“To just be a person, and not a patient anymore”

~ Carolyn Thomas

by Carolyn Thomas  ♥ @HeartSisters

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.

 

See also:

“We are all patients.” No, you’re not.

Knowing and Going: six reasons for treatment-seeking delay

The new country called Heart Disease

Living with the “burden of treatment”

‘Healthy Privilege’ – when you just can’t imagine being sick

Why don’t patients take their meds as prescribed?

Six rules for navigating your next doctor’s appointment

Why don’t patients listen to doctors’ heart-healthy advice?

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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.

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Q: Have you experienced that urge to “just be a person, not a patient anymore”?

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Published by Carolyn Thomas

27 thoughts on ““To just be a person, and not a patient anymore””

  1. You hit the nail on the head with this! I should say struck a nerve now that I have neuropathy to add to my list of illnesses…TIA, 2 heart attacks and stents, microvascular disease, COPD, celiac disease, diabetes, and currently had cataract surgery that went horribly wrong with an abrasion. They had to give me oxygen between asking me if I was a DNR patient. Told them “let me think about that a minute”!

    Add to that 20 pills a day, inhalers and insulin. My 38 year old daughter died in 2020 and we buried my husband less than a year later. I quit! One of my Drs wants to to do an endoscopy and colonoscopy and I cancelled that along with another cataract surgery…. blind in one eye and can’t see out of the other. Now let’s throw in a pandemic. Oh…and my mental health world.

    Haven’t had a drink since 1987 but it’s starting to look like an option some days. AA frowns on that, though. Yes, I just want to be a person again and stop beating myself up for not being grateful for what I DO have….my dog, my son and grandsons and wonderful neighbors who allow me on occasion to hold them hostage so I can practice not complaining.

    I have more Bibles than I can count, apparently the first one didn’t work. I just want a new life. I refuse to accept this as a “new normal”. Thank you for being there. I found your blog in 2017 after my first heart attack and the world continues to spin, the dog still barks and the birds still sing.

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    1. Hello Pam – wow! you had to respond to an “Are you a DNR patient?” question in mid-CATARACT surgery?!

      As I was reading your words, I couldn’t help but wonder why some people seem to get way more than their fair share of medical crises, while others (we call this group the “Healthy Privileged”) seem to tap dance through life, barely touched by any! These are also the folks who seem utterly unable to understand what it’s like to live with chronic illness (or why poor people can’t just pull up their socks and stop being poor).

      I love how you write (e.g. holding your neighbours hostage to practice not complaining). I laughed out loud while reading that, even as I was feeling terrible because you have had to go through so much suffering – most especially of course the tragic deaths of your daughter and then your husband. I’m so sorry for your unspeakable losses.

      It does still surprise me some days that the world continues to spin! And yet it does.

      Take care of your dear self, and stay safe out there. . . ♥

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  5. We’re singing from the same page. 🙂

    I’m convinced that doctors and patients would understand each other much better if we could all just sit down and communicate honestly, without judgments or assumptions.

    Excellent piece!

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    1. Thanks so much, Anne. And I agree with you. There was an interesting response to Dr. Salwitz’s original post which guessed at his patient’s motivation (a possibility I hadn’t thought of): maybe the patient has his Bucket List in mind, decides to live out his final days in the California sun, wants to line up a California doc before he moves: could that be why he didn’t go to Dr. Salwitz for help? Maybe he wanted no more “tear-down-the-walls and go-to-war” aggressive treatment but didn’t know how to tell his doc that? Doctors simply cannot assume that all patients want or need that level of pro-active life-saving-at-all-costs care.

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      1. And sometimes we patients don’t KNOW what we want. We just want it all to go away. Lord knows I’ve dropped a few bucks on voodoo healers. To no avail, of course!

        JG

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  6. You struck a chord… Recently diagnosed with a rare, chronic disorder, I’ve been really struggling with that very topic.

    You want your body to function as it’s supposed to instead of being limited by your condition. Sometimes I wonder if it’s not better to have a condition others can clearly see so they know you’re not making everything up…

    But you can pretend to be more normal when the struggle is more internal… Eh, it’s a grass is always greener sort of situation. Thank you for the food for thought!

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  7. Very well written, nice post. Don Berwick, previous head of Health and Human Services, said that people actually do not want health care, none, not at all, zip.

    Health care costs money, takes time from other things, often hurts, and truly we just want to be healthy without any doctors.

    The real question is how do people suppress that primal feeling?

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    1. Thank you so much for reminding us of Dr. Berwick’s astute observations. He was SO correct! I love your website, by the way. Would love to subscribe to email notifications for each new post but couldn’t find a ‘subscribe’ button. Please insert one!

      And your last question here is truly brilliant. Maybe we’ve been asking the wrong questions all along . . .

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  8. Carolyn,

    Thanks for this post. I’ve just been diagnosed with coronary microvascular disease and had a pacemaker implanted. I have felt the multitude of emotions you’ve discussed, and the desire to turn back the clock.

    I have several other chronic conditions, and feel the burden of each new diagnosis. At times, I want to just flush all the meds down the toilet, but know I shouldn’t. I just keep going forward, looking for blessings in each day and thank God for the wonderful people around me.

    And, I’m grateful for people who share their stories on the web. It’s been so helpful to know I’m not alone.

    Thanks.

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    2. There are 2 of us in my household with long-term chronic diseases. Him (74) – acute COPD, type 1 diabetes, heart disease. Me (72) – pulmonary sarcoidosis, type 2 diabetes, heart disease.

      I am the ‘pill lady’ – I put out the daily pills for both of us every morning. Talk about wanting to throw them all down the toilet – every day!!!!!

      And then there are the two oxygen concentrators going 24/7 plus the tubing all over the house. When I do go out, I frequently do not carry my mp6 tank. He does take his poc.

      This whole thing has gotten very old – especially to us who are already on the way to being old. A blessing – yes when one is reasonably healthy.

      But I am trying to look at the good side of it all and when I find it I will let you know!!!

      Funny thing about doctors – they are VERY uncomfortable dealing with their older patients. It’s almost like they know we won’t be around a lot longer so why go to all the effort – theirs or ours. It’s a new and different place we find ourselves in now and none of us are quite sure how we really feel about it all.

      Yes – it would be good to be a person and not a patient anymore. I wonder if either of us will be at that place again. Just random thoughts…

      Thanks for this article.

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      1. Thanks so much for sharing your thoughts with us. Like so many 70-somethings, Francene, you seem to be finding yourself as both the patient and the pill-dispensing caregiver. Interesting observation about doctors and their apparent discomfort with their aging patients. That’s why gerontology is such an (increasingly!) important specialty!

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      2. Francene, I am a geriatrician so your comment gives me such a pang!

        I love working w older patients but before I trained in geriatrics, I found it scary and overwhelming…the older patients had SO many problems and I didn’t know
        a) how to deal with the sheer volume of issues in a short visit, and
        b) how to deal with some of the symptoms, like pain & disability.
        Fortunately, a year of clinical geriatrics training made a big difference.

        It’s really terrible that so many older patients are unable to get the care they need and deserve. Most doctors are not equipped…they don’t have enough time in the visit, and they may not have been taught the needed skills 😦

        But there are now efforts ongoing to provide clinicians with better training and support to help older people, or people with multiple chronic illnesses. So hopefully things will get better soon…

        Carolyn, this post is GREAT. Absolutely true that our focus as clinicians should be on figuring out the patient’s life circumstances so that we can help them create a feasible management plan.

        And, we clinicians need to be more supportive and understanding of patients’ efforts.

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        1. Thanks so much Dr. K for weighing in here with your interesting perspective as a physician. I wish more doctors were like you. I mean, I REALLY wish we had more just like you! Here in Canada, for example, we have thousands of pediatricians – yet only about 250 docs trained in geriatric medicine. As we Boomers age, this imbalance is a recipe for utter disaster.

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        2. Thanks so much for such an encouraging reply. As long as we have doctors with your kind of attitude, Dr. Kernisan, then there is hope for us struggling geezers! I don’t really believe that other doctors who are ‘non-sympathetic’ mean any harm. I just believe they are afraid.

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  9. Thanks for this discussion, and for the introduction to Dr. Salwitz.

    The desire to get on with life is a powerful motivator of all sorts of behavior. I was, after all, the one who bicycled in the Rocky Mountain between chemo treatments.

    Then there is my own father: a sort of positivity was fundamental to his character. He refused to consider that anything at all could be wrong with him until the first of many collapses and stays in the cardiac ICU. He had sleep apnea and congestive heart failure (they thought the second stemmed from lack of treatment of the first) and refused to use both CPAP and AO outside of the hospital.

    To him, the AO was public admission that he was an invalid, which was anathema to every fiber of his being. Also, he was convinced that if he used the machines at all he would become even more dependent on them, and that he would not tolerate. He was going to live a normal life, damn it! Of course, it was Mom who always had to pick up the pieces.

    Still sorting through all those lessons…

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  10. Oh. Carolyn, another post too close to the bone . . . some days I just want to step away from the chard and embrace some sugar!

    To be “normal” again – what a dream . . . what a fight to just acknowledge that I am not and cannot be “normal”.

    And some days these docs just ask too much of us patients. Not another instruction, another med, another consult; just leave me be.

    JG

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  11. Very interesting topic. At the end of the day, doctors are strangers and patients need to develop a better relationship with them. The attitude of I can deal with it probably led to the heart attack.

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