New Jersey oncologist Dr. James Salwitz, in his blog post called Why Is The Doctor Angry?, tells the story of the day that one of his patients became very ill. Instead of calling Dr. Salwitz, however, his patient emailed a doctor 3,000 miles away in California as he became sicker and sicker. The California doctor forwarded the emails back to Dr. Salwitz, who immediately sent his patient to hospital with multiple system failures. Dr. S said that he felt angry about his patient’s behaviour, explaining:
“Did I look him in the eye and tell him that I was upset, that he had neglected his own care by not reaching out and in doing so he violated the basic tenants of a relationship which said that he was the patient and I was the doctor?”
“Did I remind him what I expect from him and what he can expect from me? You better believe it – I was really pissed!”
My own question to Dr. Salwitz was: “So did you ever find out from the patient WHY he did not reach out to you?”
Dr. S answered my question like this:
“He was in remission and at the end of treatment. I think he was hoping to move on from the burden of medical care and just be a person and not a patient anymore. His timing was nearly fatally off.”
Although feeling understandably “pissed”, this doctor appears to have a genuinely astute understanding of what could have possibly motivated his patient to behave as he did – encapsulated in his sense of this man’s profound need to “just be a person and not a patient anymore.”
Just be a person, and not a patient anymore.
How many times, I asked myself while reading about this patient of Dr. Salwitz, have I too wished in vain for precisely this?
How often do any of us living with the relentlessness of chronic illness and debilitating symptoms and drugs and fear and treatments and medical appointments and tests and hospitalizations and exhaustion dream longingly about life as it used to be, before we became patients?
I recall an incident that happened a few weeks after my heart attack. Still reeling from a shocking diagnosis, ongoing symptoms and accompanying sky-high anxiety, I stormed around the apartment one day in a fit of pique, gathering up all my get well cards and bouquets of flowers. I trashed the lot of them.
I did not want any reminders in my home that some kind of invalid lived here. I was sick of being sick, and I wanted my old life back, thank you very much.
I wanted to just be a person, and not a patient anymore.
(It didn’t work, by the way. I was still a heart patient, albeit now in a tidied-up apartment).
At about the same time, I met a man in my cardiac rehabilitation group who had just passed the one-year anniversary of his quadruple bypass open heart surgery. He confided to me one day at rehab that he had recently decided to stop taking all of his heart meds. On top of that, he had started smoking again.
I remember looking at him as if he had just sprouted two heads.
“Why don’t you just jump off a cliff then and get it over with?” I wanted to scream at these suicide-on-the-installment plan choices. But it turns out that he is not alone.
A recent Canadian study(1) on over 7,500 survivors of cardiovascular disease in 17 countries found that:
- 18 percent continued to smoke
- 65 percent did not exercise
- over 60% did not improve their diet
But now, five years later, I think I get what those survivors (and my cardiac rehab buddy) were going through.
The Diabetic’s Paradox, Thomas Goetz‘ famous article in The Atlantic, reported on a study that described the reality of decades of self-tracking among those living with diabetes, many who say that they “loathe” keeping daily track of their illness:
“In the case of diabetes, the distaste falls into three categories: Self-monitoring for diabetes is an unremitting and unforgiving labor; the tools themselves are awkward and sterile; and the combination of these creates a constant sense of anxiety and failure.”
See also: Living with the “burden of treatment”
Overburdening a patient can lead to what researchers call structurally-induced non-compliance with treatment recommendations, in which it becomes progressively harder for patients – especially those living with multiple chronic diagnoses – to meet the demands that their caring – and increasingly frustrated – physicians inadvertently place upon them.
Meanwhile, back to Dr. James Salwitz and his article:
“The practice of medicine for most doctors is fueled by a passion to help. Just as we expect a lot of ourselves, we darn well expect a lot out of our patients.”
And that sentiment, in an odd sort of way, may well be the key to understanding the under-appreciated differences in health care goals between the physician offering the best of care and the patient who seems to be dismissing that offer.
This is particularly problematic in chronic care, which in terms of human history is a relatively new concept: a century ago, our average lifespan was about 50 years. Our ancestors tended to die from acute health crises involving infections, epidemics, childbirth or horrible industrial accidents. Few lived long enough to develop the chronic illnesses of today.
We all know that following doctor’s orders is a clear expectation of being a “good patient“. Not doing what your doctor recommends – or not even reaching out to your doctor when you’re in serious trouble – just seems crazy, doesn’t it?
But maybe, just maybe, as doubtful as this possibility might seem to our physicians, it happens when the patient just wants to be a person again.
Embroidery Image by Tessa Parlow
(1) Teo K et al. “Prevalence of a healthy lifestyle among individuals with cardiovascular disease in high-, middle- and low-income countries: The Prospective Urban Rural Epidemiology (PURE) Study” – Journal of the American Medical Association. 2013 Apr 17;309(15):1613-21.
(2) Sandeep Vijan. “The Burden of Diabetes Therapy” – Journal of General Internal Medicine 2005 May; 20(5): 479–482.
.Q: Have you experienced that urge to “just be a person, not a patient anymore”?
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 bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 20% off the list price).