When doctors become patients

by Carolyn Thomas  ♥ @HeartSisters

In his online essay called This Won’t Hurt A Bit, cardiologist Dr. Eric Van De Graaff tells his own story of being a hospital patient after surviving a motorcycle accident while he was in med school. His experiences as a patient will sound very familiar to heart patients, and the lessons he learned while on the other end of the stethoscope may very well have made him a far better doctor.  For example:  

• A universal constant about being a patient is vulnerability and loss of control.  “Once I entered the hospital, I lost power over nearly everything: what I ate, what I wore, how much activity I was allowed, whether I was permitted to get up to the bathroom—it was all dictated by someone else.”
• You can’t do anything productive when you’re lying in the hospital.  “As a medical student, I had stacks of books I was supposed to be studying and nothing but time on my hands—it should’ve been the perfect arrangement. I found, however, that the options offered to me (either endure the pain or take the narcotics) put me in a state of mind that prohibited any meaningful concentration.  So I just sat there and watched television.”
• Everything hurts.  “I got stuck with needles, had dressing changes, physical therapy – even going to the bathroom – and none of it was benign. Just rolling over in bed was excruciating. At no point did anyone say those magic words ‘This won’t hurt a bit’ – and thankfully not. I’m sure I’d have launched from my bed and strangled them with my IV tubing out of sheer spite for their blatant disingenuousness. Oh, and one final pearl: Foley (urinary) catheters hurt more coming out than they do going in.”
• Modesty is a luxury that patients don’t get.  “After a couple of days of wearing breezy gowns, I asked my family to bring me a pair of sweat pants. What a relief.”
• You become dependent on others for everything.  “Even weeks after the motorcycle accident, there were things I couldn’t do on my own. I still remember vividly the first time I was able to haul myself out to my car and take a drive by myself. The sense of freedom and accomplishment was overwhelming.”
• The not knowing may be the worst of all.  “The day after the wreck, the attending surgeon came to my bedside to give me a wrap-up of my injuries. Knowing I was a runner, he sadly shared with me that I’d suffered too much damage to my adductor muscles to be able to run any distance. I digested that information over the next few days and slid into a deep depression as I contemplated my future limitations.”

Dr. Stanley Lewin is another cardiologist who became a patient – in fact, a heart patient – after he suffered a heart attack. Afterwards, he reported a much better understanding of the angst his patients feel when he gives them unsettling news about their heart health. He explained:

“   I was worried. It is very different being a patient than an advisor. It’s very easy to tell somebody to have something done; it’s much different when you’re telling someone to do something to you.”

Together, Dr. Lewin and his cardiology colleagues decided he should undergo angioplasty, a procedure to open blocked or narrow heart arteries, and have three stainless steel stents inserted to help prevent his arteries from becoming blocked again. And the cardiologist-turned-heart patient admits he’s faced some challenges in following the advice that he has given his cardiac patients all these years.

 “I try to go to the gym several times a week. It’s very difficult to fit that into my schedule. And now I’m eating oatmeal for breakfast five days a week.”

When Dr. Lewin signed up for a Cardiac Rehabilitation program, he often ran into his own patients, who were surprised to see their doctor walking the treadmill. He explained:

  “People would tell me, ‘Gee, I have an appointment to come see you next week!’ Some of them thought I was just coming to exercise. ”

He added that his personal experience with cardiac rehab now helps him relate better to his patients.

“   I  can identify more now with what they’re going through and the concerns they face, and the challenge it can be to follow doctor’s orders.”

Psychiatrist Dr. Robert Klitzman wrote a book called When Doctors Become Patients inspired by his own poignant tale of illness. After his sister died on the 105th floor of the World Trade Center on September 11, 2001, his body gave out. He couldn’t get out of bed. He developed what felt like the flu. Even though he’s a psychiatrist, he now claims he resisted the notion that he was suffering from depression. Later, after acknowledging his illness, he gained new insight into his own patients. He was amazed at how pronounced the physical symptoms of depression really were.

“I felt weak and ashamed, and began to appreciate, too, the embarrassment and stigma my patients felt.”

Dr. Marisa Weiss, who learned that she had an invasive Stage 1 cancer in her left breast, is not just any physician. A radiation oncologist and a specialist in breast cancer, she founded a popular website, breastcancer.org, for women seeking comprehensive information about the disease. She told NPR radio:

  “When it happened to me, it was a shock. I was a very busy person and during a very busy day like anyone else, I had to rush to the mammography department, take all the clothes off, wait in that gown, wait to be called – and I thought it was just going to be like any other year.”

This oncologist now considers herself a woman with a mission. She sees other breast cancer patients three days a week, but she devotes four days a week to the site, which draws millions of visitors from 250 countries each year. She has written four books on breast cancer and breast health for a general audience.

Dr. Wendy Harpham writes a regular column called View From the Other Side of the Stethoscope for the professional magazine, Oncology Times.  She’s both a physician and a cancer survivor(non-Hodgkin lymphoma). She coined the phrase ‘healthy survivorship” to describe her own patient journey:

”   Only seven years after opening my solo practice in internal medicine, I developed lymphoma. I closed my practice for 10 months while undergoing intensive chemotherapy. Reopening my practice was sweet. I understood in a whole new way why I wanted to be a clinician. Unfortunately, just before my one-year checkup the lymphoma recurred. I closed my practice permanently. It was the death of a dream.”

For a compelling look at another physician’s story of suddenly finding himself on the other end of the stethoscope, read Dr. Itzhak Brook‘s book My Voice about his own experience as a physician facing throat cancer and, ultimately, a laryngectomy. He gives this example of how helpless it can feel when doctors become patients:

  “On one occasion, I asked a senior resident to clean my obstructed tracheotomy tube. He reluctantly complied, but did it without using a sterile technique and flushed the tube using tap water. The tube he wanted to place back was still dirty, and when I asked him to clean it better, he abrasively responded: ‘We call the shots here!’ and left my room.

“I felt humiliated, helpless and angry being treated in this fashion.”

And when Stuart Foxman interviewed author and physician Dr. Jerome Groopman for his Doc Talk column at the College of Physicians and Surgeons of Ontario last year, Dr. Groopman told him about his own experience as a patient after suffering a lingering back injury while training to run the Boston Marathon:

    “I learned more in the months of being a patient than I did in all my years of medical school. It was a completely different experience being on the other side. What appears to be apparent and direct and straightforward for a physician is often fraught with complexity and uncertainty for a patient.

“I remember as an intern and resident, patients would come into Emergency with severe back pain, and half the time we would shrug and say they were a bunch of slackers and malingerers who wanted to get out of work. We had no idea.

“Until I injured myself, I had no concept of what it was like to struggle with debility. But you shouldn’t have to have every disease in the world in order to develop that empathy.”

In case you have somehow missed the general drift here, the point is this:

These “lessons” learned are the actual reality, over and over and over again, for those of us who are the frequent flyers of the health care system due to a chronic illness like heart disease.

As I wrote here for the British Medical Journal:

“I’m no longer surprised now when I read physicians’ shocked accounts of learning firsthand what it feels like to become a real live patient.

“No matter how many years of clinical experience working with, caring for, and listening to their patients they may have, physicians and other healthcare professionals inevitably report a “Eureka!” moment when facing their own health crises.

“They announce to their colleagues, for example, that hospitals are demoralizing, medical procedures frightening, lack of dignity embarrassing, symptoms distressing, dependence humiliating, the simplest of tasks exhausting, anxiety relentless, their past as a healthy person but a dim memory, and a future looming bleak and uncertain. 

“Who knew?

“Welcome to our world, doctors.”

Most docs just don’t get this – unless they, like the physicians mentioned above, have actually had to lie there – helpless, dependent, sick, confused, frightened – on that hospital bed and desperately ring the nurses’ call bell that will not be answered.

And by the way, when physicians become patients – particularly in the U.S. – they can afford far better medical care than any of their working-class patients can.

Physicians are certainly not sharing the experience of one Oregon heart patient, for example, who told me she is fighting off collection agencies and trying to pay off the $60,000 still owing from her previous hospital visit four years ago.  See also:  Melissa Mia Hall, Who Could Not Afford Health Insurance, Dies of Heart Attack.

Not that I would wish a serious medical condition upon any human being, but becoming a patient seems to be one priceless and unforgettable form of medical education that so far can never be taught in a classroom.

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NOTE FROM CAROLYN:  I wrote much more about becoming a patient in my book, A Woman’s Guide to Living with Heart Disease. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon  – or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 30% off the list price).

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See also:

Why Physicians Must Stop Saying: “We Are All Patients” – my post in the British Medical Journal on what happens when doctors become patients

“We are all patients.” No, you’re not.

Stupid things that doctors say to heart patients

‘Healthy Privilege’ – when you just can’t imagine being sick

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♥ This article was also picked up as a guest post by KevinMD.