My patient’s son took me aside late one evening to share a request.
I braced myself. My patient had been intubated with Covid-19 for weeks, her lungs growing stiffer each day. Her sons held vigil at the bedside, pausing only to critique the nurses and health care team. They didn’t like the way the nurse turned their mother. They demanded yet another course of antiviral treatment for Covid-19. As their mother’s health worsened, their frustration escalated — and so did my unease.
The son pulled a pill bottle from his backpack. It was a mixture of herbs that he had ordered off the internet. He wanted me give the supplement to his mother through her feeding tube, along with her other medications. I looked it up online. There was no evidence that it would help his mother — in fact it was on a list of medications deemed useless for the virus. At the same time, I suspected that my patient would not live through this hospitalization, and I wanted to heal the relationship between the hospital staff and her family.
I told him that I needed to confer with our pharmacist. But what I really needed was time to consider my response. If I acquiesced, it wouldn’t be for medical reasons, but to try to connect with an angry and distrustful family. I had to ask myself: Is it OK to depart from the standard practices of medicine for the sake of building trust with patients and their families? It’s a question that is more relevant than ever in this political climate, amid increasing vaccine hesitancy and suspicion of medical professionals.
That moment with my patient’s son felt particularly fraught, but these sorts of requests are common and fall along a spectrum. Doctors may agree to give their patients probiotics because they are harmless, even though the evidence for their effectiveness is weak in most cases. They might prescribe an unnecessary antibiotic. They might even agree to spread out the timing of pediatric vaccinations at a family’s insistence.
Few treatments illustrate these tensions better than ivermectin for Covid-19 — a parasite drug that was falsely promoted by right-wing influencers as a cure for the virus. Dr. Michael Brown, a pulmonary and critical care physician at Colquitt Regional Medical Center in Georgia, was struck by the backlash from patients in his rural community when his hospital didn’t include it in its standard Covid-19 treatment protocols. Even though Dr. Brown believed that it wouldn’t help his patients, he and his colleagues debated whether they should prescribe it anyway.
For Dr. Brown, the answer was yes. In some exceptional cases, he reasoned, it was the right thing to do. “There are patients and families I knew I was never going to be able to treat if I wouldn’t at least compromise,” he said. Distrust in the health system was rampant. He could justify prescribing the drug to build rapport. After all, even though the medication had no medical purpose, it was fairly harmless.
But even if a useless drug isn’t toxic to a patient, there is harm to the greater system, argues Dr. Lauren Van Scoy, a pulmonary and critical care specialist who researches health communication at Penn State College of Medicine, and wrote a paper with Dr. Brown on how doctors handled requests for ivermectin.
Dr. Van Scoy sees acceding to requests for unproven medicines as a “slippery slope.” When doctors prescribe medications that they don’t believe in, even ones that pose little risk to the patient, it can cost them the trust of their colleagues. Families might question why their doctors give in to some requests and not others. She believes that what patients and their families really need is honest and open communication surrounding doctors’ decisions and the time to build confidence in their providers.
But when distrust is so entrenched, as is the case in the United States now, that ideal might not be achievable — especially in our conventional clinical practices where doctors have some 15 minutes with each patient.
Each specialty faces its own ethical gray areas. Should pediatric practices take on patients whose parents refuse vaccination? At least half of such practices do, rather than deny care to children. Bringing such a family into a practice can provide an opportunity to educate the parents and even change their minds. Others do not, with the argument these children could spread disease at the clinic. There are no easy answers, particularly when health care decisions have become politicized.
When patients come to my intensive care unit, they bring with them all their experience with the medical system. For some families, a history of bad experiences manifests as disbelief when we give them news that they do not want to hear. For others, it takes the form of anger. When we consider demands for unnecessary medications or procedures, our goals are twofold. We must do what is right for the patient, but we also try to mitigate the suffering that a family will experience if a loved one dies.
“There are lines you have to draw,” said Dr. Judith Nelson, a palliative and intensive care specialist at Memorial Sloan Kettering Cancer Center, but, she added, “You don’t want the family to go home feeling like the I.C.U. fought with them or denied them something that would have made a difference.”
Doctors have to acknowledge the power differential between us and our patients, who are away from their homes, in many ways helpless as they face the most difficult moments of their lives. We ask our patients to trust us implicitly, to believe our diagnoses and to undergo courses of treatment they might not understand. This doesn’t mean that we need to give patients whatever they want just to level the playing field. But we can take their requests seriously, even if we wouldn’t have considered them otherwise.
After all, our patients and their families are not the only ones who insist on last-ditch therapies without evidence. When I am working in the I.C.U., I will sometimes order a “Hail Mary” antibiotic or a steroid that most likely will not benefit my patient but will allow me to feel that I did everything I could. At the end of the day, we are all human. Perhaps the best way to gain trust is to bring our patients into our thought processes and to collaborate on our imperfect decisions.
Which brings me back to the bottle of pills from the internet. When I returned the next day, the patient’s family members were even more insistent. They had been doing their own research and found an article promoting one of the ingredients as a potential treatment for Covid-19. I knew that if I said no, our relationship would only become more fractured. I couldn’t fix their decades of distrust in their mother’s final days. The medication was low-risk. And so I was honest. I explained to them that while I did not believe the drug would work, we would give it to their mother because it was so important to them.
That evening, a nurse crushed the pill and gave it to my patient through her feeding tube. Nothing changed. Her lungs continued to worsen. Her sons continued to pray. As the days passed, I wondered about my decision. Had I opened the floodgates? Would the sons ask for something more, something even more contested?
But they didn’t. And though they remained angry — their mother was dying, after all — I think there might have been a softening, some kind of understanding between us. When my patient died a few weeks later, we told her sons that we did all we could. I think they knew that to be true.
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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