Boston — He survived COVID-19, but his lungs were ravaged. After months of deep sedation, he is delirious, his muscles atrophied. And this 61-year-old still cannot breathe on his own.
He was first intubated just after the winter holidays. Now, when he fully wakes, he will see that he is still attached to the ventilator by a tracheostomy tube in his neck. Slowly, he will come to learn that catheters the size of garden hoses are connecting his body to another device, a large extracorporeal membrane oxygenation machine that has taken over the work of his failed lungs.
Gently, his doctors and family will tell him that his lungs are never going to recover, and that this machine is a bridge that will help keep him alive until he can receive a transplant. If it turns out that he is not a transplant candidate — if he cannot build up enough strength, or if he develops a catastrophic new infection or organ failure — the machine will eventually be turned off. And he will die.
He is not alone. Here in my hospital, we are caring for a new population of patients who have cleared the virus but are left with severe lung disease, trapped on ventilators and lung bypass machines.
Some will continue to improve over time. But for those who do not, a handful of hospitals throughout the country have started to consider one of medicine’s most aggressive interventions: lung transplant. These transplants are already raising thorny ethical questions about equitable access to a scarce resource, and how we define a good transplant candidate, — for which we do not have any easy answers.
Even considering patients like mine as recipients of new lungs represents a paradigm shift. A lung transplant is an arduous procedure, one that a very frail patient has little hope of surviving. And given that lung transplant programs are evaluated based on one-year mortality, they have a disincentive to take a chance on sicker patients.
As a result, transplant centers prefer recipients who are sick enough that they could die without new lungs, but functional enough to visit the clinic. Often these are people with progressive diseases such as cystic fibrosis or interstitial lung disease or emphysema, who have the time to weigh the burdens and benefits of transplant. They can consider the requirements of post-transplant life and mobilize friends and family to commit to being part of the three-member support team that many centers require for lung transplant listing.
Life after a lung transplant — particularly in that first year, and especially for patients who are sicker going into it — can include a cascade of complications, of delirium and infections and kidney failure. And even for those who make it through that first year, the average survival is six years, the shortest of all solid-organ transplants.
When asked whether they want to receive a transplant after considering all the implications, many will say yes. But others say no.
When I was in training just a few years ago, it would have been inconceivable to begin evaluating patients who had never before considered transplant and were deeply sedated in an intensive care unit, anguished family members making decisions on their behalf until they can wake up. But that is what we are doing now.
Try to imagine: You go to the ER with a cough. You’re not even sure that you will be admitted. Days later you are intubated. Consciousness ceases. A month or two pass and then you wake up with hoses in your neck and you learn that transplant and all that comes with it is your only option to stay alive.
How does someone who has never known what it is to have a chronic disease, whose only frame of reference is a healthy life before COVID-19, come to terms with this reality?
These questions are only going to become more immediate. We are seeing the first wave of COVID lung transplants, caring for patients who are on the cusp of death, for whom transplant is the only option to live. But a larger second wave is coming, this time of coronavirus survivors who have made it out of the hospital but are left with lungs that are irrevocably scarred.
Given the racial and economic demographics of severe COVID-19, these men and women are more likely to come from vulnerable communities and might not find their own way to a transplant center.
So not only do we have to learn how to educate and set realistic expectations about transplant for previously healthy people, we also must make sure that they are referred to transplant centers for evaluation in the first place.
Moving forward, this means that we will need to educate doctors in the community, outside of large academic centers, who simply might not think of post-COVID patients as candidates for transplants. And once these patients come to my hospital’s transplant center, figuring out how best to care for them as they set out on this path will mean acknowledging the barriers in our system of lung transplant evaluation, barriers that might inadvertently deepen the inequities this virus has brought to the fore.
Take, for example, our transplant center’s requirement for three people to make up a support team. No one can survive the physical and emotional toll of transplant without assistance, especially in the first year. But not everyone is lucky enough to have people who can commit to helping with medications and appointments. Will we choose not to list someone whose family members live in a different state? How about a patient who would be an ideal candidate but simply lives an isolated existence?
And even if a patient is approved for a transplant, the process — like any protracted hospital stay — can bring with it unanticipated out-of-pocket expense. While the procedure itself and required medications are typically covered by private insurance or Medicaid, patients who live far from a transplant center and need to drive back and forth for appointments might have to incur the cost of an overnight stay just to be seen by their doctors. Even the simple act of parking at a hospital can cost hundreds of dollars each month, a largely unseen drain on patients and families who are already struggling simply to exist.
Even as we prepare for this next wave, my 61-year-old patient and his family continue to wait. Standing at his bedside, I am struck by the reality that if his son had not pushed for him to be transferred to a hospital that would consider him a potential transplant candidate, if we did not have access to the machine that could make it possible to reach that goal, he surely would have died.
Maybe he still will, his family’s grief only protracted. He is just at the start, and we cannot yet know whether he will even make it to transplant, nor what will happen if he does. But he has a chance.
When Dr. Nirmal Sharma, the medical director of transplant at my hospital, first talks to patients and families like this one, he asks them to imagine themselves at the base of a mountain.
“If we look up at the mountain, we grow overwhelmed and feel that we are going to fail,” he tells them. “So we don’t worry about the peak. We focus on the individual steps. There is still no guarantee. But we’re going to attempt. That’s all we can do.”
Daniela J. Lamas, a contributing opinion writer for The New York Times, is a pulmonary and critical-care physician at Brigham and Women’s Hospital in Boston.