Wednesday, April 29, 2015

The difficulties of deceased donation by the terminally ill

Two transplant surgeons, Joshua Mezrich and Joseph Scalea at the University of Wisconsin, write in The Atlantic about a terminally ill patient who wished to be an organ donor.

As They Lay Dying--Two doctors say it’s far too hard for terminal patients to donate their organs.

"Two major obstacles have prevented us from helping W.B. The first concerns his desire to donate a kidney while he is still alive. In his weakened state, will he tolerate the anesthesia and surgery? Or will they hasten his death? If he survives the surgery, will he ever leave the hospital?

"As doctors, we have sworn to do no harm. And yet, every Wednesday and Thursday morning, we remove kidneys from living donors. These patients are not getting any medical benefit from donating one of their kidneys—to the contrary, they are accepting a small risk of complications, including hypertension and a slightly increased likelihood that their remaining kidney will fail. But they do experience a very real, if intangible, benefit: the experience of saving someone’s life.

"In evaluating W.B.’s request, we had to weigh carefully not only the risk to him—which W.B. clearly understood—but also the risk that a donor death after surgery would pose to our hospital. Transplant-surgery programs in the United States are scrutinized by an alphabet soup of federal and nongovernmental entities. Centers with worse-than-expected transplant outcomes can be placed on probation or shut down. A single bad outcome involving a living donor can lead to an investigation. While there are good reasons for this monitoring, it can cause surgeons to avoid complicated cases and innovation. If we were to remove one of W.B.’s kidneys, and he died one, two, or even six months after surgery, his death would be a very public black mark on our program.
"From the earliest days of transplantation, surgeons subscribed to an informal ethical norm known as the “dead-donor rule,” holding that organ procurement should not cause a donor’s death. In practice, this meant waiting until patients were by all measures completely dead—no heartbeat, no blood pressure, no respiration—to remove any vital organs. Unfortunately, few organs were still transplantable by this point, and those that were transplanted tended to have poor outcomes by today’s standards.

As the field burgeoned, doctors could see the potential to save ever more lives—if only more organs could be found. In 1968, in an effort to address the shortage of transplantable organs (as well as the delivery of futile care to people in irreversible comas), an ad hoc committee at Harvard Medical School suggested that patients with no identifiable brain function could be designated as “brain-dead,” thereby making them candidates for organ donation. The definition the committee came up with informed the Uniform Determination of Death Act, a model state law drafted in 1980 and subsequently enacted by most states, which holds that brain-dead patients are legally dead. Under the new state laws, doctors could remove organs from patients whose hearts were still beating without violating the dead-donor rule.

Although the dead-donor rule is ostensibly a fine standard, it doesn’t address the situation of most people who are terminally ill. Nor do the laws regarding brain death. Today, terminally ill patients’ best—in many cases, only—chance of passing on their organs is via a wrenching process known as donation after circulatory death, or DCD, whereby a patient’s doctor withdraws all life support while an organ-recovery team stands by. For organs to be successfully transplanted this way, however, the donor typically needs to die within an hour or two of being taken off life support—otherwise, decreased blood flow leaves the organs unsuitable for transplantation. Even when DCD organ donors do die in the allotted time, we tend to recover fewer organs from them than from brain-dead donors, whose bodies aren’t subjected to this drawn-out process.

Over the course of a single week while we were writing this article, three potential DCD donors at our transplant center had life support removed with the intention of donating their vital organs, but failed to die quickly enough.
"When the term brain death was introduced half a century ago, it was meant to provide an objective legal definition for a group of patients whom we might otherwise describe as “unrecoverable.” Of course, we also recognize as “unrecoverable” many patients who do not meet the standard for brain death. Those who have suffered devastating strokes or heart attacks, or who have sustained major head trauma, may not be brain-dead even though they have brain injuries that render them unable to survive without life support.

"A more useful ethical standard could involve the idea of “imminent death.” Once a person with a terminal disease reaches a point when only extraordinary measures will delay death; when use (or continued use) of these measures is incompatible with what he considers a reasonable quality of life; and when he therefore decides to stop aggressive care, knowing that this will, in relatively short order, mean the end of his life, we might say that death is “imminent.” If medical guidelines could be revised to let people facing imminent death donate vital organs under general anesthesia, we could provide patients and families a middle ground—a way of avoiding futile medical care, while also honoring life by preventing the deaths of other critically ill people. Moreover, healthy people could incorporate this imminent-death standard into advance directives for their end-of-life care. They could determine the conditions under which they would want care withdrawn, and whether they were willing to have it withdrawn in an operating room, under anesthesia, with subsequent removal of their organs."

HT: Frank McCormick

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