Shared Decision Making in Behavioral Health
Recovery to Practice Newsletter, Issue 2 April 2015; Elizabeth Whitney, M.S.W., L.I.C.S.W, Senior Program Manager, Advocates for Human Potential and Laurie Curtis, M.A., C.P.R.P., Senior Program Manager, Advocates for Human Potential
SARAH: Doctor, I am not happy with my medication. I feel sleepy all the time, and I need to be alert when my children are home.
DOCTOR 1: Have you tried going to bed earlier at night so you get more sleep?
DOCTOR 2: Fatigue is a common side effect of your medication, but it’s working well for you. We could try lowering the dose a little, but I don’t think that’s a good idea given your history.
DOCTOR 3: Being a good mom to your children is very important to you. Any medication you use should help you be a good mom, not get in the way. Let’s see what our options are.
Which doctor’s response is most likely to start a meaningful conversation with Sarah about her medication concern? If you answered Doctor 3, you are right. Yet, many persons served regularly encounter Doctors 1 and 2.
Shared decision making (SDM) occurs when persons served and their providers make healthcare decisions together, taking into account the best scientific evidence available and the person served’ s values and preferences. Any decisions about Sarah’s medication must be made in light of what is most important to her—being a good mom—not just the medication’s effectiveness in managing symptoms. Sarah and her doctor must be equal partners in making these decisions. The doctor knows the pharmacology and common medication responses, and Sarah knows what is important to her and how the medication affects her life.
Providers are not always good at predicting what treatment or service options their clients want. Mulley, Trimble, and Elwyn (2012) argue that misdiagnosis of preferences is an epidemic that has a significant impact on healthcare quality, effectiveness, and cost.1 High-quality, shared decision making relies on three factors: engagement, information, and dialogue.
Engagement
Historically, engagement has meant connecting people diagnosed with behavioral health disorders with services; that is, “getting people into treatment.” But, engagement also involves supporting people in actively managing their own care. Many persons served find it difficult to assert themselves with their providers. They are not sure what questions to ask, how to ask them, or how to weigh information and evidence against their values or goals. Further, people often worry about being perceived as “difficult” or “non-compliant” if they voice concerns about recommended medical or behavioral health treatment. Evidence shows, however, that people who are engaged in learning and making decisions about their services and treatment are more likely to choose options that they feel good about, are less costly, and lead to positive outcomes.2
Engagement means helping persons served plan and prepare for meetings with providers, develop skills in asking questions and making decisions, and understand their right to be full partners in decisions about their treatment and services.
Information
Good decisions are based on good information. Both persons served and providers need transparent and objective information about available options, including the potential benefits and risks of those options. Objective information includes evidence from research about how options compare in terms of cost, side effects, effectiveness, and other variables. Persons served need this information to figure out which options might best fit their values and preferences. For example, a medication that significantly impacts sexual functioning may not be a good fit for individuals who highly value intimate relationships.
Decisions can be easy to make when overwhelming evidence demonstrates one option is better than another. But most behavioral health treatment decisions are not so clear-cut. Sometimes, more than one good option exist or the choice is among poor options. These scenarios can result in decisional uncertainty for both persons served and providers. Ethically, when no single “right” answer exists, person served’s preferences must guide decision making.
Decision support tools such as decision aids (DAs) are designed to provide structured information about a specific decision. For example, medical DAs are carefully constructed to provide research based information about a specific condition, its treatment options, the risks of each option, and offer opportunities for individuals to weigh the information against what is most important to them. Other decision support tools are provider-focused and help clinicians engage people during consultations. The majority of DAs presently available are for medical conditions, but decision support resources for behavioral health are beginning to emerge.
Dialogue
The heart of shared decision making is the conversation between an individual and his or her service provider. Open information sharing and collaborative dialogue are essential. Tools, decision aids, and other resources can help promote and facilitate meaningful dialogue. Instead of holding vested interest in a person’s ultimate care decision, clinicians need to focus on the process of helping individuals make fully informed and reasoned decisions. As we saw in Sarah’s situation earlier, how a provider responds can dramatically influence both the process and outcome of the discussion.
At times, we all rely on experts for answers or guidance. However, when it comes to our medical and behavioral health, most of us want to be full partners in making decisions about treatment and services. We value objective information about our options, including potential benefits and harms. We want to consider our options in light of our personal goals, concerns, and preferences. We expect to be heard, valued, and respected as part of the decision-making process.
As clinicians and service providers, we know we cannot be truly effective if we make decisions for others. We want people to have reliable information and engage with us collaboratively to make the best decisions possible. We also need up-to-date information and tools and support to engage in more meaningful decision-making conversations. We all want to be informed, engaged, and empowered.
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