Susan Edgman-Levitan, PA, is Executive Director of the John D. Stoeckle Center for Primary Care Innovation at Massachusetts General Hospital. She co-authored — with Michael Barry, MD — the influential article that first urged clinicians to ask, “What matters to you?” as well as “What is the matter?” In the following interview, she shares the personal experience that led to this groundbreaking idea and how to counter skepticism about putting “What Matters” into practice.
Was there an experience you had that inspired the “What Matters” idea?
Both Michael and I wanted to emphasize how the concept of involving patients in decision making about their care is critical if we expect people to understand how to manage their health conditions and take care of themselves. It also grew out of my own experiences as a patient.
I was diagnosed with rheumatoid arthritis when I was 20 by a well-known rheumatologist. I was given a lot of directions, but no information about why I was supposed to do anything or how it would help me. Basically, he recommended that I take some aspirin and go to bed. As a sophomore in college who was very committed to my education, the last thing I wanted to do was go to bed, although I was having the worst pain I’d ever had in my life.
Also, no one helped me address the emotional part of the diagnosis. I was shocked that my body was failing me, and I also knew that my great grandmother died very young of cardiac complications from rheumatoid arthritis. So, I was terrified the minute I heard the diagnosis.
I thought people weren’t taking me seriously, so I tried seeing other rheumatologists. I kept having the same experience. I also noticed that I was always surrounded by people my grandparents’ age in the waiting rooms. I decided the doctors didn’t know how to take care of young people, so I began to trust them less and less. Finally, I decided I was on my own and stopped getting any care at all.
Five years later, I was not in good shape and realized I had to do something different. I finally found a doctor who — when I said I wanted him to be my partner — was incredibly happy to talk with me about my goals and how to achieve them.
My experience brought home the importance of clinicians understanding what a person cares about and their experience of illness, so they can tailor their care or recommendations. Patients want help living the life they want to live. It’s also helpful to understand a person’s perception of their own illness. Clinicians may not be aware of these things unless they ask.
How do you respond to clinicians who worry that asking, “What matters to you?” will start a discussion that will take time they don’t have or will complicate the situation?
This is an important question because these concerns are often behind the first question I often get asked: “How do I [ask, “What matters to you?”] in real clinical practice?” There are many studies that have found that when physicians get good training about how to manage a clinical encounter and learn how to talk with patients about what is most important to them up front, it saves time. They get more useful information that helps them make the right diagnosis and develop the most appropriate care plan. It also helps develop a partnership that leads to better outcomes.
Clinicians also worry that if you ask what matters all they’re going to hear are things that they can do nothing about. In the inpatient setting, many of our physicians and nurses worry that the person’s going to say, “I just want you to cure my disease.” In fact, most patients understand that may or may not be possible.
Much of the work that has gone on internationally with spreading the “What Matters” idea underscores that patients often just want to have some control over what’s happening to them. What patients ask for are usually easy to do. It may be their favorite meal. It may be shutting the door when you leave their hospital room. It may be introducing yourself more than once because the patient is having trouble remembering everyone’s names and what they do.
What is an example you can share to help illustrate how discussing “What Matters” can make clinical care more effective and save time?
We have many examples in primary care because one of the main components of the patient-centered medical home — especially for people with chronic conditions — is creating a care engagement plan that asks the patient what matters most to them. What are your goals for managing your health problems? What are the barriers to reaching your goals? What helps you achieve your goals? How can your care team help you?
One of our primary care doctors was talking with a patient whose biggest concern was erectile dysfunction. The clinician’s biggest concern was this person’s weight. He was trying to figure out how to help his patient lose weight, so he suggested a walking plan.
When he brought this up, the man told him he had trouble walking because of pain in his lower legs. It turns out the patient had significant vascular disease that was contributing to his erectile dysfunction. The conversation asking him what mattered to him uncovered a clinical issue that could then be treated.
Discussing what matters also uncovers a range of issues care teams may not otherwise learn about, including major challenges — like food insecurity or difficulty paying for medication — that get in the way of treatment goals.
We’re celebrating “What Matters to You?” Day in North America on June 6. How can an organization build the “What Matters” ethos into their work every day?
- Ask clinicians and staff what matters to them. How can we can make their experience delivering care better? I’ve never seen an organization that provides exceptional patient- and family centered care that isn’t also a great place to work.
- Help clinicians and patients develop a new set of competencies. Everybody on the clinical care team needs to understand better how to have “What Matters” conversations with their patients. I’ve seen this in my work on patient engagement in the US and internationally. We need to help them learn how to elicit people’s values and preferences, and how to clearly communicate the risks and benefits of their recommendations. Patients also need to learn new skills, including how to prepare for medical visits by prioritizing their questions, reviewing their medications and how they take them, and learning how to speak up when they don’t understand recommendations or the next steps in their care.
- Hardwire helpful tools. Many organizations are redesigning the whiteboards in patient rooms, for example, so it can include information about what’s important to the patient so everyone who comes in can see it. This is happening in a lot of pediatric settings. Some organizations have templates designed for their electronic medical record that include a field for information on what’s important to a patient.
What’s important for those skeptical of the “What Matters” concept to understand?
Repeatedly, doctors, nurse practitioners, physician assistants, and others who provide direct care will say, “I already know what matters to all my patients.” Once they ask the question, though, they find out in a nanosecond that in many cases they had no idea what really matters to their patients.
Once they do understand, they see how this information can fundamentally shift how they provide care and how they interact. They see how it creates a better partnership. Many people have told me that, once they started asking, they couldn’t imagine going back to not doing it because it provides such rich information that’s essential to providing good clinical care.
I am amazed and inspired by the enthusiasm of the people leading this work around the world. Understanding what matters to their staff and patients has engendered a myriad of creative and fun interventions and events: potlucks where staff bring their favorite foods, new tools to help patients and families express their wishes, sharing of resources across large institutions to help support and meet patients’ needs, and even a plan for a worldwide Twitter “wave” (#WMTY19) to celebrate the different WMTY events around the world!
Why have people around the world embraced the “What Matters” concept?
[IHI President Emerita and Senior Fellow] Maureen Bisognano is an incredible influencer and she’s spread this idea in enormously creative and inspirational ways. It’s also been an easy way for everyone in a health care system to make a difference.
I’ll never forget hearing [National Clinical Director, Scottish Government] Jason Leitch talk about their experience with spreading “What Matters” in Scotland. He noted how many patients describe the kindness and support they get from people who are sometimes overlooked by those at the top of the health care delivery system hierarchy, like people in food services or housekeepers. We’re now training more of our staff to help them understand how their interactions and behaviors also contribute in important ways to the experience of patients and families.
The basic “What Matters” concept needs little or no adaptation. It helps us reconnect with our passion for caring for people. It buoys us despite the challenges we face in our respective health care settings. I can’t imagine any health care setting in the world where understanding what matters to patients isn’t essential.
Editor’s note: This interview has been edited for length and clarity.
On June 6, 2019, join IHI as we celebrate "What Matters to You?" Day. Read the weekly IHI newsletter (sign up) and follow us on Twitter (@TheIHI, #WMTY19) to learn the latest.