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.”
NOTE: Are you living with a chronic or debilitating illness? Take this Burden of Treatment survey.
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?
Q: Are you living with chronic or debilitating illness? Take this Mayo Clinic-based ‘Burden of Treatment’ Survey.
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. UPDATE: read Dr. Montori’s new book “Why We Revolt: A Patient Revolution for Careful and Kind Care“.