Dr. Arnold Relman on becoming the patient

Dr. Arnold “Bud” Relman has been publishing papers about the state of medicine for more than 60 years. He served as editor of the New England Journal of Medicine, one of the world’s top medical journals, from 1977 to 1991, and has since written frequently about the state of health care and medical education. He and his wife, Dr. Marcia Angell, are outspoken about the dangers of profit-making on the backs of patients and the American taxpayer, often sharing bylines on the matter.

Relman’s standing as a top medical editor and his frequent publication has made him a notable voice among physicians. But, for a piece published in the latest edition of the New York Review of Books, Relman takes on an entirely new role: helpless patient.

Last June, shortly after his 90th birthday, Relman fell down the stairs at his Cambridge home, landing on a slate floor. He fractured three vertebrae and parts of his face and skull.

Relman’s career gave him a unique perspective on the weeks he spent in intensive care at Massachusetts General Hospital and in rehab at Spaulding Hospital’s Cambridge facility.

He wrote about what it meant to have been near-death, about the importance of support from his family, and about his gratitude toward the emergency physicians that likely saved his life. But, he also explored gaps in his care: disconnect among doctors who treated him, the distance between doctor and patient created by electronic health records, and the exorbitant cost of his treatment.

The attention the story received surprised him, he said.

“As the expression goes, it seems to have gone viral,” he said. Below is our conversation, lightly edited for length and clarity.

Why do you think this essay resonated with people?

Evidently it’s touched an emotional nerve, about something that a lot of people think about and some have experienced. It’s certainly my first experience with such an illness, and I’ve learned a lot from it.

As people get older, they obviously think about their death. What I think makes this so interesting to a lot of people is, it talks about how it feels to be very close to death. Technically, I died, my heart stopped several times…. Over the long time that I was a doctor taking care of people, I’ve seen a lot of people in intensive care units. I’ve unfortunately seen a lot of people die, but I’ve never ever experienced it myself, as a patient. So, I could talk about it two ways.

Even after your long medical career, it seemed that you found much about your own experience in the hospital to be surprising. Why was it so different as a patient?

Doctors, while they are trained to do what’s necessary to help patients stay alive and to comfort them, they’re also trained to be somewhat detached. When you are a young medical student and an intern and a house officer and you first begin to see people die of disease, you can either be terribly scared and say, ‘This is going to happen to me,’—it can be hard for you to keep your wits about you and be able to do the right things for the patient—or you can say, ‘You know, I’m trained to deal with these problems. I have to be able to do what’s necessary without becoming emotionally involved and emotionally disabled myself. Yet, I have to be concerned and kind and compassionate.’

Doctors don’t have to live the experience of being sick and helpless themselves when they are taking care of sick and helpless people.

The extraordinary thing for me was that I could see both sides of it. Fortunately, my injury, as severe as it was, left my brain functioning pretty well. It was almost a miracle. So, I could think clearly. I knew what was going on, and yet I was totally helpless to do anything for myself except think. I could feel the helplessness and understand the terror of a patient close to death, or in danger of dying. At the same time, I was thinking about what I would do for myself, taking care of myself, if I was the doctor... I was used to taking charge of medical care and teaching medical care, and here I was watching myself nearly dying, being taken care of by doctors, sometimes in ways that I agreed with and sometimes in ways that I didn’t agree with.

There were some significant things that you found objectionable.

I was unconscious for four or five hours, during which [doctors as Mass. General] undoubtedly saved my life. In my opinion there are not many institutions where you can get such excellent care so rapidly, so expertly. I have no criticism of that at all.

In the intensive care unit, after I recovered from the acute episode and at Spaulding—my main criticism was twofold.

First, it wasn’t integrated. The care was rendered by individual specialists who didn’t seem to be working together. They were each doing his or her own thing, and there was no one person who was in charge.

The other criticism I had was when it came to medication. They were too solicitious. They wanted to give me too much medication. They were too concerned that I should not have any symptoms—no pain, no anxiety, no sleeplessness. They wanted me to sleep, to be calm, to be sedated, to be pain-free. Yet, as a physician, I knew there was risk to that. I didn’t want to be sedated. I wanted my head to be clear. I kept refusing medications or suggesting smaller doses... The less active you are, the more danger there is of getting bed sores, of getting pneumonia and all sorts of other infections.

You had an advantage, in that sense, over the average patient. Most people don’t have the knowledge they need to advocate for themselves around those issues.

Unless you are a professor of medicine, as I was, patients can’t be expected to manage their own illness when they are that sick. They have to rely on the good judgement of others. Also, three members of my family are physicians….. I had a lot of medical help, not just my own. But most people don’t have that kind of support.

Certain rules are being more frequently and more rigorously enforced now. For example, with urinary catheters—that’s a frequent source of infection. Doctors are being asked to justify them—why is that catheter in? why don’t we take it out? It’s a matter of better education for doctors. But intensive care units, although they undoubtedly save lives, they also threaten lives, and they have to be managed in a very disciplined way.

In every hospital, there are risks. All hospitals have certain dangers, no matter how good they are. What distinguishes the really first-rate hospitals from the others is that they are staffed by people who are at the top of their profession, particularly in dealing with emergencies. That’s where the really good hospitals stand out from the rest... If the taxi driver had taken me to the average community hospital, I would not have survived... For routine care, after the emergency is over, all hospitals have problems in common.

How are you feeling today?

Pretty well. I’m not as strong or as active physically as I used to be. I think my head still works pretty well. I’ll be writing more articles, and I read a lot and occasionally give a talk. The fractures of my neck have healed well enough so that I don’t have any pain. I don’t need any brace. I have to walk with a cane. I walk very slowly and deliberately to make sure I don’t fall again. I have aortic stenosis [a narrowing of the heart valve] which antedated my fall. I also have an obscure auto-immune disease called polymyalgia rheumatica, which causes stiffness and pain in my muscles. If I were an automobile, you would say my engine works pretty well, but my chassis is pretty disreputable now.

How has your expertise as a doctor and your knowledge about the human body and disease affected you as you age? Has it made the process more difficult or, perhaps, more interesting?

It makes it harder is some ways, because I know very well what’s going on. If you ask me how many more years am I going to live, I can’t really tell you, but I know it’s not going to be a long time. My future is limited. I know that, and I know what my problems are.

At the same time, there’s a certain comfort that comes from understanding that there’s no life without death. All of us are going to die. I’ve seen lots and lots of deaths in my professional lifetime. It makes me more philosophical.

I would say it’s both good and bad to be a doctor and to be old and to be sick. That’s the way it is. You learn to make the most of it. Schopenhauer, the German philosopher, said life is slow death. Doctors learn to accept that as part of life. Although we consider death to be our enemy, it’s something that we know very well, that we deal with all the time, and we know that we are no different. My body is just another body.