Defining Death: Four Decades of Ambivalence

By Sharon Kaufman, Ph.D.

The case of Jahi McMath, the 13-year-old girl declared brain dead at Children's Hospital Oakland on Dec. 12, is but the most recent example of a 40-year-old national perplexity and the controversy that it is capable of unleashing.

In 1975 a young woman who had fallen into an unexpected coma moved the topic of medical decision making about death out of the sequestered world at the hospital bedside and into the public domain. Her name was Karen Ann Quinlan, and she lay tethered to a breathing machine for months in a New Jersey hospital. Her condition on that machine -- unresponsive but not dead -- became a media focus and a landmark court case. The events surrounding Quinlan ushered in a deep-seated confusion about what death is, when it occurs and who says so, and that confusion has only intensified in the intervening decades.

Karen Ann became famous when her parents, after months of deliberation, soul searching and discussions with their priest, sought to have her removed from the mechanical ventilator that was enabling her to breathe, thus keeping her alive. When Karen's doctor and the hospital administration refused to disconnect the machine, fearing criminal prosecution or other sanctions, her parents petitioned first the Superior Court of New Jersey and then that state's supreme court to have it withdrawn. The supreme court eventually ruled in favor of the Quinlans.

I often speak with medical students and young doctors, and it surprises me that few of them have heard of the Quinlan case, for the medical events that enabled both her situation and the overarching question about who gets to define death continue to emerge on the public stage from time to time. And each time they do, our country's ongoing bafflement about death is highlighted once again.

When Karen Ann was placed on a ventilator, the so-called "breathing machine" had only recently become standard equipment in U.S. intensive care units. Developed years earlier, and originally intended to keep patients breathing during surgery, its use had rapidly expanded by the late 1960s.

Quietly and without any public fanfare, the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death was formed in 1968 to respond to two new technologies: the mechanical ventilator and organ transplantation. The problem at hand was how doctors could keep organs viable and legally transfer them from one body into another. To solve it, the committee created a new definition of death: brain death. With this new definition, a person could be declared dead while the internal organs could be kept viable by machines at the same time.

The ventilator opened the realm of organ transplantation beyond anything previously imaginable. But while brain-dead persons (i.e., persons without brain function) could be maintained on the machine, brain death was problematic from the start, largely because the distinction was never clear between the clinical criteria used to make a diagnosis of death and an agreed-upon definition of death. Historically, the defining (i.e., diagnostic) features of death were the absence of breath and heartbeat -- features that anyone could note, but this was no longer the only criterion, or even the correct one. It had become one of two correct criteria.

Troubling ramifications of the new "brain death" definition soon began to ripple through the medical community. How to speak about that condition to families? Were persons on ventilators really dead? How dead were they? Brain-dead persons connected to these machines do not look dead, which causes some families and health professionals unresolved distress. Rather than clarifying the moment and condition of death, the whole notion of brain death has the ability to make death much more indeterminate and troubling.

Beyond the issue of defining death, another set of problems arose: What should one do about death, and who gets to decide? The Quinlan case contributed to the emergence of health care consumer activism. It also brought medicine together with the language of rights, ethics, public policy and the law. With Quinlan, death became a matter of deciding when she -- or anyone in her position -- should be declared dead. In the years since Quinlan, citizens have increasingly demanded a say in that decision.

Profound public emotions accompany the tragic medical stories that become headline news from time to time and generate intense debate about control over death. The intense debate has become more routine in American society because death has become a negotiated decision that is fraught with political meaning.

What can we learn from these stories? How can we develop a clearer understanding and acceptance of death? As first steps, families need to comprehend both what the medical ventilator can do and what its limitations are. Doctors need to talk with families, to continue to provide them with compassionate care during and, perhaps most importantly, following the death of such a patient. And because a ventilator-tethered patient looks so alive, a simple declaration of death is no longer enough. Finally, medical schools need to give higher priority to teaching the communication skills that doctors will increasingly need as they confront the vortex created by unexpected death, complex technology, and the threat of litigation.

These suggestions are not new, but our opportunity to act on them is renewed by each new medical case that embodies our public anxiety about the technologies of death. Neither the ventilator nor patient and family rights nor the role now played by the law and by families' religious beliefs can be put back into Pandora's box. And so we are left with a pivotal question: Do we want death to be decided by the courts and by individuals' faith or demands, or do we want our understanding of it to remain firmly connected to the domain of medicine?

Sharon Kaufman is Professor and Chair of the Department of Anthropology, History and Social Medicine at the University of California, San Francisco. She has conducted research for 25 years on medicine, the end of life, and the social impacts of advanced medical technologies in an aging society. She is the author of ...And a Time to Die: How American Hospitals Shape the End of Life.