When the Treatment of Last Resort Becomes a Life in Limbo

Francia Bolivar Henry was going to be the miracle patient. A pastry chef in her 30s with a captivating smile, she was funny and kind, loved Missy Elliott and chocolate souffle. Even as she battled a life-threatening disease, trapped in the intensive care unit while hooked to a machine that had taken over the functioning of her lungs, she found moments of joy. Once you met her, it was hard not to believe that she would beat the odds and survive.

That‌’s what struck me when I cared for Ms. Henry in the intensive care unit one weekend late this past spring. She had been admitted to Brigham and Women’s Hospital in Boston, where I work as a critical care doctor, more than a month before, with a collapsed lung that would not reinflate and severely low oxygen levels. Though for years she had suffered from sarcoidosis — an inflammatory disease that can affect the lungs — it was still a shock when the doctors told her that the damage was so extensive that a transplant was her only option.

After all, she had been working right up until the lung collapse. She and her boyfriend of four years were making plans for the future: ‌He was waiting for the perfect moment when he could propose to her with a “big old ring.” He thought they would have time.

But ‌‌here she was, now on the ventilator with a tracheotomy tube in her neck, able to communicate only by mouthing or texting. Still, on the morning I met her, she greeted me with a bright smile and told me she was guiltily hoping that a holiday weekend would mean a better chance of transplant offers. Later that day, I watched as she walked laboriously through the unit, ventilator tubing trailing behind her, ’90s rhythm and blues playing from her smartphone. She would walk every day, no matter how much it exhausted her. She knew that if she became too weak, she could be taken off the transplant list.

Weeks passed. She waited, her family visited, she walked. But without a transplant offer, she began to suffer complications and became sicker. Her lungs worsened, and despite deep sedation and paralyzing medications, even the ventilator was not sufficient. Her only chance to stay alive long enough for a transplant was another machine that would completely take the place of her destroyed lungs, a device called extracorporeal membrane oxygenation, or ECMO.

Surgeons would place two catheters the size of garden hoses in the large vein in Ms. Henry’s neck. One catheter would siphon the blood out of her body, run it through a machine next to the bed that would add oxygen and remove carbon dioxide, before returning the blood to her body through the other catheter. In contrast to the ventilator, which still uses the lungs somewhat, this machine takes the lungs out of the equation entirely.

Though it has been used for lung and heart failure for decades, ‌‌ECMO came into the public eye more recently during the first wave of the pandemic as a last-ditch intervention for the sickest patients with Covid-19, whose lungs were so destroyed that they needed time on lung bypass to recover. Since then, ‌‌its use has increased in patients waiting for heart or lung transplants, and for those with respiratory failure because of pneumonia or asthma, a trend that is only anticipated to continue. At my hospital we now have a dozen machines, up from five before the pandemic.

But the decision to begin ECMO is a complicated one, because life on the machine is fraught with danger. Once on the machine, Ms. Henry knew that at any moment, she could have a life-threatening clot, a devastating hemorrhage or a stroke. While those on dialysis for the kidneys or with a ventricular assist device for the heart can live at home for years, as of now there is no such technology for destroyed lungs. While on ECMO, patients cannot live outside the I.C.U. They need constant monitoring, often daily blood transfusions, and the longer they wait, the more complications they face.

Though we increasingly push the boundaries‌‌ with ECMO, it’s ‌not designed for ‌‌long-term use. That’s why doctors talk about the machine as a bridge rather than a destination. It is either a bridge to lung recovery or to transplant if recovery is impossible. This very fact is remarkable.

Patients like Ms. Henry, who would have died without the hope of transplant, are given a second chance at life. But it is a strange second chance, lived under the shadow of an almost intolerable reality‌‌: If transplant or recovery is not possible, then ‌the machine ‌‌becomes what we refer to as a “bridge to nowhere” and ‌has to stop. ‌Doctors make this clear when patients or, more often, their family consent to start ECMO. But can anyone truly understand that unthinkable possibility in the heat of the moment, when they or their loved one cannot breathe and would grasp at any chance at life, as was the case for Ms. Henry? And even if they could, what could they possibly do with that information?

‌Once the sedating medications were stopped, and she woke up on ECMO in June, Ms. Henry‌ was determined to do whatever was necessary for her make it to a transplant, and to continue to find moments of happiness while waiting‌. Though her voice was gone, silenced by the trach tube, her smile was still there. It was what endeared her to even the most hardened nurses, who told her they loved her at the end of their shifts. When she turned 34, the nursing staff took her up to the hospital roof, lung bypass machine and all, so that she could feel the sun on her face. She listened to music. Her boyfriend and her parents visited. They all believed that the new lungs would come and that the suffering would be worth it in the end‌‌.

But the lung bypass machine can be deceptive. Patients can appear relatively stable, but they are on a razor’s edge. This was the case with Ms. Henry and as the summer wore on, complications started to cascade. By August, she bled, fluid accumulated around her heart, and she was in pain. She was taken off the transplant list, then put back on and finally, when it became clear that even if she survived the operation, she was unlikely to ever leave the hospital, the transplant team made the gut-wrenching decision to take her off the list permanently.

When Ms. Henry learned this news, she let herself sit in the sadness of it for about an hour. And then she did her best to move forward. At first there were hopes that, however unlikely, another transplant program might feel differently about her chances and would take her on. For a brief interlude, a program in Florida seemed possible. Her boyfriend readied the car to head south, Ms. Henry searched online to help her mother find apartments, while her mother prepared to tap into her retirement to pay for the air ambulance that insurance would not cover.

Then this option fell through. And even though her doctors made call after call throughout the country, trying to find another program ‌‌ — and each day she walked, determined to be as ready as she could if someone said yes ‌ — one by one, transplant programs throughout the country said no.

“We called every center we knew. She was a young lady and we all wanted to give her a chance,” Dr. Nirmal Sharma, the medical head of lung transplant at Brigham, told me. “But as she became even sicker, the writing was on the wall.”

By the last weekend in August, more than four months after Ms. Henry was first admitted to our hospital, the narrow window of possibility closed, a reality we often know only in retrospect. Realizing that there would be no perfect moment, Ms. Henry’s boyfriend had proposed to her. The engagement ring sparkled on her finger as her doctors delivered the worst news imaginable. Ms. Henry was too sick. There would be no transfer, no hope of transplant. ‌Which left her in one of the most dreaded realities in modern medicine, awake and alert, ‌because of a life-prolonging machine that had now become a bridge to nowhere.

‌This scenario does not occur often and when it does, it plays out behind closed doors. But as our medical technology races forward — creating ethical quandaries like this one — we need to examine cases like these, to ask tough questions about our responsibility to our patients and what it means to do no harm.

These are the questions that faced the doctors and nurses when a similar tragedy played out about seven years ago at Boston Children’s Hospital. A 17-year-old with cystic fibrosis was on ‌ECMO, waiting for what would be his second lung transplant‌. While he waited, his doctors discovered that he had developed a cancer that can occur in patients who’ve already received a transplant. This meant that he was no longer a candidate for new lungs.

Some of the medical team argued that they should keep ECMO going indefinitely, ‌‌so long as it was giving the boy an acceptable quality of life. Others said that it should stop right away, that there was no logical reason to continue. The teenager ‌had deferred decisions to his parents, who found the idea of determining the day their son would die to be unbearable.

“When I’ve encountered situations like these, there are always people who say, quite reasonably, that we are not here just to keep people alive on machines,” said Dr. Robert Truog, who directs Harvard Medical School’s Center for Bioethics and practices as a pediatric intensive care unit doctor. “But then I think, why not? Why not go until it can’t be done anymore or he or his family tell us to stop?”

Ultimately, the medical team in concert with the boy’s parents decided on a third path that would allow them all to take a less active role in the timing of his death. When the part of the machine that brings oxygen to the blood needed to be replaced, as it inevitably would, they would not replace it. They would withhold this further medical intervention, rather than actively withdrawing anything ‌‌ — a path that would lead to the same outcome in the end but, I imagine, would be somewhat less intolerable for those involved. About a week after this decision, the oxygenator failed, the boy lost consciousness and ‌died.

Though this case occurred years ago, the conversations today are much the same. If transplant is off the table, the machine should stop. But as the use of ECMO continues to increase, including for patients who are bridging to lung transplant, I want to understand why we as a medical community have determined that these machines should not continue indefinitely. This question might seem limited to this one machine, this one scenario. But here at the forefront of modern medicine, we will inevitably find ourselves facing other profoundly difficult questions and unimaginable realities like this one. And the way we respond gets to the very heart of what it means to be a doctor caring for a patient.

Now, when it comes to ECMO, it’s essential to acknowledge that this machine is inherently different from a ventilator, which patients can and do stay on indefinitely. ‌‌It is the riskiest and most labor-intensive mode of life support we have, and in many cases, when a patient will never wake up again or interact meaningfully with loved ones, continuing ECMO serves only to prolong a life ‌‌without quality. For these patients and their families, more time on lung bypass means only more suffering‌. The greater ethical challenge comes in cases ‌‌where ECMO could enable a patient to continue a life that could be perceived as acceptable when compared with the alternative of death, for days or weeks or maybe even longer.

“There’s this mentality that ‘this can’t go on,’ and I question the ethical soundness of that,” said Dr. Kenneth Prager, the director of clinical ethics at Columbia University Irving Medical Center, who has faced many of these cases as an ethics consultant. “Why can’t it? Especially when we consider the considerable resources expended on numerous non-ECMO patients with no chance of survival who may spend weeks or months in the I.C.U. at the insistence of their families.”

‌The ECMO machine itself is a scarce resource‌‌; not all hospitals have access to these machines, and those that do might have only a handful. This raises other ethical quandaries. If we were to continue patients on ECMO even after they are declined transplants, then should we offer the machine to ‌other people who are not transplant candidate‌‌s to prolong their lives?

For doctors like me, the primary question should be not one of resources but instead our duty to the person in front of us. A bridge to nowhere means that we know, with no uncertainty, that this patient will not survive hospitalization. Acknowledging that fact, how do we minimize not just physical pain, but also emotional suffering?

On one hand, I wonder whether we should we leave the question of whether the machine stops and the timing of that to the patient and family‌. But deferring the decision of when to say enough to a devastated patient and beleaguered loved ones could itself be a kind of cruelty.

Then again, for some patients, maybe the greater cruelty is forcing them to come to terms with what is essentially a death sentence. ‌In cases like these, we often involve services like palliative care to help with difficult conversations over time and work with our hospital ethicists to develop policies and procedures. But here in the netherworld that our interventions have created, there are no clear answers.

I cannot know what was in Ms. Henry’s mind that August afternoon. A few days before, she had asked her longtime nurse, Stephanie Christian, what would happen if the last transplant programs declined her. Ms. Christian knew that without the goal of transplant, ECMO would end and with it, the blood transfusions that were necessary to keep her patient alive. It would be days, she said, as gently as she could. Ms. Henry had allowed herself to cry then, but when the news came on Sunday, there was not much more to say. She knew what was ahead, perhaps she had made her peace with it, but she wanted time for her goodbyes and to make the days she had left as good as possible ‌ — for herself and, maybe even more so, for those who loved her.

She was going to have a wedding.

Just two days later, Ms. Christian helped her patient into the wedding dress that she and Ms. Henry’s best friend had picked out at the mall the day before. Ms. Henry wore a wig with a veil that obscured her ECMO catheters. The dress camouflaged the chest tubes. For the first time in months, she stood unassisted as she and her fiancé, Justin Henry, exchanged vows. There was a wedding playlist. A first dance. She beamed. “Somehow you didn’t even see the tubes, and she didn’t look sick,” Mr. Henry remembers. “I cannot believe how perfect it was. Perfect and so messed up at the same time.”

It must have been harder because she looked so joyful, so alive on her wedding day and even the next, when the doctors and nurses stopped by her room to say their tearful goodbyes. Always one to take care of others, Ms. Henry offered them tissues. And then, three days after the wedding, after a hard night at the maximum of what ECMO could offer, she asked to have her makeup done and to get dressed in something nice. It would be her “going away party.”

When she was ready, the medical team started to lower the support on the lung bypass machine while Ms. Christian dosed her patient with medications for pain and anxiety. The family sat at the bedside, listening to Ms. Henry’s playlist ‌‌ — Rihanna and Missy Elliott, among others ‌‌ — and telling stories. Her oxygen levels dropped. Her eyes closed. She woke up once, to smile and to offer a regal little wave to the people who loved her. And just as the sun set that evening, Ms. Henry died.

Daniela J. Lamas (@danielalamasmd), a contributing Opinion writer, is a pulmonary and critical-care physician at Brigham and Women’s Hospital in Boston.

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