My 50-year old husband is an insulin-dependent diabetic who, over the years, has accumulated an array of chronic health conditions: his thyroid has failed, his cholesterol is high, and his cardiovascular system no longer works as well as it once did. Keeping these conditions in check requires him to be ever-vigilant about checking his blood sugar and keeping up with an increasingly complex and demanding treatment regimen in which he takes insulin with every bite of food, as well as a host of prescription and over-the -counter medications.
Some months are better than others he makes it to repeated visits with the endocrinologist, the lab, his primary care doctor, the pharmacy. He dutifully submits his mail-in prescriptions. And he keeps up with a full-time job and our full-time life that features five adult children and an 11-year-old.
I confess to days in which I play the role of diabetes cop, getting after him about the beer he still likes to drink or the exercise he does not care to engage in. I hate it when I do this, and yet it seems to be a role I have fallen' into, particularly when it seems that Erik is not sticking with the program'when he is, in terms doctors use and patients hate, non-compliant or non-adherent.
I had never thought of living with a chronic condition as a form of work until I interviewed Dr. Victor Montori, an endocrinologist at the famed Mayo Clinic. Dr. Montori and his colleagues, Carl May and Frances Mair, have begun to call for an approach to medicine that they describe as 'minimally disruptive medicine. Dr. Montori and sociologist Nathan Shippee have developed a conceptual model in which they characterize patients as having the capacity to do the work associated with their illness or condition and in which patients have the capacity to assume that workload. 'The juggling patients have to do is massive, and the degree to which health care is tailored to these challenges to accommodate them is minimal, says Dr. Montori.
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, worker, teacher, coach. All of these roles compete for the same capacity' Montori explains. A patient's education level, literacy, state of depression, pain, fatigue, social connectivity and supports, financial status'all of these affect his capacity to do the work. And being asked to take 12 medications, go to the pharmacy 35 times a year, see the doctor 10 times a year'we shouldn't be surprised when they can't stick to the plan. The workload simply exceeds their capacity.
Recognizing that patient workload can exceed capacity, Montori and his colleagues began to wonder how to right-size health care, how to collaborate with community resources to enhance capacity and to 'reduce treatment workload so patients can achieve better outcomes'the outcomes they want to achieve, not what the disease or doctor suggests they achieve.'' With the worldwide burgeoning of chronic conditions, Montori predicts that these problems of excess workload for capacity will begin to spiral out of control'but he suggests that a minimally disruptive approach to patient care might be one way of organizing care to better meet patient needs and hopes.
A major challenge to patients with multiple chronic conditions is to access, use, and implement self care. We run into problems of noncompliance or nonadherence. But we think of these 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.
Dr. Montori describes one study in which his group watched videos of patients as they made visits to their primary care doctors at Mayo. Again and again, patients told doctors that they were having trouble coming in for these consultations because of parking or transportation problems. Physicians would listen empathetically but offer no specific solutions. Or patients would complain that they had to take too many medications and the doctor would agree, but note that all of the medications were important. The underlying issues patients were expressing were not being addressed.
It is not easy, says Dr. Montori, to advance the idea of minimally disruptive medicine. To some, it may look like poor quality care, when you are trying to right-size an intervention to match the patient's capacity. As a diabetes doctor, I feel most uncomfortable, for example, when I'm working with a patient I know could benefit from an intervention, and yet we negotiate not to do it because we feel that it will be too much for the patient. You have to engage in shared decision-making.' This, says Montori, is very challenging, requiring physicians to develop strong and healthy relationships with their patients that allow for fine-tuning and shared decision-making.
"We wanted to make big changes [at the Mayo Clinic]'but that is extremely difficult to do," Montori says. The changes necessary to create minimally disruptive medicine require enormous fundamental changes in how we are organized to deliver care. He cites, for instance, one of his first patients with whom he took this approach. The patient and her husband both lived with multiple chronic conditions, and, as it turned out, received multiple surveys that are routinely administered as part of the Clinic's quality improvement efforts. The patient and her husband simply felt overwhelmed by the surveys they were being asked to complete. And yet, as Montori found, there was no easy way to stop the surveys from being sent. Not stopping them, he says, 'did not achieve patient centeredness.' In another case, a patient was making 30 to 40 pharmacy visits each year, which overwhelmed her. Dr. Montori and his staff moved her prescriptions to a mail-order system, which worked well until the patient's health care insurance changed and did not include the mail-order benefit.
Such seemingly simple elements of health care can have a tremendous effect on the work patients have to do. It is no wonder, Montori says, that 'the design and delivery of health care overwhelms even the most organized person.
He has begun to work with his trainees, asking them to assess patient capacity in their interactions with patients. This means learning more about the work they do, their living situation, whether or not they have dependents or caregivers, and so on. Trainees are encouraged to consider the workload created by the current treatment regimen and the effect prescribed changes will have on it. 'The point of the reflection is to consider the work they will add to the patient's life. We feel strongly that this will impact outcomes. So what do you stop [in one part of the patient's life] to make room for the new treatment? This forces trainees to prioritize what they are doing. It is a value-laden challenge, and the values of patients must be brought to bear. Trainees have to talk to patients about what matters most to them. And this is a fundamental change in the patient-physician interaction.
Minimally disruptive medicine asks trainees and physicians to 'figure out what matters. For diabetics, for instance, somewhere between very high blood sugar and very low blood sugar is the Goldilocks- spot: where we define the intensity of treatment as being enough to achieve the patient's goals while creating the smallest health care footprint in his life.'
'Patients with multiple chronic conditions face a tremendous amount of work. They are unable to streamline health care, to access it, or to use it for self-care so they can make it work for them. Then they begin to pick and choose their treatments, become apparently 'noncompliant', stop showing up for appointments, and end up with poor outcomes.
Minimally disruptive medicine, Dr. Montori has written, can 'inform policy and practice that enhance clinical and cost effectiveness and at the same time be easier, safer, and less costly for patients to enact in their own lives.'() In the real world of my life with Erik, understanding that managing his disease is, in fact, a type of work, gives me a bit more to go on than just pestering him to follow his doctors' orders and more sense that he is working hard, in his own way, to manage his disease.
. ' May, C., Montori, V., & Mair, F. (2009, August). We need minimally disruptive medicine. British Medical Journal, 29 (339), 485-87.