An older patient recently told me that she spent 80 days over the past year in a doctor’s office. This represented over 20 percent of her life. She was relatively well but had several chronic medical conditions that required frequent office visits. In addition to these visits, she navigated scheduling, prescriptions, laboratory testing, and copayments.
Her experience is not unusual. For example, among patients with diabetes (a common chronic medical condition), a survey found that it would take nearly 4 hours per day to complete all guideline-recommended tasks (e.g., measuring blood glucose, taking medications, meal preparation, foot care, exercise, scheduling medical appointments). Extensive time for such tasks has also been documented for other chronic conditions ranging from chronic heart failure to cancer. This “work” of being a patient, also known as treatment burden, is distinct from the burden of the disease itself. Treatment burden includes not only attending medical visits but also undergoing diagnostic testing and procedures (and the travel required for them), taking medications, adhering to other physician recommendations (for example, dietary restrictions, and daily weights), navigating the complexities of health insurance, and coordinating between specialists who often have conflicting recommendations.
As expected, treatment burden is higher among older patients with multiple chronic medical conditions requiring several subspecialists’ attention. Paradoxically these patients also have some of the highest barriers to engaging with the health care system – for example, aging-related impairments in mobility or cognition can make it difficult to attend medical visits or to follow detailed instructions. Unsurprisingly, studies have found that adherence to doctors’ recommendations suffers in light of high treatment burden; people become overwhelmed.
Can we make things easier for our patients? One potential path forward is the concept of minimally disruptive medicine – an approach that attempts to minimize treatment burden while maximizing health outcomes that matter to patients. Specific examples include deprescribing medications of marginal benefit, engaging with community services (for example, assistance with transport to medical visits), and consolidating subspecialists to retain only essential ones. Telemedicine may also help overcome many logistical challenges older patients face (e.g., navigating traffic and parking). However, in my practice, I’ve seen many challenges with this paradigm due to vision or hearing impairments.
Another principle of minimally disruptive medicine is that patients’ goals of care – and what matters most – should be elicited to design treatment plans aligned with these goals. Paradoxically, these goals are sometimes at odds with metrics that doctors and health systems set as priorities. For example, a health system may set an ambulatory quality measure that all patients with dyslipidemia be prescribed a statin medication. Still, a patient may choose not to take one because of pill burden, side effects, or limited life expectancy (or all three). There is currently no established way to reward doctors for providing care that aligns with such patient goals (and, conversely, to avoid penalties if they do not meet quality metrics because of this type of care).
Addressing the problem of treatment burden will require systemwide efforts – for example, considering the burden of treatment in clinical practice guidelines, as some have advocated for. Successful demonstration projects that place patients’ priorities first can also influence payors and health systems to believe that these models of care are effective. In the meantime, in my practice I try to do small things for my patients – for example, coordinating labs, imaging, and a follow-up visit all on the same day or emailing other subspecialists so that we’re all on the same page about the care plan. While these small steps are not enough, considering our patients’ treatment burden in what we do every day is an important start.
John A. Dodson is a cardiologist.