Being a patient is an unforgettable form of medical education

In his online essay, 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.

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 is now writing her third book on breast cancer 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 survivor of non-Hodgkins 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 story reprinted on KevinMD.com of his own experience as a physician facing throat cancer and, ultimately, a laryngectomy. He gives this example of how helpless it can feel to be a patient:

“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.”

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

Most docs just don’t get it – unless they, like the physicians mentioned above, have actually had to lie there – helpless, confused, frightened – on that hospital bed and desperately ring the call bell as we have all done.

And when American physicians become patients, they can afford far better medical care than many of their working-class patients can – like the 45,000 Americans, according to a 2009 Harvard University study, whose deaths each year are directly attributable to inadequate or no health insurance.

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 can never be taught in a classroom.

Carolyn Thomas is a heart attack survivor who blogs at Heart Sisters.

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  • http://pulse.yahoo.com/_3CY2U67646G7UIAHBQVTT2UP4Y Kristy S

    Excellent article.  One of my favorite movies is The Doctor with William Hurt.

  • http://pulse.yahoo.com/_3CY2U67646G7UIAHBQVTT2UP4Y Kristy S

    Excellent article.  One of my favorite movies touches on this subject: The Doctor.

    • http://twitter.com/HeartSisters carolyn thomas

      I agree, Kristy.  That’s the very moving William Hurt film about a physician diagnosed with throat cancer.  It should be shown to ALL med students as part of their training.

      Another must-see in med school should be the Emma Thompson film “Wit”, about a university prof dying of metastatic Stage IV ovarian cancer. Film critic Roger Ebert named it as one of the Best Films of 2001. He also wrote that, years later as a cancer patient himself, when he tried to watch the DVD, he discovered: “I
      actually could not watch the movie. I remembered it too clearly,
      perhaps, and dreaded re-living it. When I reviewed it, its situation was
      theoretical for me, and I responded to the honesty and emotion of the
      drama. Since then, I have had cancer, and had all too many hours, days
      and weeks of hospital routine robbing me of my dignity. Although people
      in my situation are always praised for their courage, actually courage
      has nothing to do with it. There is no choice.”

      That’s part of the problem – when physicians are trained, deadly medical conditions are as “theoretical” for them as movies are for film critics.

  • http://www.facebook.com/profile.php?id=1362091439 April Tenhunfeld

    I’m always amazed when I see the responses from physicians who experience illness or debility. Physicians who become patients suddenly have an ephinany and become crusaders for reformation of bedside manners. What this article says to the John Q Public is that most physicians never understood what they were going through in the first place. I truely appreciate the fact physicians who experience illness become more enlightened but I thought that you were trained somewhere in medical school to at least have some compassion for the people who came through your practice!
    I have been an RN for 25 years and I will graduate from a nurse practitioner program in a few months. As a new graduate no one had to tell me to sit with a patient who had just received bad news from the doctor or put the dentures back in the mouth of a dying patient so they could go to the funeral home with some dignity. I can see what depression does to a patient just by looking and their face. I have been on the other side of the table a few times myself having to undergo several surgeries in my life time.
     
    It’s unfortunate that patients seek out their doctors and hope to find some compassion and understanding and come up empty handed.

  • http://www.facebook.com/profile.php?id=1362091439 April Tenhunfeld

    I’m always amazed when I see the responses from physicians who experience illness or debility. Physicians who become patients suddenly have an ephinany and become crusaders for reformation of bedside manners. What this article says to the John Q Public is that most physicians never understood what they were going through in the first place. I truely appreciate the fact physicians who experience illness become more enlightened but I thought that you were trained somewhere in medical school to at least have some compassion for the people who came through your practice!
    I have been an RN for 25 years and I will graduate from a nurse practitioner program in a few months. As a new graduate no one had to tell me to sit with a patient who had just received bad news from the doctor or put the dentures back in the mouth of a dying patient so they could go to the funeral home with some dignity. I can see what depression does to a patient just by looking and their face. I have been on the other side of the table a few times myself having to undergo several surgeries in my life time.

    It’s unfortunate that patients seek out their doctors and hope to find some compassion and understanding and come up empty handed.

    • http://twitter.com/HeartSisters carolyn thomas

      Hello April and thanks for your unique perspective here.  I’m not sure there IS an effective way to “train” med students to “at least have some compassion for the people who come through your practice” – as long as we’re vetting med school applicants by favouring the brainiacs who score in the highest percentile.

      Maybe the reality about compassion is: you either have it, or you don’t.  Kind of like a personality.  The docs featured here, however, seem to have clearly experienced that career-altering epiphany by learning first-hand about life in that drafty hospital gown. 

      Good luck to you in your NP career.

  • http://twitter.com/KathyKastner kathy kastner

    Sigh. What will it take for doctors (whom I can’t help but think, think they’re doing good!) to do what my parents always told me:  think of how the other person feels. 

    Carolyn, thanks for this wonderful (albeit somewhat discouraging) series of experiential quotes from docs. To which I’d like to add this empassioned video by Don Berwick
    http://www.youtube.com/watch?v=SSauhroFTpk
     

    • http://twitter.com/HeartSisters carolyn thomas

      Thanks Kathy for this excellent video recommendation from Dr. Berwick.  He once wrote (British Journal of General Practice, November 25, 2008): 
      “Some say that doctors and patients should now be partners in care. Not
      so, I think.
      “In my view, we doctors are not our patients’ partners; we
      are guests in our patients’ lives. We are not hosts. We are not priests in a cathedral of technology.”

      • Anonymous

        Um….Dr. Berwick is a romantic…but his Jane Austen view of British socialized medicine is as problematic as his appointment was. Not realistic…and this article is about doctors finding reality.

  • Anonymous

    I loved this article…no…not that I enjoy reading about misery….but the lessons from our personal travails are worth reading…they make the pain others have suffered worth it. Our doctor does funky tests that are pretty uncomfortable…he lets the staff do it to him…nothing like being a victim to understand them on a personal level. Why aren’t residents checked in for observation or testing…like colon tests….etc. Dr Oz filmed his procedure…then wrote in maybe TIME magazine he was a bad patient who irritated the top doc who did the procedure. His world was rocked by a diagnosis that most of us shake off (I know I did….just grateful they found the problem and can continue to test and take care of it….I remember thinking….wondering…what the hey….why is he wussying out! Ha!). Why aren’t residents turned inside out as part of their training? It would benefit them…and well…mankind. They could look at a patient with that…..we ain’t in Kansas anymore look…and mean it!:)

    • http://twitter.com/HeartSisters carolyn thomas

      Hi Alice – there’s probably some med school rule about not being allowed to turn residents “inside out as part of their training”.  Too bad it seems to take a personal, real-life diagnostic experience to focus, in a very laser-like fashion, on what patients are actually going through.

      • Anonymous

        I thought the William Hurt movie you recommended had the doctor lining up residents for some pretty colorful tests? The movie was based on a real life book.

  • Stephanie Katz

    It’s interesting that there do not seem to be any responses from physicians to this article. I’m guessing they didn’t even read it – because – after all – they already know everything – including exactly how and what each and every patient should feel.

    And, Alice – you might want to do a more thorough review of Dr. Berwick’s professional record before maligning him in such a way – using only sources from right-wing extremist media outlets doesn’t provide a very balanced viewpoint.

    • Anonymous

      Well….there we have it… a well researched response.  Not!  I really think you should have looked into what I said…it is a fact…you didn’t even take the time to see the truth…you just ranted.  I spend tons of money on progressive and liberal mags….well…that is if you must know:)….I suggest you get some balance…it will serve you well if you want the facts. 

      Gosh…to think patients sit here everyday calling doctors to task….and we often don’t even know what we are talking about……example above.  We look like a whining bullies…….

    • http://twitter.com/HeartSisters carolyn thomas

      Hi Stephanie – I’m guessing that no comments here from physicians so far may indeed reflect that they’re not reading the KevinMD posts in the PATIENT category as much as those in the PHYSICIAN or MEDS or POLICY categories.  I’m surprised that this post wasn’t categorized in EDUCATION, actually. Its original post title was “When Doctors Are Patients”.

      As for the off-topic debate on Dr. Berwick that seems to be heating up here, perhaps you and Alice might like to take that off-line…. ;-)

  • http://twitter.com/HeartSisters carolyn thomas

    Follow-up to Stephanie’s comment  “…. there do not seem to be any responses from physicians to this article…”  Today a new post is up here written by a physician called “What This Doctor Learned When He Was a Patient” that was categorized under “PHYSICIAN” (not PATIENT):    http://www.kevinmd.com/blog/2011/08/doctor-learned-patient.html

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