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February 13, 2019

Coping with the “work of being a patient”

By Caitlin Doran

There’s no getting around it: being a patient is hard work. And it gets even harder for patients living with multiple chronic conditions.

This “work” is made of up all the responsibilities and tasks doctors ask patients to take on in order to access and use health care and in order to successfully carry out self-care. “The burden of this labor can be overwhelming for some patients, which can directly affect their health, outcomes, and overall quality of life,” says Kasey Boehmer, Ph.D., a health services researcher at Mayo Clinic.

Mayo Clinic Public Affairs recently sat down with Dr. Boehmer to talk to her about the work of being a patient and some of her most recent research on a new concept called “capacity coaching,” including a paper recently published in Mayo Clinic Proceedings.

What is the work of being a patient?

The work of being a patient is made up of a lot of little things. There are the tasks themselves, such as taking medications, making appointments, and implementing dietary change. But beyond that, there’s also the mental, physical and emotional labor required to make sense of the tasks that have been assigned.  Some of these can include:

  • Figuring out how “being a patient” fits into an individual’s self-identity. The patient may need to adjust their concept of themselves to include their disease, which can be a mental and emotional challenge. For example, “I am an immigrant to the United States living with diabetes” or “I am a new mom living with depression.”
  • Planning how to accomplish the tasks. This can require complex organization and logistics, and the tasks may need to be performed daily or even multiple times per day.
  • Finding the resources, such as money or transportation, necessary to complete the tasks.
  • Enlisting social support and help from friends and family.
  • Taking time to reflect on success (or lack of success) in carrying out the tasks. Every day the patient has to decide whether they feel capable to continue with the tasks the next day.

That’s a lot of work! And it can be very complex, especially for patients with multiple chronic conditions.

What is capacity coaching and how does it help with the work of being a patient?

Shared decision making involves educating patients so they can work with clinicians to make decisions about their care. Mayo Clinic researchers advocate for tools that promote a conversation during the visit (called conversation aids), and not simply provide information to the patients beforehand for them to make a decision themselves (referred to as patient decision aids).

Capacity coaching is a discipline designed to help patients adapt and thrive when living with chronic illness. The idea is to help the patient function optimally: managing their health while also living a meaningful life. 

Sometimes, patients can get overwhelmed with all the work they’re asked to do, which means their “capacity” to adapt and thrive is low. The coach will work with a patient to help reduce their burden, enhance their capacity, or both. This might involve adjusting a patient’s treatment schedule and medications so that the patient is better able to manage them. It might also involve helping a patient figure out how to enlist the help they need to carry out the work. What is needed will vary from patient to patient.

How is capacity coaching different from health and wellness coaching?

Health and wellness coaching tends to focus on achieving specific health or lifestyle goals, such as losing weight. And it tends to happen outside of overall patient care. Capacity coaching, on the other hand, is focused on helping patients learn how to adapt and thrive in general,  in the face of important changes to their health. And it is designed to be integrated with overall patient care. Ideally, it should be delivered by a member of the patient's health care team, such as a doctor or nurse.

What inspired you to study capacity coaching?

I work with a research team in the Knowledge and Evaluation Research Unit at Mayo Clinic, where we’ve been developing a model of health care that helps patients find balance between workload and capacity. We have been collaborating with health and wellness coaches at the Mayo Clinic Dan Abraham Healthy Living Center to find new approaches to coaching that better meet the needs of patients with multiple chronic conditions. That’s where capacity coaching came from. We think capacity isn’t fixed, but is something that can be collaboratively managed by the patient and their care team. We think better capacity is something that can be taught.

What’s next in your research on capacity coaching?

We’ve recently been working on a capacity coaching pilot with two Veterans Administration medical centers and we expect to publish our result soon. After that, we plan to pursue some larger trials and to partner with other medical centers to learn how to best apply this practice in patient care.  We need to study the ways capacity coaching affects patient health outcomes and quality of life, as well as how it impacts the functioning of primary care teams.

What impact do you hope your research will have for patients and their health care teams?

I think it’s important to recognize that we ask a lot of our patients. We need to raise awareness of that and ask ourselves how we can provide better support. One day, I hope that capacity coaching will be part of the care every patient receives.

Learn more about capacity coaching

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Tags: Findings, Kasey Boehmer, Mayo Clinic Proceedings, News, People, shared decision making

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