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“No education about me without me”: A shared decision-making approach to patient education

Fahlberg, Beth PhD, RN

doi: 10.1097/01.NURSE.0000459549.75744.3a
Department: TRANSITIONS: Issues in palliative and end-of-life care

A shared decision-making approach to patient education

Beth Fahlberg is a clinical associate professor at the University of Wisconsin-Madison School of Nursing.

“HARVEY,” 75, IS A RETIRED accountant with Stage D (advanced) heart failure. He's been hospitalized five times for heart failure during the past year and was just discharged 2 weeks ago after being treated for a 20-lb (9.1 kg) weight gain and shortness of breath. Now he's being readmitted for his heart failure. Susan, the nurse who'd discharged him, voices her frustration. “I can't believe he's back! I spent so much time educating him about his diet and sodium consumption the last time he was here. I even gave him a heart failure education binder, but he won't stick to the treatment plan. I just don't know what to do!”

Sound familiar? Many nurses feel frustrated and discouraged when patients are readmitted for chronic health problems that they “should” be managing better at home. For insights into why patients don't always adhere to seemingly simple treatment recommendations, let's look at this scenario from Harvey's perspective.

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Harvey speaks up

“The nurse talked to me for a long time and gave me a binder of stuff that I added to the collection of binders that I already have at home. The problem is, I can't do any of the things she told me to do. I live on my own and can't get to the store or cook because it's so much work for me to just get out of bed. I can't even get dressed anymore because it tires me out for the rest of the day. I have to save my energy for things like getting myself to the bathroom and going to doctor appointments. So, I heat up canned and frozen foods to eat because that's what I can do.

“The nurse told me to avoid sodium by eating fresh foods and cooking for myself, with nothing from cans, but that doesn't work for me. I haven't been able to go grocery shopping for three years. My neighbor gets me things I can heat up in the microwave, food that won't go bad between shopping trips. At this point, even heating up a can of soup and eating it wears me out. It's almost not worth eating anymore, because I don't get hungry and everything I eat makes me retain fluid. Then I end up back here in the hospital where the nurses scold me like a child. I can never measure up to their expectations.

“I learned a long time ago that nurses like to tell you what to do, so I just let them talk. I don't want to make them mad because I need their help, and I understand that it's their job to tell me all this stuff before I can go home.”

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Where good teaching goes wrong

Harvey's comments highlight several barriers to effective patient education. As nurses, we often feel that it's our responsibility to educate our patients so that they'll follow our instructions, which helps ensure better health outcomes for them. But this perspective doesn't take into account these key concepts.

  • The patient, not the nurse, is the expert about his or her life. A top-down, prepackaged approach to education, based on a standardized teaching plan, doesn't acknowledge the patient's expertise about his or her body, health, resources, beliefs, and values.
  • A patient's “failure to adhere” to treatment isn't the nurse's failure. After the nurse educates the patient, the nurse isn't responsible for the patient's behavior. The patient is an independent adult who's in control of his or her own life. The patient is ultimately responsible for his or her decisions and will have to deal with the consequences. (See What's wrong with “compliance” or “adherence”?)
  • Patient education is an ongoing process, not a single event. Following a standardized “patient education plan,” nurses have a tendency to start from square one with a one-size-fits-all approach. However, patients with advanced chronic illnesses, such as Harvey, have usually been managing their health problems for years. Patient education should acknowledge what patients already know and what works for them. Nurses need to work with patients to find the gaps that contributed to the current problem, then continue to work with patients and significant others to find a realistic management plan that fills the gaps. Nurses can then evaluate the outcomes of the plan and revise it as time goes on.
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Simplicity vs. complexity

It can be very challenging to teach patients who have advanced chronic illness because they often have numerous functional and cognitive limitations and a complex medical regimen. They may be struggling just to do the tasks that are absolutely necessary, such as getting to the bathroom and eating. In our zeal to “fix” their immediate problems through education, we may inadvertently add to an already complex and heavy load.

We see this with Harvey, who's even eliminated getting dressed because it's not essential to his survival. Rather than adding to his burden, the nurse needs to focus on simplicity: What can the nurse recommend that will make the biggest difference in his life?

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Adopt a new mantra for patient education

I think we need to move toward shared decision making, a partnership approach to patient education about healthcare. It can be summed up in this phrase: no decision about me, without me. When we think of patient education as a partnership, no education about me, without me becomes the mantra for teaching patients and families.

A key element of shared decision making is the idea that patients rely on our expertise. While patients are the experts about their bodies and their lives, we as nurses have a better understanding of evidence-based practice and interventions that are most likely to be effective in treating various health problems. Both types of expertise are needed in designing an effective plan.

Taking a shared decision-making approach to individualized patient education, Harvey's nurse Susan sits down with Harvey. This time, her goal is to assess his situation better and to partner with him to design a plan that will help him avoid readmission. Let's listen to their conversation.

Susan: “So Harvey, I'm sorry to see you back here in the hospital. I know this isn't where you want to be, yet you keep having problems with fluid retention. What do you think is contributing to this problem?”

Harvey: “Well, I know it's all the salt in what I eat, but I don't know what I can do about it. I can't cook for myself because it's so much work, and even though I know about food labels, I have to rely on my neighbor Walt to do all my shopping.”

Susan: “Do you have any ideas about how we might help you and Walt ensure that the foods you have to eat will be healthier for you, yet still easy for you to prepare?”

Harvey: “I guess maybe someone could help him learn how to read food labels for the amount of sodium and what that means. We could also make a list of foods at the grocery store that I like and can eat, that he can use when shops for me.”

Susan: “That sounds like a great idea. Let's set up an appointment with a dietician for the two of you when you go see the doctor after discharge. In the meantime, when Walt comes to pick you up later today, I'll go over some information with both of you about the low sodium diet, so he understands why this is important, and I can give you a list of foods that are both healthy and easy.”

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The payoff: A better outcome

Months later, walking through the hospital clinic area, Susan sees Harvey and they stop to chat. Harvey reports that he's been feeling a lot better and has managed to stay out of the hospital for months. “I think it's because I'm finally able to get foods that don't cause the fluid to build up in me. Walt has been doing a great job shopping for me now that he knows what to buy. He even cooks me some special low-sodium home-made dinners when I get a craving for something he can't find. Thanks for helping make my life so much better.”

More information on shared decision making can be found through the Informed Medical Decisions Foundation:

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What's wrong with “compliance” or “adherence”?

When our educational goal is “compliance,” our patients “have a passive role in any episode of care that is characterized by the need to act ‘sensibly’ by following the directions of the practitioner, even if this comes at a cost to their own beliefs and value.”1 In this model of patient education, the nurse is in control of the plan and “any attempt by patients to question or negotiate a plan of care (may) result in them being labelled as ‘foolish’ or ‘difficult.’”2

Even the idea of “adherence,” a term that's often preferred to “compliance,” can be problematic because it “requires patients to be informed before passively accepting and cooperating with care or treatment.”1 Instead of putting patients into a passive role, we need to facilitate self-management of their own health by encouraging them to take responsibility for the day-to-day decisions about how they live and care for themselves. With shared decision making, patients assume an active role in their own healthcare.

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1. McKinnon J. The case for concordance: value and application in nursing practice. Br J Nurs. 2013;22(13):766–771.
2. Russell S, Daly J, Hughes E, Hoog Co Co. Nurses and ‘difficult’ patients: negotiating non-compliance. J Adv Nurs. 2003;43(3):281–287.
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