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“I AM a senior physician with over six decades of experience who has observed his share of critical illness — but only from the doctor’s perspective”, writes Dr Arnold Relman in last week’s New York Review of Books.
That all changed when Dr Relman broke his neck in a fall at the age of 90, leading to an emergency tracheotomy, repeated cardiac arrests and months of rehabilitation.
“I learned how it feels to be a helpless patient close to death”, writes the Harvard professor and former editor of the New England Journal of Medicine.
Among the insights Dr Relman* gained were a greater appreciation of the importance of good nursing care for patient wellbeing, the crucial need to have a single doctor (preferably the patient’s GP) coordinating care, and the inconsistencies in quality of care between different US institutions.
He was also concerned about the quality of electronic health records kept by some of his doctors, “full of repetitious boilerplate language and lab data, but lacking in coherent descriptions of my medical progress, or my complaints and state of mind”.
There’s no question that doctors can learn an enormous amount about the health care system and their own clinical practice from becoming patients.
Closer to home, Melbourne oncologist Dr Ranjana Srivastava has written about the experience of becoming a patient when her unborn twins died as a result of twin to twin transfusion syndrome.
“I have seen this room a hundred times but never its ceiling”, she writes of being wheeled into the operating theatre to have the babies induced.
When she refuses to be intubated for the procedure, the anaesthetist is clearly annoyed, casting her “as yet another difficult patient wanting to play doctor”.
Being on the other end of the stethoscope can certainly shift doctors’ perceptions, particularly perhaps a view of non-compliant patients as an unwelcome irritation.
A paediatrician once told me about the distress he felt accompanying a young grandchild with multiple health problems to medical appointments and how it had given him new understanding of some of the more “difficult” parents of his own patients.
US psychiatrist Dr Robert Klitzman is another who felt he gained new insights into patients after plunging into depression following his sister’s death in the 2001 collapse of the World Trade Center.
“I felt weak and ashamed, and began to appreciate, too, the embarrassment and stigma my patients felt”, he writes in his book, When Doctors Become Patients.
Dr Klitzman interviewed more than 70 doctors for the book, including a gastroenterologist who had no idea what patients meant when they described their abdominal pain until she developed it herself.
Then there was the surgeon who realised for the first time after undergoing surgery himself what a big difference there was between telling a patient they had a 5% chance of dying during an operation or saying they had a 95% chance of survival.
A common thread in these doctors’ accounts is the way their experience as a patient has made them a better doctor.
“I realized that I, as a doctor, would never be the same, or look in the same way at the problems that patients and their families faced concerning depression or grief”, Dr Klitzman writes. “The difficulties were far more complicated and long-lasting than I had ever imagined…”
There are some things you can’t teach in medical school.
Jane McCredie is a Sydney-based science and medicine writer.
* Dr Relman’s determination to continue his ongoing commentary on the US health system can be seen in the photo accompanying his article. In the immediate aftermath of his devastating fall, he sits propped up in the surgical ICU while his wife, Dr Marcia Angell, another former editor of the New England Journal of Medicine, helps him correct proofs of an article he has written on Obamacare.
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I am 75 and after two operations on my back and one on my hip over the past 20 years I agree with all the comments submitted above and I have also come to realise how important it is to monitor one’s own medication, even when in the very best hospitals. Several times vital anticoagulant injections have been forgotten. Only extreme persistence on my part has resulted in a check and the relevant injection appearing. I warn all my elderly friends to be aware of their medical requirements when in hospital, and make sure they are receiving them.
Watching an elderly parent across an extended acute severe illness spanning ed, ICU, multiple surgeries and complications, rehab and the vagaries of the aged care system, I gained a different insight into how varied and fragmented our health system is! and the multiple barriers to excellence entrenched in it? Politicians won’t fix it, we have to
As young doctors many of us learnt to control our emotions and keep a professional distance from patients. Necessary skills in many ways. However as life goes on we are inevitably touched by illness in ourselves, family and friends. We can then learn to consider and to benefit by understanding, ” How do you think it feels to be the patient in this consultation?” This is a point my Balint group facilitator is constantly bringing up. My own illness experiences have profoundly affected me and I have also learnt to appreciate the skills and care of good nurses.
In Sick Doctors, edited by Raymond Greene (published by William Heinemann Medical Books Ltd in 1971) , the editor wrote “During a recent illness it became clear to me that the descriptions of the symptoms in medical ‘literature’ were very inadequate. In Sick doctors published in the Australian Family Physician Vol. 30, No. 3, March 2001, pages 283-4, and subsequently in my autobiography, Life is what you make it (publisher Melrose Books 2009), I described my own experiences. In The Psychological Impact of Breast Cancer , Cordelia Galgut, a doctor of psychology, describes a psychologist’s insight as a patient.
Furthermore, anyone who has not experienced a fatal, or potentially fatal, illness knows what it is like to be in such a position.
Doctors, who were, or are, taught to be objective about patients, miss what are the innermost feelings of those to whom they are tending. It is most important that it would be better if they could try to develop some understanding of what it is like to be the patient, and to develop empathy.
Whilst you can be a good and compassionate doctor without being a patient, the experience of being on the ‘other side’ can make an enormous difference. At the age of 34, as the mother of 2 young children, I was diagnosed with a HER2 breast cancer with lymph node mets. I have experienced the terror, the multiple surgeries, the pain, the vomiting, the baldness, the lymphodema and the fatigue. I have learnt what it is like to recontruct a hopeful life under the spectre of death. That has definitely made me a more aware, more compassionate doctor.
I have experienced the fallibility of our medical system. The ‘normal’ mammogram when there was cancer. The ‘normal’ papsmear when there was CIN2. The positive pregnancy test 6 months after a tubal ligation. The adhesive gut obstruction after the surgery for the ectopic pregnancy. What saved me in all of that was my knowledge. So I seek to better educate my patients.
I have experienced doctors who did their job competently but just treated my breasts and those who treated me as a whole person and helped heal me. That continues to impact on how I treat my own patients today.
Most of all, though, I have experienced the fear and anxiety of having to wait, unnecessarily, for days and days to receive the results of a core biopsy to see if I had a recurrance because no one seemed to think it was important enough to contact me sooner. I am now fastidious about letting patients know the results of critical tests as soon as I am able because I know that on the other end is a real person with real fears for whom life feels, even temporarily, very precarious.
My problem was the fact that I had difficulty getting my medication on time from the nursing staff, and getting changes discussed with the doctor earlier activated. On one occasion when I had experienced enough pain waiting, I used my mobile phone to ring my surgeon’s receptionist who then brought up samples as the rooms were based in consulting suites at the private hospital I was admitted to. It turned out my new medication had been in the ward for two hours – just sitting there. Eventually, I went home early, after discussion with my surgeon, with a friend caring for me at home.
That was in a well regarded private hospital. I wonder now what it is like for patients in the public system.