Our patient—we’ll call him W.B.—is a 56-year-old father of three who, until last year, had always been healthy. He had worked his entire life, in jobs ranging from automotive repair to sales, taking great pride in providing for his family, even though doing so had recently meant combining three part-time positions. All of that ended in February 2014, when he was diagnosed with amyotrophic lateral sclerosis, or ALS, commonly known as Lou Gehrig’s disease. A neurodegenerative disease characterized by progressive muscle weakness, ALS leads to the loss of all voluntary movement, difficulty breathing, and, in the end, death.
W.B.’s life was turned upside down by the diagnosis. But once the initial shock passed, he began researching his condition intensively. He learned that he was unlikely to survive five years, and that in the meantime his quality of life would diminish dramatically. With limited options, many patients retreat. But, quite bravely, W.B. had other ideas. After much consideration, he decided that if he was going to die, he would like to try to save another person’s life in the process, even if that person was a stranger. And so last May he approached the University of Wisconsin’s transplant program, where we are surgeons, as a prospective organ donor.
Initially, W.B. had assumed that he would arrange for his organs to be procured when he died, but then he read that kidneys from a living donor work better and last longer than kidneys from a deceased donor. For one thing, the death process takes a toll on organs, between the decreased flow of blood and oxygen and the release of inflammatory proteins. For another, kidneys that are removed after death inevitably endure “cold time”—when they are outside the body, on ice, without any blood flow at all.
“Why not fork out a kidney before it becomes compromised by all the meds I am taking?,” W.B. asked us when we met him in June. But he didn’t stop there. Beyond a kidney, he explained, he wanted to donate the rest of his organs once his condition deteriorated so much that he could no longer breathe on his own.
W.B. spoke calmly about his situation, and about how ALS “steals your ability to do things”; already, he told us, “I have a hard time getting a spoon from a bowl to my mouth.” He knew that in the near future he would be confined to a bed or a wheelchair. As for the end of his life, he remarked that he could only “look forward to suffocating.” When he said this, he didn’t seem sad so much as at peace with his coming death. “It is what it is,” he said. “I can’t change it. I probably won’t be here in five years. To be honest, I may not be here in two years.”
W.B. hoped to turn his tragedy into someone else’s miracle. But although his mind was clear and his intentions unmistakable, we had no choice but to disappoint him.
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.
The more difficult issue relates to his other organs. W.B.’s prognosis is poor: his doctors indicate that in the near future, he will no longer be able to breathe for himself, and will need a tracheostomy and a ventilator to live. At this point, some ALS patients forgo further life support and succumb to their disease. But there is currently no way to end one’s life in this manner without jeopardizing one’s organs and, with them, the chance to save other lives.
Organ transplantation is still relatively new. When the first successful kidney transplant (between identical twins) was performed, in 1954, the procedure was quite radical; the surgeon, Joseph Murray, would win a Nobel Prize for his work. Transplantation of kidneys from deceased donors had limited success until the early 1980s, when a new drug, cyclosporine, made it easier to suppress recipients’ immune systems.
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. Though all three donors went on to die, no transplants resulted. In our experience, when organ donation works, families view it as a positive end to a tragedy. Our team remembers vividly the case of another ALS patient, a young father of three teenagers. Although his muscles had failed him, his brain was entirely intact. He knew that he would never get off a ventilator, and he also knew that his organs could allow several other people to go on living. He wrote out goodbyes to his wife and children, they hugged him, and then, with his family surrounding him, his doctors removed his breathing tube. Once he had taken his last, labored breath, our team rushed him into the operating room. We were just in time to recover his kidneys and liver. In the midst of their heartbreak, his family was able to find some comfort in the idea that their husband and father had died heroically, saving three people’s lives.
Unfortunately, not every withdrawal of life support ends with this victory. We also remember a young boy who had suffered major head trauma and whose breathing tube was recently removed while his mother held him. (Identifying details have been changed to protect the family’s privacy.) Because the boy’s family believed deeply in organ donation, they had made the difficult decision to have life support withdrawn in the cold, sterile environment of an operating room. While our team waited in the wings, the boy died in his mother’s arms. But to everyone’s great distress, he didn’t die quickly enough to allow for the transplantation of his organs. This came as a particularly terrible blow to his parents, who had hoped that their loss might prevent someone else’s. How can an outcome like this be ethically desirable?
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.
Some may argue that such a model could compromise doctors’ care of critically ill patients. People who distrust the health-care system sometimes make similar arguments, accusing physicians of providing lesser care to those who have signed up to become organ donors. In practice, though, a donor’s doctors have little connection to those involved with organ recovery, precisely so as to avoid any conflict of interest. We can’t imagine a scenario in which doctors would give a patient inferior care so that her organs could be procured.
Large numbers of hospital patients have no chance of meaningful recovery, including many patients with progressive neurological diseases or severe cardiac disease, as well as many stroke victims. Yet lots of them desperately want to save the lives of others. These courageous people—and their families—desire a legacy in the form of organ donation; they wish to commit a final act of pure heroism. But even as the transplant waiting list stretches more than 120,000 patients long, the current system denies them this legacy.
As doctors, we are taught to do no harm. It may be time to redefine what we really mean by harm.
When we sent W.B. a draft of this article, we were nervous about how he might react. What can it be like to read a magazine article about whether your own organs should come out while you are still alive? But he responded as we should have expected, calmly and thoughtfully. His e-mail read: “I can no longer type so I am using the voice command module on my tablet. This means that sentence structure, grammar and punctuation kind of go out the window so bear with me.” He went on to say that he agreed with our main ideas, and wanted only to correct some of the details of his life.
And then, without skipping a beat, he challenged us again to remove one of his kidneys while it still had the best chance of saving a life. Here is what he said (we have left errors in place, as they speak to the deterioration caused by his disease): “I am still interested in seeing if we can move forward with my decision todonate a kidney yes he forces that make these decisions will give you approval.” (In a separate e-mail, W.B. explained that he’d cleared the idea with his own doctor: “Hi talk to my neurologist regarding a kidney donation, he thought it was a great idea and that I would survive the surgery without any major issues.”)
To his great disappointment, we informed him again that he is not a candidate for living donation. But we are still haunted by W.B.’s request. As he prepares to die, the thing he wants most is to save the lives of strangers. To that end, even in his debilitated state, he is willing to endure major surgery.
In our last conversation with W.B., shortly before this article went to press, he told us that his disease was progressing faster than expected. He asked us what he could do to keep his organs oxygenated, so that they could remain viable for transplantation. He had not planned on having a breathing tube put in when the time came, but he said that he would now consider doing so, if it meant he could still be a donor. And he implored us, once again, to do some more homework and figure out how he could pass on his organs before it was too late.
For months, as we have turned W.B.’s request over in our minds, we have repeatedly come back to one realization: that we are not as courageous as he is. Maybe we will yet find a way to honor his dying wish—or if not his entire wish, then part of it. If we were to help W.B. donate a single kidney, and he survived, the experience might add some real value to his remaining days.
Yes, the operation might take a toll on his body, and he might not come off the ventilator after surgery. But at that point he would still have the option of donating the rest of his organs through the DCD process—or at least, he could try to. Whether his body would cooperate once life support were removed, and die within the appointed time window, is another question.