A Tragic Death and a Fight for Life

L. Syd M Johnson argues for the accommodation of religious and moral objections to declaring death according to the whole brain death criterion. 

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All fifty US states, and all Canadian provinces and territories, legally recognize whole brain death – the irreversible cessation of all functions of the brain – as death. While the criteria and tests for determining whole brain death are fairly straightforward, the concept of whole brain death is not. With ventilation and tube feeding, the brain dead body can be maintained for weeks, months, or, in rare cases, years. Indeed, brain dead bodies are routinely maintained on cardio-pulmonary support so that viable organs and tissue can be harvested for life saving transplants.

The traditional, universally accepted definition of death is cardiac death: the irreversible cessation of circulatory and respiratory functions. Every US state has adopted a Uniform Determination of Death Act that allows death to be determined by either cardiac or whole brain criteria. Cardiac death is uncontroversial – the heart does not beat, the lungs do not breathe, and before long, the body grows cold and stiff. One way or another, we will all eventually succumb to cardiac death, and will be undeniably, irreversibly, and without question completely dead. And just as surely as every heart will someday be stilled, we will all one day be neurologically dead, for when the heart stops, before long, so too does the brain.

Gabriel Metsu, Rijks Museum

Gabriel Metsu, Rijks Museum

Medically, and legally, there is no coming back from whole brain death. The brain dead stay dead, even if their warm bodies and beating hearts suggest otherwise. But not everyone accepts whole brain death as a valid definition of death. Physicians, philosophers, religious leaders, and many others question the use of current neurological criteria for declaring death. Robert Truog calls whole brain death an incoherent and counterintuitive concept, and argues for a return to the cardio-pulmonary definition of death. Indeed, there is considerable evidence that whole brain death is, at least, a misnomer, as the brain dead sometimes evince not only the essential functions of a living biological organism, but maintain some neurological activity as well. Whole brain death may be well established (and entrenched) as a matter of law, but the matter is hardly settled.

Jahi McMath’s parents do not accept that their brain dead daughter is dead. Jahi was a thirteen-year-old girl who in December 2013 entered Children’s Hospital in Oakland, California for a tonsillectomy for the treatment of sleep apnea. Following serious post-surgical complications, including uncontrolled bleeding, her heart stopped, and Jahi suffered devastating neurological damage. Her doctors declared her brain dead – a diagnosis later confirmed by a court-appointed neurologist – and the hospital sought to remove Jahi from ventilatory support over her family’s strenuous objections.

Jahi’s parents, Nailah and Marvin Winkfield, are devout Christians who believe that so long as her heart beats, their daughter is alive. “Her heart is beating, her blood is flowing. She moves when I go near her and talk to her. That’s not a dead person,” said Ms. Winkfield. The Winkfields went to court over the hospital’s decision to remove Jahi’s ventilator, a decision they have characterized as an attempt to kill their child. They requested surgical implantation of breathing and feeding tubes to facilitate moving Jahi to another facility. The hospital refused, with the Chief of Pediatrics stating that “Children’s Hospital Oakland does not believe that performing surgical procedures on the body of a deceased person is an appropriate medical practice.”

The hospital had a death certificate issued, and after considerable and rancorous legal wrangling, and a court injunction barring removal of the ventilator, released Jahi’s still breathing “corpse” to the county coroner. Her family then moved her to an undisclosed facility for continuing care.

The hospital has the law on its side. Jahi is dead, so far as the State of California is concerned. Under California law, hospitals are obligated to provide the families of persons declared brain dead a “reasonably brief period of accommodation” – defined as the amount of time needed to “gather family or next of kin at the patient’s bedside” – during which only existing cardio-pulmonary support must be continued. If a family objects on religious grounds to the use of the whole brain death criterion, the hospital must “make reasonable efforts to accommodate those religious and cultural practices and concerns.”

Oakland Children’s Hospital surely met its minimal, legal obligation to provide “reasonable accommodation” to Jahi’s family, even while it consistently (some might say cruelly) referred to the child as “a deceased person” and a “dead body,” and threatened to unilaterally withdraw ventilation against her family’s wishes.

The law may be on the side of the hospital and doctors in Jahi’s case, but morality and common decency are not. There is nothing unreasonable or medically unsound about the cardiac definition of death – it is used all the time to determine death. It is the definition of death that Jahi’s family accepts – and it’s a definition of death accepted under the law everywhere. If cardiac death is medically and legally accepted, it is surely not unreasonable. “Reasonable accommodation” of moral and religious differences can and should reasonably accommodate the use of a medically and legally acceptable alternative in determining death.

A family has lost a beloved child. There is no doubt about that. Whether Jahi is alive or dead may be in dispute, but she will never be the child she once was. Her family already grieves that loss, as any family would. Medical or legal declarations will not relieve their suffering. Neither will a strong dose of reality – which Oakland Children’s Hospital seemed determined to administer – serve as good medicine in this case. Jahi is beyond harm – she does not suffer from the continuing provision of oxygen and nutrition. She feels no pain, knows no loss. Continuing “life support” in Jahi’s case is the difference, for her family, between losing a child to a devastating medical complication, and losing her to institutionalized murder.

It will cost money – wasted money, many will say – to keep Jahi’s body alive for whatever time she has left. Her family has raised that money through private donations. The hospital used its money and resources to battle Jahi’s family in court, when it could have given them time, and a little compassion, allowing them to come to terms with what has happened in their own way, and in their own time.

Jahi’s parents know that their daughter will not return to them as she was. And they grieve, even if their way of grieving is not medically or legally endorsed, even if it looks like denial. Their grief, too, is reasonable, and should be accommodated.
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L. Syd M Johnson is Assistant Professor of Philosophy & Bioethics at Michigan Technological University @LSydMJohnson

One comment

  1. America has one of the most advanced health care systems in the world. But sadly it also has the greatest disparity of any industrialized nation between those who have a basic knowledge of science and those who have none. In short, the level of scientific illiteracy of the latter group rates below that of some third world countries. As a consequence, a surprisingly large segment of the American population has come to see advanced medical technology, particularly ventilators, as instruments of magic or vehicles through which God performs miracles, including resurrecting the dead. But America’s financially strained health care system can simply not afford to accommodate the wishes of poorly informed parents who will want to bring their brain-dead children home on ventilators. New medical technology has created an unexpected urgency for improving basic science education so that issues of magic and miracles do not gain an even greater foothold in the medical decision-making of poorly-informed parents. http://soul-wisdom.blogspot.com

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