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Choice: The Secret Sauce of Patient Engagement?

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One of my doctors always asks if he can examine me before he starts. He identifies each body part he is going to touch as a question. I feel like I can always say, "No ear exam today, thank you." Or alternately, "I've been having a little pain in my left ear. Can you check it?"

Tiny point. Subtle. But by merely asking me, my doctor signals that I am not a passive recipient of his care but rather an active partner in a series of interactions over which I have some choices. It's odd that such a minor exchange can have such a potent effect on my impression of my care, no?

The idea that it is time for patients to have a bigger role in determining aspects of our health care has gained considerable momentum over the past decade. The reorganization of care to be more patient-centered, access to patient portals in electronic health records and the use of shared decision-making tools that inject our needs and preferences into treatment decisions are some of the institutional fixes that aim to support our autonomy while simultaneously requiring us to take on more responsibility for our care.

Recent studies in the Journal of Personality and Social Psychology acknowledge the link between personal control and health outcomes, and identify inconvenient layers of complexity:

  • Individuals differ considerably in their preference for making choices about their health care.
    • Individuals' penchant for choice can vary by situation: type/degree of illness, the complexity of the decision itself, or the setting (office or intensive care unit, for example) can influence people's interest in making decisions about their care.
    • In addition, some people have a general predilection for more personal control and prefer to make choices about different aspects of their care.
  • Those who prefer to make a specific choice about their care benefit significantly more than those who prefer not to be involved but who nevertheless must choose. The benefit experienced by those who prefer to make decisions is over and above that conferred by the treatment or test (or the choice of none).

The implications of these findings are both practical and expansive.

In an abundance of enthusiasm for ensuring that we are, in fact, actively determining the course of our care, some clinicians are asking their patients to make choices about tests or treatments. Sometimes this happens when formal programs are in place to support shared decision-making for preference-sensitive conditions such as PSA testing or back pain. In others, clinicians informally – and somewhat haphazardly – delegate decisions to patients: "Yes, I can prescribe a chest X-ray if you are really worried about pneumonia," or "You decide which migraine drug you want to take."

Regardless, the data from these studies suggest that when faced with the opportunity to choose, we should always have a clear option to defer decisions about our care to our clinician or a family member. Those of us who are too ill to think clearly, are overwhelmed by the perceived complexity of a specific decision or who simply prefer not to choose should be able to rely on our clinicians to act on our behalf when we are unwilling or unable to do so.

Conversely, many clinicians still have scant enthusiasm for inviting patients to express their opinions and preferences about treatments, tests and care. The objections are familiar: it will take too much time; we may make the wrong choice; we don't know enough to make an informed decision. The use of shared decision-making protocols for preference-sensitive conditions encourages clinicians to test out sharing decisions with patients about a limited set of concerns in a safe, supervised manner.

But as a patient, I ask you: What aspects of my health care are not preference-sensitive? Even patients who have passed control to a trusted clinician or caregiver are eager to reclaim territory lost. Valuing autonomy and choice over the food we eat, the body part examined or the pills we take, most of us make unilateral (and often uninformed) choices about when and where to seek care and whether or how to make use of it once we receive our clinicians' directives. As a result, some of our behavior is labeled noncompliant and is viewed as expensive and wasteful.

The invitation – and option – to join with our clinicians in making decisions about all aspects of our care will not necessarily improve our adherence to medical directives. Rather, having the choice to work with our clinician to agree on a treatment plan that matches our preferences increases the probability we follow that plan and, in the process, reap additional benefits from participating to the extent that we are willing and able.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Patient Engagement   Make Good Treatment Decisions   Participate in your Treatment  


Comments on this post
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Shoshanna Sofaer says
October 17, 2013 at 1:48 AM

Choice is so important to Americans. It feels to us, I think, that having choice means being free, or at least more free. Decades ago I did a small study on older people's decision-making preferences and experiences. We asked people about seven kinds of health decisions, and asked whether they wanted to make the decision all by themselves, make it themselves with input from others, have someone else make it with input from them, or just have someone else make it. The distribution was incredible -- lot of community dwelling elder in each cell, across decisions. We also looked for difference between what people said they experienced and what they wanted to experience. Only 10% reported a difference there. But here's the kicker -- half of them said they wanted more involvement from others, half said they wanted to do more on their own. My conclusion, patient autonomy means being able to choose when, where and how you want to make your own decisions or have someone you designate make them for you. Curiously free-ing, don't you think?

Carolyn Thomas says
October 18, 2013 at 11:50 AM

Thanks Jessie for this important perspective on choice. There's a tendency within the ePatient movement to assume that other patients are or should be "like us", whatever that means. But even the most engaged and empowered (adjectives that I'm finding increasingly tiresome!) patients can find themselves as you describe: "too ill to think clearly, are overwhelmed by the perceived complexity of a specific decision, or simply prefer not to choose." And some of us can swing our preferences from day to day - or from hour to hour - depending on how ill we feel.

During one of my heart health presentations, a man in the audience rose to tell a story of a distressing interaction with his cardiologist in which the doc had repeatedly solicited the man's input on upcoming treatment options. The man finally said to his cardiologist: "Why are you asking me? YOU'RE the doctor! YOU'RE the expert!"

But even a patient like this, quite happy to have his doctors make the Big Decisions, may delight in other health care choices - like your charming opening story of identifying each body part your doctor's about to touch "as a question".

BTW, Shoshanna: choice is not a uniquely American issue - it's just as important for us non-Americans.


Nathalie Majorek says
October 18, 2013 at 3:29 PM

Jessie, as a physician and ardent advocate for patient engagement, I applaud your unique perspective. What is important to recognize is that our role as physicians has changed. Instead of just telling someone what their treatment will be, it is important for us to assume the role of advisor and educator., to involve the patient in the decision making and the treatment process. In a world of easy access to information, patients still look to their physicians for the "answer" but it is our responsibility as physicians to advise our patients and have them be active participants in the decision making process

Karbear says
October 23, 2013 at 10:14 PM

It's kinda like the over reaching government that think they know and can make better decisions for your life then you can. Hmm.