When the doctor becomes the patient
Doctors, like everyone else, get sick, and they are sometimes diagnosed with life-threatening illnesses that put them on the other side of the consulting desk and plunge them into the hospital system. In the process, do they gain special insights into medical practice, and if so, which ones?
It was in the whirlwind following her diagnosis of breast cancer that cardiologist Maria Rosa Costanzo first experienced the horrible feeling that her illness was “robbing me of who I was. I wondered if I could ever be the same”.
“As I patted myself on the back for saving others’ lives, did I ever truly reflect on how those therapies might affect patients’ humanity and sense of self?”
In an article about her experience, Dr Costanzo writes about how, as a practising physician, she’d never considered how “routine” tests could make a patient feel scared and humiliated.
“I became acutely aware of the latter while lying face-down on the MRI table, my breasts hanging indecently through strategically placed holes. No amount of professional success…could save me from indignities so many patients have endured through the years.”
She recalls how she’d always encouraged patients to enroll in trials. Hoping to practice what she preached, she decided to sign on to a trial, only to be horrified by the potential side effects mentioned on the consent form: nausea, vomiting, alopecia, diarrhoea, leukopenia, loss of fingernails.
Chemo left her feeling broken and helpless, sapping her desire for all her usual pleasures: reading, travelling, fashion.
It took a life-threatening illness to grasp the “critical importance” of quality of life in treatment, she says.
“Undeniably, breast cancer is a life-changing event; however, I’d never have predicted how it would change how I saw medicine,” she writes.
It’s a common theme among doctors who have found themselves on the other side of the equation. British oncologist Victoria Lavin recalls telling her patients, “You’re so brave; you can fight this”. And yet when she herself was diagnosed with breast cancer, it felt anything but a fight.
“I won’t be asking my patients to go into battle in future,” she writes.
After prescribing countless of chemotherapy, there were still things to learn when you actually had it yourself, she found.
“Intravenous dexamethasone makes your bottom tingle when administered. Subcutaneous filgrastim stings it you give straight from the fridge.”
Hair loss was another thing that in her practice Dr Lavin had tended to gloss over. Now she realised it did really matter: “It changes a person’s whole identity”.
Many of the things treating doctors tend to discount as trivial they suddenly realise are important when they’re on the receiving end. Unreturned phone calls, long waits and lack of communication can be frightening when you’re seriously ill. Psycho-oncologist and cancer survivor Dr Mindy Greenstein found it impossible to nail her radiologist down on what he’d actually seen on her breast ultrasound: “Suspicious” is all that he would say. When a biopsy is done and the surgeon says the results won’t come for several days, she finds herself tearful and upset.
Doctors often learn a certain distance when faced with seriously ill patients. But when they become a patient themselves, they can find that approach cold and dispiriting. An emotional patient is often patronised and quickly referred on to a psychologist, says Dr Greenstein.
“Oncologists have learned many things,” she writes of her own experience, “but apparently, comforting a cancer patient isn’t one of them.”
For most doctors it’s a jolt being on the other side of the equation. The role reversal of becoming a patient can hit at the self-esteem of a group not known for a lack of it. Some doctors may even feel an entitlement to treatment, purely on the strength of being a doctor.
When Adelaide-based rheumatologist Mark Awerbuch was diagnosed with acute T-cell lymphoblastic leukaemia, his only hope after chemo had failed was a bone marrow transplant. But when his haematologist denied him the treatment on account of its low chance of success, he felt cheated.
“I thought it was treacherous and and cowardly that a profession to which I had contributed for years, doing a lot of pro bono work, lecturing, mentoring, tutoring, and they turned their back on me and said no, we can’t help you.”
Dr Awerbuch eventually forked out hundreds of thousands of dollars for treatment in Israel, which proved to be successful.
Almost all doctors who have endured life-threatening illness say it’s changed their approach to medicine for the better. But it’s a conundrum: if being ill makes you a better doctor, what about all the doctors who have not had that experience? Are they worse for it?
Dr Kevin Campbell, writing on the experience of the doctor as patient, says he believes that time spent as a patient should be a part of medical education.
“Even though most physicians do their very best to show compassion, provide support and empathy, it is often not enough. Sometimes we must look through the eyes of those for which we care in order to better serve their needs.”