by Carolyn Thomas ♥ @HeartSisters
Endocrinologist Dr. Victor Montori of Mayo Clinic describes two types of patients living with chronic illness who don’t follow their physicians’ advice when it comes to implementing recommended treatments or therapies. The first group may just not want to take the pills, or they want to try natural remedies instead, or they want to get better on their own, or they can’t afford their meds, or they just don’t trust that these recommendations will work for them.
But the second group of patients, Dr. Montori explains, may be working very hard to do everything their doctors have suggested (like taking prescribed meds, monitoring their vital signs, coming to all appointments – not only with doctors but with nurses or dieticians or other health care providers). Doing all that takes so much time and effort – on top of feeling sick a lot, juggling family, work and social life – that it can get to be too much.
So they just stop doing it.
Dr. Montori and his like-minded colleagues call this scenario the “burden of treatment” for patients.
” Right now, doctors have no way of assessing the burden of treatment. There’s no measurement, no way of knowing except through conversation. No real way of becoming aware of how difficult it is for patients to implement everything that every health care provider has asked them to do.
“As a result, patients are going through the system not complying with their therapy – sometimes because they don’t want to, sometimes because they can’t – but we treat them both as if they were the same.”
Which patients find managing this burden of treatment most challenging? Dr. Montori believes that a number of factors are at play, including:
“A patient’s education level, literacy, state of depression, pain, fatigue, social connectivity and supports, financial status – all of these affect a patient’s capacity to do the work. The workload can simply exceed capacity to cope.”
To illustrate what this burden of treatment may look like, let’s consider an average patient living with coronary artery disease among other chronic conditions. As Dr. Montori describes her:
“She is short of breath, she takes medications to control angina, she has diabetes. At the next visit, her blood sugars are out of control, so we intensify the therapy. We add additional drugs, we refer her to the diabetes educator, we ask her to monitor her blood sugars twice a day, and we ask the patient to come back for yet another follow-up appointment. So right there, we’ve increased the amount of work she has to do.
“The pharmacist reviews the patient’s drug purchase records, and finds out that the prescription for the additional medications – which were expensive – have not been filled because the patient cannot afford them. The trouble is that such patients often don’t mention to their doctors when they’ve stopped doing what they’re supposed to be doing.
“So the next time she sees the doctor, and her medical tests are not good, we check her blood sugar, cholesterol, blood pressure – and the patient is not ‘at goal’. What do doctors do? We intensify the therapy again! We give the patient more to do.
“And that’s just with one doctor. Imagine (as is often the case with patients living with multiple medical conditions) that there are a number of doctors involved. And each one is working at intensifying the therapy to achieve each of the goals of their disease treatment. The end result for this patient can be completely unmanageable.
“We need a different way of practicing medicine for patients.”
It turns out that there is a different way of practicing, and it’s called minimally disruptive medicine.
Unlike the way modern medicine is generally practiced today, minimally disruptive medicine would attempt to address this burden of treatment – particularly for those living with multiple chronic illnesses. As Dr. Montori says:
“Medical practice guideline parameters have been designed on a disease-by-disease basis. They work when you have only one or two conditions. But once you have multiple conditions, these parameters start being difficult and overwhelming to patients.
“We think of this patient response not as a moral character flaw or a patient failure, but as something caused by the way health care is delivered. We need to better handle this if we are to do our part in delivering care.
“What if these quality parameters end up causing more harm to the patient, and the patient realizes this and starts cutting back even more? What makes more sense is if parameters became more patient-centered. Define quality through the patient’s eyes, and not through the disease standpoint.”
Now let’s revisit that average heart patient again. Here’s how Dr. Montori says the practice of minimally disruptive medicine might approach her care:
“This may sound counter-intuitive, but we change the goal of her care.
“We decide with her that her main goal now is to reduce her blood sugars to the point where she is not having diabetes symptoms. It’s not optimal according to current practice guidelines – but for her, the priority is to make her feel better and to make her successful in having some control over her symptoms. Will she live longer? Maybe not, but that may be a secondary goal now.”
What Dr. Montori and his collaborators are working towards in minimally disruptive medicine is designing treatment programs for these patients around the patients’ own health care goals:
- to live longer
- to feel better
- to live unhindered by the complications of the disease or of the treatment
Sometimes these goals go together, he adds, but sometimes there’s conflict. Feeling better, for some, may mean not being able to live longer, and vice versa.
“One of the key aspects of minimally disruptive medicine is the need to become aware of the burden that our treatments cause on people’s lives. We know very little about it, but our international team is working toward clarity in this area.
“We think of the patient as having the capacity to do the work, and being exposed to a workload. We consider the workload involved in being a patient – and at the same time, in being human, being a parent, a spouse, a worker, a teacher, a coach. But all of these roles compete for the same capacity.”
When I asked Dr. Montori if he’s optimistic that current medical practice will be able to change enough to incorporate the key components of minimally disruptive medicine, his response to me was:
“I do not think that change will come quietly.
“I am focused on a patient revolution led by patients, in partnership with health professionals, to make healthcare primarily about the welfare of patients.”
“To just be a person, and not a patient anymore”
News flash: care improves when doctors consider the whole person
‘Healthy Privilege’ – when you just can’t imagine being sick
Why don’t patients take their meds as prescribed?\
Victor Montori, M.D., a Mayo Clinic endocrinologist and evidence-based medicine visionary, explores the need for less disruptive medicine especially for patients with multiple chronic medical conditions. Read an excerpt from his team’s article in the British Medical Journal, or visit the Minimally Disruptive Medicine website. And please read Dr. Montori’s book “Why We Revolt: A Patient Revolution for Careful and Kind Care“, winner of the 2018 PenCraft Award for Literary Excellence.
NOTE FROM CAROLYN: My book “A Woman’s Guide to Living with Heart Disease“ reads like the“Best Of” Heart Sisters blog archives. You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (if you use their code HTWN , you can save 30% off the list price).
16 thoughts on “Living with the “burden of treatment””
Great article and I wish I had seen it when it was originally published.
Indeed, the “homework” the physician assigns is just the tip of the iceberg.
Using Type 1 insulin-dependent diabetes as an example, patients who are making any serious effort at managing their blood sugars make thousands of micro-decisions throughout the day regarding medication dosages and timing, food timing, food types and portions, and physical activity (not just formal exercise, but anything that’s less OR more vs their usual activity).
The cognitive load is substantial. Diabetes decisions are always cycling in the background of the patient’s mind, just like a background process on your computer that chews up cycles from your CPU.
The level of constant self-monitoring and decision-making is probably unequaled by any other chronic health issue.
And it goes far beyond injecting insulin and doing blood glucose tests:
It means constantly “checking in” with yourself on how you feel in the moment, checking in with yourself on whether and what and when you should eat, checking in with yourself on whether walking at the mall means you need a little extra carb to avoid a future low, anticipating the rest of your day as you consider whether to treat a slight high right now.
It is never, ever on auto-pilot.
My observation is that the people who don’t “get” why patients might not be 100% ‘compliant’ have never actually lived with this kind of health issue, and they simply don’t understand the difference between living with a disease and letting it define your life.
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Well said, Leslie! You have no doubt read the Thomas Goetz piece in The Atlantic called The Diabetic’s Paradox in which he describes the relentless self-tracking and self-obsession required of many patients, and particularly of those who say 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.”
Thanks so much for sharing your comments here.
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Carolyn, had not seen the Goetz piece in The Atlantic – so thanks very much for sharing.
It’s interesting that he speculates that more/better tools/apps may lighten the burden. Short of cure or cure-like developments (ex: true artificial pancreas technology), tool improvements offer only incremental benefits. Plus, all too often, an improvement in one area just creates a new problem downstream.
(I also just HAVE to point out that Diastix urine self-monitoring predated glucose meters and was accompanied by exactly the same emotional baggage that T1s often deal with today! )
In short, it ain’t a tool problem!
Once you have key tools in place – typically, meter, pump, increasingly a CGMS – I believe the greatest aid in thriving with Type 1 is to be part of the empowered Type 1 community.
I’m not describing a typical support group as many traditionally think of it, where people share primarily emotional struggles with limits and constraints.
The community I’m describing is better characterized as having a “you can do it, DIY, git ‘er done” mentality. They’re all about self-efficacy.
For example, there are a number of Facebook groups for people w Type 1 diabetes who are serious recreational and pro athletes. They are chockful of real-world experience and expertise at a level of detail that no healthcare professional or smartphone app will likely ever have. And they offer the intangible emotional affirmation that makes such a difference in feeling like you’re not at the tail end of a perverse lifelong game of crack-the-whip.
Those groups do more to lighten the load of daily life for someone with Type 1 than any technology short of a cure ever will, IMO.
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Such important points – especially about seeking and finding online support/info that meets you where you live.
And here’s another post, hot off the press, by Dr. Danielle Ofri in The New York Times on “Doctor Priorities vs. Patient Priorities“. What do you make of this?
I do not have a heart disease but was diagnosed with type 1 diabetes on my 5th birthday. I am now 15 and take my insulin as well as kidney meds due to damage.
I feel that I do experience feelings of guilt and feelings of disappointment when I see my endocrinologist every 3 months. I feel it is sad that we have to “live up to” the expectations these doctor set upon us and that many (such as I) feel like we’re disappointing them in some way, though it’s for the benefit of ourselves.
I love the ideas presented here and hope they are implemented (even slowly) at some point in the future. 🙂
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Another great post, Carolyn. Imagine if at the beginning of every visit the physician asked, “What do you think our goal should be today? What are your most pressing issues? What’s working and what approaches that I’ve recommended are not working?”
Our doctors are our consultants and these are questions any consultant would ask.
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Wow! I experienced a wee frisson of excitement just imagining the thrill of hearing things like this from doctors!
On point yet again!
There is another patient – one who tries the doc’s recommendations but finds the side effects too difficult especially in light of all the other meds. So she takes herself off the problematic med for a few days, side effects resolve, emails doc, and gets scary phone call some days later.
This is my experience with statins – I have tried several and cannot accept the muscle pain and fatigue ON TOP of my MVD symptoms of pain and fatigue. My quality of life suffers on statins so I don’t take them. And yes I plow the same field again and again with the docs and insurance co. regarding my “compliance” as if I am a recalcitrant child.
If only it were so . . .
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Very good point, JetGirl. I wonder how many other patients do exactly the same because of side effects, but decide not to tell their docs precisely to avoid having to “plough the same field”.
I am right there with you, JG.
The side effects for all of my heart meds has made life unbearable. I have experienced exhaustion, kidney and liver damage, neuropathy, dizziness, nausea, muscle pain and numbness, gout, migraines, increased arrhythmia, foggy brain, pre-diabetes, fevers, rashes.
I am taking now only aspirin and Zombie beta blockers as all other drugs were stopped. I have heart disease and severe tachycardia but think my life would be very different if my primary health issue was treated as Obesity and my primary goal was to lose weight.
I believe many of my so called heart related risk factors would begin to improve and the need to medicate change dramatically. It is very difficult to lose this weight, I have put on so much since my heart attack 4 years ago, and the meds complicate my incentive and metabolism….with so many of the meds making things worse, finally the docs are beginning to mention nutrition …..
I work with 4 specialists and I begin to feel I am failing them. I mention all this because of the challenge of coordination of care, and my belief that something as seemingly simple as food being overlooked as a viable treatment plan.
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Hi Susie – “I work with 4 specialists and I begin to feel I am failing them” – that’s a very sad statement, isn’t it?