You walk into a room in the intensive care unit and find a man in his 30s, skin yellow and abdomen swollen with the fluid that accumulates in liver failure. He smiles, even though he is almost always uncomfortable, even though he has not left the hospital in more than a month. Family members sit anxiously at the bedside. The nurses stop by just to say hello.
Without a liver transplant, he will die. Imagine that you are on the committee charged with deciding who gets a transplant. Would you add him to the list of patients waiting to receive organs?
Now open the chart. This is what you’ll see: an unemployed man with a history of untreated anxiety and depression and a recent descent into alcohol abuse. Months of binge drinking have destroyed his liver.
Your job on the transplant committee is to determine whether the patient will realistically comply with the rigorous post-transplant regimen and remain healthy enough for a transplant to be worthwhile.
Would you list him now?
My hospital declined to add this patient — my patient — to the waiting list for a transplant, but another hospital said it would consider doing so. Transplant committees regularly face complicated cases like these, and they also regularly come to different conclusions. These decisions can be especially thorny when the patient has a mental illness. Whom we choose to list for a limited resource, and whom we choose not to, reveals our biases about who is worthy of lifesaving care.
My first experience grappling with such questions occurred many years ago, during my residency. I was on my I.C.U. rotation when we admitted an older teenager who was in liver failure because of a Tylenol overdose. I had never seen anyone that sick. Her blood would not clot. As the toxins that her liver could no longer filter accumulated, she became more and more confused. Her kidneys failed. It was clear that without a new liver, she would die.
But was the Tylenol overdose intentional? And, perhaps more important, was it a one-time event or part of a long pattern of psychiatric disease? If this act spoke to significant mental illness and risk of suicide, the transplant team would need to worry about whether the patient could reliably take the medications that would keep her body from rejecting a transplanted liver. Her mother tearfully insisted that the overdose must have been a mistake, what is medically termed a “therapeutic misadventure.” But we unearthed a history of depression and anxiety coupled with a recent painful breakup. Perhaps the overdose had been intentional. The patient was no longer aware enough to tell us.
Time was short. Her brain was starting to swell, which is one of the most feared and fatal complications of liver failure. The transplant doctors and the psychiatrist gathered outside her room. They explained to me that some programs would take the leap and list her, but others would not. Medically, she was a perfect candidate. But the psychosocial questions gave them real pause. Ultimately, our transplant team decided to list her. She was young, she had a supportive mother, and she would die otherwise.
Whether to list someone for transplant is one of the most fraught decisions in medicine. To identify the best candidates, programs evaluate patients through two lenses: medical and psychosocial.
From the medical standpoint, the transplant program weighs whether the patient is sick enough that she could die without a transplant, but not so sick with other medical problems (like heart disease, cancer or severe obesity) that she won’t make it through the surgery and recovery.
The psychosocial component is murkier, and this is where I have long worried that bias and judgment of social worth come into play. Here, the transplant committee — which often includes a psychiatrist and social worker — evaluates the patient’s mental health and ability to adhere to the daily medication required after transplant, while also looking into her so-called support system — the people who will care for her after the transplant.
A patient with a psychiatric diagnosis that calls into question whether he will take his meds or show up for appointments might not be listed. It also means that even if someone appears to be a good candidate, but he lives alone without support from family or friends, he can be denied a transplant because there’s no one to help him during his recovery.
But these are not absolute criteria, and I’m concerned that patients who are perceived as more sympathetic by the transplant team — like a young woman with a sobbing mother at her side — might be granted a degree of grace that is not given to others.
In transplants, a key metric for success is whether the patient is alive one year later. This means that a transplant program with a low one-year survival rate could be put on probation or lose its certification. As a result, that transplant program might become more risk-averse in its decisions. On the other hand, a transplant program with a series of successes and higher patient numbers can afford to take on a riskier patient. None of this is visible to the patient or the family.
Some factors that seem absolute do have flexibility. Once, a patient with severe mental illness would have automatically been denied a transplant. However, in recent years, the understanding of psychiatric disease and transplants has evolved. Patients with diagnoses like schizophrenia can be transplant candidates if their disease is controlled enough that doctors trust they will take their anti-rejection meds.
Even so, inequities persist. There are no clear national guidelines for how transplant programs should weigh severe psychiatric disease. A 2017 paper in BMC Medical Ethics noted that while attitudes in the field were changing, there remained significant variability among institutions.
Questions about fairness and medical judgment are especially sharp when it comes to liver transplants for what’s called acute alcoholic hepatitis. For years, most programs required patients be sober for six months before they would be considered transplant candidates. This served two purposes: It demonstrated whether a patient could stay abstinent after surgery, and it would give a patient’s liver enough time to potentially recover on its own. But for some patients with particularly severe alcohol-related liver damage, waiting six months meant death.
In response, some transplant programs started making exceptions. They offered transplants to carefully selected patients with strong social support, clear insight into their disease and a commitment to rehabilitation. The data suggested these patients could do well after transplant, challenging old standards.
But all these criteria require judgment calls. In the case of the young man I cared for in the I.C.U., our transplant program said no. His commitment to stop drinking and the contribution of his psychiatric diagnoses were too uncertain. The risk was too high. But when doctors on his medical team called other transplant programs throughout the state it found the
other hospital that said that it would be willing to evaluate him.
The patient’s family asked me: How could two sets of clinicians with the same set of facts reach such different conclusions? I did not have a satisfactory answer.
There should be protocols to make sure that patients who are rejected for transplant at one hospital are referred to another potential transfer center. At my hospital, we are discussing how to standardize this. Patients who might benefit from a second look should get one. That shouldn’t depend on chance or whether their doctors are willing to keep searching on their behalf.
Too often, human nature and bias can shape these decisions. Some patients may slip through the cracks because their stories don’t arouse advocacy, while other patients get a second or third chance because a doctor feels compelled to push for them. Their stories resonate with us for some reason. As doctors, we need to recognize that subjectivity can cut both ways.
Back in my residency, I followed my liver transplant patient’s case for months after her transplant. She woke to find that she was partly paralyzed on one side because of a brain bleed that had probably occurred before transplant. She had trouble with her vision.
She attended a few post-transplant appointments, and the notes in her chart were distressing to read. With rehabilitation, she could most likely regain much of what she had lost. But she was struggling with her mental health, asking why we had saved her life, expressing hopelessness about her life after transplant. Then she stopped showing up to appointments. The doctors called, but no one answered. After months, they stopped calling.
For years, I’ve wondered what to take from this story. Was our transplant team wrong? That was my initial response. But I don’t think that’s the conclusion to take away from this. In such decisions, there is no right or wrong. There is only a thoughtful balancing of risk, acknowledging the biases we bring to these decisions and then, the commitment to do whatever can be done to give our patients the very best life possible given their realities.
Sometimes that means that the patients do well. Sometimes they are simply up against too much, as she was. Still, we gave her a chance.
Daniela Lamas, a contributing Opinion writer, is a pulmonary and critical care physician at Brigham and Women’s Hospital in Boston.
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