January 31, 2017 — Blog Post
Effective Patient Engagement Addresses Human Needs
Early Indications Human-Centered Decision Aids Help People Make More Appropriate Care Decisions
When you’re faced with a medical decision, you need information. But data about treatment options, outcomes, benefits, harms, survival rates, and false positives are only part of the equation. Too often, we assume patients and families already understand their condition and the trajectory of their condition. And we’re human, so emotions also play a significant role.
Take low back pain. If you’ve had it, you know the pain can be significant and frightening. It feels serious. Add to this, people often get imaging studies and are told things like “you have degenerative disc disease”, which mostly means they’re aging. But that language can intensify any concerns; and even if they’ve been coping with back pain for years, they may think the pain is dangerous, and may actually avoid beneficial activities like walking and think they’re playing it safe by limiting movement and staying in bed.
On the other side of the spectrum, when men are told they have low-risk prostate cancer, the main word their brain hears is “cancer” and they can even experience cancer-related anxiety. Our brains don’t really process the low-risk part and hone in on the piece that sounds life threatening. It makes sense, we’re programmed for self-preservation. Unfortunately, this anxiety can move men or their families to opt for some pretty intense treatments, like prostatectomy surgery or radiation, over more modest approaches like active surveillance, because the latter doesn’t feel like enough is being done.
Now, emotions are not the enemy here. In fact, emotions are essential to making any decisions. Neurologist Antonio Damasio found that when the emotional part of the brain is damaged, people cannot make decisions because there’s a lack of “lift” from emotion that pushes us one way or the other. And emotions are integral to medical decisions that affect our quality of life as we weigh what matters to us. But making decisions when panicked or during the same hour we’re told a new diagnoses makes us more likely to under or over react and to over- or under-treat.
How do we address the human needs at the center of these decisions?
A human-centered approach means involving people who have been and are going through these experiences to get their perspective. This ensures tools like decision aids truly answer their questions and meet their needs. To do this, we talk with patients who have made decisions, who can see it from the other side and tell us what they wish they’d known or had considered. We also talk with people who are approaching these decisions, and observe patients and families.
For example, writer/producers at Emmi have shadowed home hospice, gone on ride-alongs in the Chicago asthma van, sat in on pain consults, patient classes and Q&A sessions for kidney disease, and observed procedures like knee arthroscopies, hysterectomies and even an amputation. Understanding the reality of what patients go through helps us paint a picture of what they’ll experience before, during and after a procedure, or help them get a sense for the lived experience after something like a mastectomy.
In our decision aid about chronic low back pain, we start by talking about how their pain may be worst when they first wake up. And how it may affect what they can do with their friends and family, and even contribute to depression. These moments of empathy also build trust; people see that you know what they’re really going through – that physical pain is never just physical. We also walk people through the anatomy of their back — how strong and resilient the back is, and how bulging discs are actually fairly common and not usually dangerous even though back pain can feel frightening. When we take time to do this instead of jumping straight into the treatment options, the patients’ comments are revealing:
“I liked learning the anatomy and knowing that most of the things we have heard of being problems and causing pain are not really causes or much of a concern.”
“Very reassuring that most back pain is not serious and that bed rest is the wrong thing to do.”
“I feel encouraged I might be able to use exercise to help my situation and avoid surgery.”
In fact, after viewing the Emmi decision aids, 36%-42% of people viewing back, hip, knee pain or prostate cancer reported a change of mind and now lean away from aggressive treatment, like surgery. (See full abstract on JMIR: http://www.iproc.org/2016/1/e2/). Many people also reported less anxiety and felt they would now be able to have better shared decision making conversations with their physicians.
Changing the conversation
With these insights from real people, we can also move beyond asking patients broad questions like: as you think about treatment options for breast cancer, or uterine fibroids, or hip pain: What are your values and preferences? This often stymies people. How can they think about a possible future they’ve never experienced? What should they consider?
Instead, we can help women “try on” decisions about a choice like breast reconstruction by thinking about how they’d feel putting on a favorite dress, a bathing suit, or changing in a locker room. It helps us ask individuals considering treatment for ESRD about how they think about quality of life vs. length of life, or what’s shaping their decision: least change to their lifestyle, a less strict meal plan, or getting a break from treatment some days.
For patients, this candid and compassionate approach can create a more meaningful conversation with their family and physicians. It gives people time and a space to process not just the information, but their emotions. As one breast cancer patient explained, “I loved hearing a voice explain the material instead of me reading it. The voice was more reassuring and calm than when I tried to read through booklets.”
For physicians, it can improve conversations and engage patients. Dr. Corey Siegel, prescribes the Crohn’s and Ulcerative Colitis decision aids to his patients at the IBD Center he directs at Dartmouth-Hitchock. In his experience: “Patients absolutely feel more involved as informed decision makers. They get it more. They understand the stakes and are more comfortable being involved in decisions since they have a better grasp of the issues. People are also more comfortable asking me questions.”
For more information about how Emmi designs our decision and other engagement aids, watch our webinar on shared decision making aids and the clinical encounter with Dr. Angie Fagerlin, Chair of Population Health Sciences and the University of Utah and President of Society for Medical Decision Making.