily support until the body wears out entirely. Presumably, each family desiring life support in such a position would have to seek the support of financial supporters and if they failed, as some perhaps most would, medical support would be terminated. This does not seem viable as a policy to me if for no other reason than fairness.

I do not have a conclusive moral argument to say that it is wrong to provide medical support for a human corpse, just as Professor Veatch does not have such an argument to justify doing so. Both of our perspectives are grounded in prudence and regard for those involved. My main point is that the whole brain death standard is a profound biological marker that should indicate, as it always does, that medical support should be withdrawn. To do otherwise is to no longer care for a patient, but to provide false hope for the family and in effect to make them the patient. There are more effective ways to show our compassion and support.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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