My mom has always worked hard. As a girl, she picked cotton every scorching summer on the South Texas farm where my 'wela' (i.e. grandma) kept house. In adulthood, she straddled both sides of the supposed (and silly) 'mommy wars.' She worked as full-time mom to my three sisters and me before taking care of other people's children as an aide in our small town's elementary school (working with the most difficult, troubled kids at that). Now on Medicare and about to retire after 30 years, she will have to continue working hard, as will my retired father. I'm not talking about the time they'll spend maintaining their home or raising grandchildren. I'm talking about the difficult work that they, like millions of others, grudgingly started as they began approaching 65 ' the work of managing their multiple chronic conditions. Luckily, they can still handle the load and take very good care of themselves. But what happens if it all becomes too much?
Think about it. If you are one of the 3 out of 4 older adults like my mom with more than two chronic conditions (she has COPD, arthritis, and heart disease), you probably take at least seven different medications and your pharmacist knows your face very, very well. You have to sort through different dosing instructions. You set countless appointments with your family doctor and your specialists, then have to drive somewhere else to get your blood drawn. (Last week, my father had to take his blood sample himself to FedEx for shipment to a processing center.) You try to get to the park to walk, and you plan your grocery shopping carefully to get the right low-sodium, low-fat foods. Not to mention the time and energy (and out-of-pocket money) you spend on understanding and paying medical bills.
Yet my parents, relatively speaking, have it easy. What if they had more severe conditions like dementia, or kidney disease requiring weekly dialysis? What if they were poor or disabled, living in a polluted neighborhood with no grocery stores with fresh food, and only spoke Spanish? (Luckily, my parents are bilingual.) In those cases, I'm not sure how my parents would manage to do what's needed to maintain their health.
Although all too common, the hard work of maintaining health and the social factors that impede it often go overlooked and unaddressed in our health system. Clinicians diagnose and prescribe tests, medications, and procedures, rightly expecting patients to take responsibility for their health. When some do not follow the doctor's advice, they are labeled 'non-compliant' or 'non-adherent,' like scarlet letters pinned to the chest. We should consider that not following doctor's orders ' not sticking to that low-fat diet, not taking all ten super-expensive prescribed medications, not following up with physical therapy ' might actually be a rational decision, given other competing priorities and goals, and the person's capacity to handle their care. It may be that we overburden patients with treatments that just don't fit.
I heard an excellent framing of the problems with self-care as issues of workload, patient capacity, treatment burden and fit at a symposium given by a very engaging Dr. Victor Montori of the Mayo Clinic. At the March summit of the Institute for Healthcare Improvement, he articulated the health care context that has led us to excessive treatment burden and adherence problems: increasingly expanded definitions of what is considered 'disease' and 'needs treatment,' and evidence-based but single-disease-focused guidelines that do not take multiple conditions or our uncoordinated health care system into account. He outlined the different kinds and amount of work doctors expect chronic patients to undertake. If patients followed American Diabetes Association guidelines, many would need to spend almost four hours a day on self-care. There goes retirement.
As a solution, Dr. Montori offered the concept of minimally disruptive health care: health care delivery designed to reduce the burden of treatment on patients while pursuing patient goals. It takes into account the personal, medical, financial, social and contextual factors affecting a patient's workload and capacity for self-care. It calls for moving away from provider-imposed goals like 'you should lower your LDL cholesterol, hemoglobin A1C levels, blood pressure, or weight,' to 'what are your goals?' which may be to feel better, live longer, or live independently.
Within this context, Dr. Montori also offered several tools for shared decision-making to find the treatment that best fits patient goals. The Mayo Clinic has carefully designed and is testing patient and provider-friendly decision-aid cards that weigh the pros and cons of different treatments for conditions like diabetes. They show patients what a regimen will mean in their real life, like whether they will gain or lose weight and how much they will have to pay. Patients can then choose what makes the best sense for them.
The concept of minimally disruptive health care and shared decision-making make great sense in the care of older adults. The concept fits perfectly with many of our grantees' efforts to move to patient-centered goals and quality measures, as well as HHS attention to the issue. Also, with recent pushes from the field to limit the overuse of tests and procedures (not to be confused with the many low-cost geriatric assessments that are currently underused), the ideas of minimally disruptive health care and shared-decision making may be ripe for wider uptake. This would be very helpful for older adults managing multiple chronic conditions, like my very hard-working mom, who deserves treatment that fits her needs.