Some lively online discussions recently, initiated by yet another interesting article from Dr. James Salwitz called Why Is The Doctor Angry? This time around, Dr. Salwitz tells the story of one of his patients who had become very ill, but then emailed a doctor 3,000 miles away in California rather than consult his own doctor as he became sicker and sicker. The California doctor forwarded the email back to Dr. Salwitz, who immediately sent his patient to hospital with multiple system failures. Dr. S 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.
“When I asked why he had not called, he gave the vague answer, ‘I figured if I waited, I would feel better.’ When I asked if he understood the previous instructions he had received, to contact me with any problem, he said yes, but somehow this acute event seemed not to apply.”
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 physical 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.
Consider the results of a U.K. study on people living with chronic obstructive pulmonary disease (COPD).
Researchers were particularly interested in understanding why people who had been prescribed ambulatory oxygen (or AO) for this chronic and progressive lung disease often fail to use it. If you have COPD, bringing your portable oxygen tank with you when out in public can help you remain mobile and socially active, while preventing oxygen desaturation. But here’s what the researchers found:
“One of the most interesting findings was the dissonance between what health professionals believe patients are doing, and the reality on the ground.
“It has been argued that non-adherence has less to do with patient culpability and more to do with failure to consider individuals’ circumstancesat the time of prescription.
“In this study, many participants still enjoyed active social lives, but found it daunting to use their ambulatory oxygen systems in public, as they feared being perceived as ‘different’ or an ‘invalid’.
“The majority solved this dilemma by not using their AO.”
COPD already has unique symptoms that draw public attention to the condition.
For example, the COPD patient may be seen as breathless, or coughing heavily, or may need to carry overt medication with them (such as AO, metered dose inhalers, or nebulizers) – all of which are often associated with stigmatizing consequences. And as one of the study participants said:
“I wouldn’t like people looking at me, I just feel embarrassed about it.
“I don’t want other people to know I’m ill.”
In essence, what the researchers found suggests that nothing says “ill” like somebody carrying around ambulatory oxygen in public, and that these folks simply feel the need to just be a person, and not a patient anymore.
A Michigan study(2) published in The Journal of General Internal Medicine also looked at the burden of treatment that’s specifically experienced by those diagnosed with diabetes.
Researchers described a number of critical findings. For example, patient views of this burden were the strongest (and indeed, only) consistent independent predictor of whether or not they stuck with prescribed meds and/or their willingness to accept insulin therapy. Non-drug diabetes management such as diet (5.4%) and self-monitoring of blood glucose (39%) was particularly low for these patients.
And almost 13% of study participants who had been recommended insulin had refused it altogether.
The Diabetic’s Paradox, Thomas Goetz‘ 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.”
Consider also Dr. Victor Montori and his Mayo Clinic-based team who are working on a revolutionary health care concept called Minimally Disruptive Medicine. It’s hard enough to live with a chronic condition like diabetes. But sometimes doctors make it harder, he says, by piling on more tests and more treatments than the patient can bear.
In an era of checklist medicine, as reported recently on Minnesota Public Radio, Dr. Montori is trying to push the pause button. He believes that, before doctors pull out their prescription pads, they should have a heart-to-heart talk with patients who have complex conditions about how much medicine they really want to put up with.
My gut feeling is that MDM may at first blush seem essentially contrary to what most doctors believe in and train for and work towards every day – what Dr. Salwitz described in his blog post as “the tear-down-the-walls and go-to-war passion” inherent in making patients better.
But Minimally Disruptive Medicine also acknowledges what some physicians may not: the overwhelming burden of treatment that so many patients live with on a daily basis – a burden that can simply exceed a patient’s capacity to cope, and may not in fact even guarantee getting better at all.
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.
A shift towards the medical establishment embracing the concept of Minimally Disruptive Medicine is not going to be easy. As Dr. Montori says:
“I am focused on a patient revolution led by patients, in partnership with health professionals, to make healthcare primarily about the welfare of patients.”
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.
NOTE FROM CAROLYN: I wrote much more about how we adapt to going from being a “person” to 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 my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price.
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. doi: 10.1001/jama.2013.3519.
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”?