Care Redesign
The Invisible Work of the Patient (08:05)

“I’m a clinician, and I am worried. And my worry is that, in pursuit of value, this objective of the health care industry, that we may fall for a perverse incentive built into it, and that is to take the work — the energy needed to create quality and outcomes — and to transfer that work to an invisible and free workforce: patients and caregivers,” says Victor Montori, a Professor of Medicine at Mayo Clinic.

It’s easy to assume that the work of patient care occurs around the hospital bedside, the work of doctors and nurses, and stops once the patient heals and heads home. But that idea is outdated. The majority of today’s patients live with chronic conditions; the average middle-aged person lives with one, and most people over the age of 65 live with two or more. Caring for these conditions takes place behind the scenes — not by the typical hospital bedside or in the office. “You’ll find it in the bathroom, in the bedroom, on the kitchen table, in places of work and recreation,” says Montori.

Because the work of patients and caregivers is invisible, there’s a temptation for providers to transfer additional work to them. That transfer may seem to improve the value of care because the work is now off the provider’s plate, but it comes with an unseen cost. The caregivers as well as the patients have to invest energy, time, and effort into that work.

What is the work of being a patient? “It’s the work of accessing care, it’s the work of using that care, it’s the work of enabling and enacting the self-care that will give us the outcomes that we’re looking for,” Montori says. He provides numerous examples of providers adding to that work, such as having patients be the conduit between doctors when electronic medical records don’t connect, having patients track medications that start at different times, having patients record their doctor’s appointments at home, and having patients review doctor’s notes at home on a patient portal rather than discussing them in person. The latter improves provider access and throughput by shortening patient visits, but for the patient, says Montori, “Now you have to go home and negotiate that portal and read these notes, which are not written for you. So you might as well learn our jargon, because we’re not going to change the way we dictate our notes.”

The capacity that patients and caregivers actually have to do all that work is fairly limited, and patients with limited capacity are at higher risk of becoming overwhelmed. They may feel the need to prioritize, resulting in some tasks left incomplete. Yet our response to those patients is to label them noncompliant. “This is not a problem of skin in the game and personal responsibility, or lack of engagement or activation,” says Montori. “It’s fundamentally a problem of capacity. And the fact that most people do not live to be great patients; they live to pursue their hopes and dreams.”

As we work on disruptive innovations that could improve the value of care, we need to do so in a way that allows for chronic care that is both maximally supportive and minimally disruptive of patients’ and caregivers’ lives, says Montori. “Clinicians need to have the wherewithal, working together with patients, to understand what is the matter with this person’s biology, and at the same time, what matters to this person’s biography.”

From the NEJM Catalyst event The Future of Care Delivery: Relentless Redesign at Providence St. Joseph Health, January 19, 2017.

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