The Doctor’s Oldest Tool | NEJM
I first met MB while reviewing new patient charts in my primary care HIV clinic. Even in a public hospital where many patients were out of whack, her case struck me. He lived in a one-bedroom hotel and had a history of homelessness. He had been diagnosed with HIV years earlier and had managed occasional contact with the health system but had never started HIV treatment. He categorically argued that HIV was not the cause of AIDS and that the drugs were at best unnecessary and at worst toxic. He had been hospitalized several times recently with life-threatening diagnoses including pneumocystis pneumonia and pneumococcal sepsis. He had come to the clinic for emergency care and post-discharge visits, but had never developed a lasting bond with a clinician.
MB looked skinny and worn out when we first met. After discussing her recent hospitalization, I fell into a common trap. I have mentioned HIV treatment and he confidently stated that HIV does not cause AIDS. I mentioned solid research, but he cited early reports on HIV – citing journal, date and author – and pointed out subtle inconsistencies. He asked me if I knew of a seminal 1980s article, and I had to admit that I had never read it in detail. When asked why he thought he was sick, he looked a little apprehensive but largely resigned: “I don’t know.” At the end of the meeting, I put on a prescription for antiretrovirals and said, ‘If you change your mind, they’re there for you to pick them up. He laughs.
Two weeks later, he did not show up for his follow-up visit and the social worker said she would call him. Several months later, an inpatient team emailed me saying he had been admitted with advanced systemic malignancy. Oncologists believed chemotherapy would be in vain without treatment for HIV, so he was sent back to the hospice. Life events documented in his case suggested a difficult time: marginal housing, no clear relationships, psychiatric encounters but no diagnosis, history of trauma, limited education, conflict with the law. I was amazed that he had read so many scientific journals.
Denial of AIDS has always been part of the HIV crisis. In the 1990s, virologist Peter Duesberg vehemently denied that HIV causes AIDS. Playing on homophobic tropes, he suggested that elements of the âgay lifestyle,â such as drug use, lead to immunodeficiency. The medical establishment avoided Duesberg, but his theories spread widely. When HIV raged in South Africa, former President Thabo Mbeki endorsed Duesberg’s views and delayed public health treatment, costing hundreds of thousands of lives. Prominent American acolytes of Duesberg have died of AIDS, and some are leaving their children to die rather than receive proven treatments. Duesberg was not the only source of dissent. The black American community’s justified distrust of the medical establishment has led some to believe that the Central Intelligence Agency created HIV. But although I have met many patients who were skeptical of anti-HIV drugs to varying degrees and for various reasons, none had taken this skepticism as far as Mr. B.
That Saturday, I was thinking of MB. Finding out that his hospice was nearby, I decided to visit him. When I arrived her room was quiet except for the tinkling of a water sculpture. MB looked peaceful and didn’t seem particularly happy or bored to see me.
– I thought I’d stop by to see how you’re doing, I said. Then I got right to the point: âI didn’t think you were trying to die. You don’t want to be here, do you?
âI don’t know,â he replied, âbut I don’t know what can be done for me. “
I told her that the HIV drugs could still work despite her severe illness. He calmly reiterated that HIV does not cause AIDS and HIV drugs are unnecessary. I argued that science is a flawed system, but work is peer reviewed, false data is exposed, and dozens of rigorous studies with similar results cannot all be wrong. His counter-arguments contained more than a grain of truth: the pharmaceutical industry influences science, profits dictate medical practice, the desire for scientific prestige corrupts researchers. We had reached a dead end. âWell,â I said, âI don’t know if there’s anything else I can do for you.â The usual subtleties at first seemed unusable. “See you later” sounded false, “Be careful” absurd. I finally mumbled “Bye” as I slipped out of the room.
Coming out of the hospice, I felt that something hadn’t been said, even though I didn’t know what. MB was dying. He wasn’t psychotic, he was reasonable. He was not ignorant, he was quite knowledgeable. He didn’t want to die but seemed ready to die for his beliefs. I tried to really consider his point of view. How can I be sure that HIV causes AIDS? Did I conduct the experiments myself? Could I even fully understand them?
The truth is, I believe HIV causes AIDS because I trust the people – teachers, editors, scientists – who have told me, not because I can independently assess and confirm the science. I am part of what anthropologist Heidi Larson calls a “chain of trust” in a social system that has treated me fairly and generously – a chain that has not reached MB I realized that links in the chain consist of lived experiences and relationships, not data in scientific journals. I believe what my colleagues say because of my closeness to their experience: I work with people like the scientists who conducted the early studies, and I know they are generally honorable and credible. MB didn’t believe it – in the end, not because of any quarrels with the scientific method, but because the sum of what society, and “expert” professionals like myself, had offered him in life looked like more to lies than to the truth. Instead of discussing the veracity of science, maybe I could just testify, as a human to another. It was worth a try.
I went back to MB and started, âI thought you might feel like the world has lied to you many times. Granted, I’m not well versed in laboratory science to verify experiments, but I know this: I’ve seen a lot of people who have the same disease as you, and I’ve given them these drugs, and today ‘ they are healthy doing the things they want with life even though I am not sure exactly why or how. I’ve seen them for years. I ask you to trust me on this one.
MB remained silent. I was surprised, and pressing on what might be a benefit, I asked, “Would you be willing to try the drugs?” I was amazed when he said yes.
I asked a nurse for an extra dose of antiretroviral drugs, which I watched MB swallow. Now he was on treatment and I could more easily send him to the emergency room. Over the next several weeks, with hospital treatment, he recovered remarkably quickly – a phenomenon which was dubbed the âLazarus Effectâ at the start of the era of HIV treatment. Over the next several months he came to my clinic for monitoring. His CD4 levels shot up quickly. We didn’t discuss the drugs, but he was out with them and his viral load was undetectable. When her monthly prescriptions ran out, I renewed them. Over the years, he rarely came to the clinic, but the pharmacy confirmed that he picked up his medications. In our brief conversations, we focused on what he was feeling: his chronic edema, his weight gain, his accommodation. We never spoke of that day at the hospice. Years later I moved and he was assigned to a new clinician.
I remembered MB during the Covid pandemic, as public health and medicine battled public dissent over social distancing, masking, and now vaccination. Denial of Covid, like denial of AIDS, reveals that many of the doctors’ assumptions are incorrect. We overestimate the value of reasoning and facts. We believe in our clinical authority. We expect patients to behave rationally. But we all develop our beliefs through interactions with other people – what you believe depends on who you trust. In a life where MB struggled, I was rewarded. He was dying while I was alive. No wonder the conventional truths that were taken for granted to me seem the opposite.
I never dared to ask MB why he had changed his mind. But if acceptance of Covid vaccines and other evidence-based interventions depends on trust, then doctors have an important card to play. Primary care physicians in particular can know our patients as individuals, their needs and wants, their preferences and idiosyncrasies, sometimes their fears and hopes. But even hospital workers who surround a patient for several days form a bond. No disembodied message (even if it’s crafted by marketing experts) can compete with someone you know taking a chair. Even though the pandemic has pushed members of our profession to our emotional and professional limits, one of our oldest tools may turn out to be one of our best: speaking with patients. By getting to know patients’ stories, and perhaps letting them know our own, we might be able to add a link to the chain of trust, even if it is one, and collectively. , these conversations can be a potential cure for the afflicted society. fabric of our time.