Laying the groundwork
The doctor's role
Preparing caregivers and service providers
Competence and credibility
Power and coercion
Laying the groundwork. Introducing shared decision-making requires preparation and education of everyone involved: clinicians, patients and other treatment team members. Both doctors and patients need to understand how the process works, how it can help them and how to participate in it. They need to adjust to new roles and new expectations.
Time required. Shared decision-making requires time for discussing the patient’s concerns, exploring options and negotiating decisions. This may not fit into a single appointment, at least initially. However, as the video demonstrates, productive decisions can be made quickly once good two-way communication has been established. The video also demonstrates how a decision aid—the checklist that the patient filled out before the appointment—can help a patient organize their thoughts and quickly inform the doctor of concerns and goals. The promise of shared decision-making is that any extra time invested will result in better communication, more effective treatment and greater adherence.
The doctor’s role. A willingness to incorporate the patient’s goals and preferences into treatment decisions broadens the doctor’s role from medical expert to advisor and negotiator. It also requires a sharing of power. However, it does not diminish the doctor’s expertise and skill, or responsibilities. It facilitates one of those responsibilities, providing enough information about options, risks and benefits to make informed consent possible.
Shared decision-making makes room for the agendas of both provider and patient, which could be very different. For example, is the purpose of treatment to bring a mental health condition under control or to reduce those symptoms most troubling to the patient? Are doctors responsible for deciding what is medically “best” for the patient? Suppose the patient wants to try alternatives to medication? The patient may be concerned with the potential risks of treatment while the doctor may be concerned about the risks of uncontrolled behavior. If the patient prefers an option that seems medically naïve or unproven, what is the doctor’s responsibility?
While talking about such disagreements can be uncomfortable, shared decision-making creates an environment for negotiating mutual decisions.
See My doctor and I can’t agree for a step-by-step approach for working out differences.
How much do patients need to know about the possible risks and side effects of treatment? Is laying out a variety of options helpful or confusing? How much responsibility do patients want to shoulder? Does giving patients control set them up for disappointment?
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Preparing patients. For the patient, shared decision-making might look risky as well as attractive. Doctors have authority and may hold power over patients when their housing and services are contingent on adherence to treatment (see power and coercion, below). Clients in the public mental health system have learned that it is safest to go along and keep a low profile. Patients also may feel they are up against prejudice about their competence, credibility and worth because they are deemed mentally ill. Unless they are assured that the doctor is willing to share decision-making and tolerate differences of opinion, they may be reluctant to open up, discuss reservations or make independent choices.
Shared decision-making assumes that patients have autonomy and as consumers have the right to choose and decide. These distinctly American values may collide with a patient’s own cultural beliefs, for example, their respect for authority figures, reluctance to speak up, their understanding of mental health conditions or shame. Understanding the benefits of the process may help them overcome their reluctance.
Patients may need coaching and support to assume their assertive role in shared decision-making. They need to prepare for appointments by thinking about their likes and dislikes, preferences and values in relation to treatment, and to voice them. Peer specialists and recovery coaches can be used to teach their peers about the process and support them in using it. These peer providers are being increasingly used in public mental health agencies as well as peer-operated programs.
Shared decision-making places more responsibility on the patient than passively accepting a doctor’s decisions, because they are faced with treatment options that need to be understood and selected, they are exposed to information about potential risks as well as benefits and they share responsibility for decisions with the doctor. Some patients will not want to assume this responsibility.
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Preparing caregivers and mental health providers. Family members or other caregivers may fear that allowing a patient to actively participate in treatment decisions is risky. They may fear that the patient will take unnecessary risks, get sicker or lose control of their behavior. Case managers and other mental health service providers may have similar concerns. They need to understand that shared decision-making can lead to greater engagement, decisions that work better for the patient, and better adherence to treatment.
Competence. Are people with mental illness competent to take part in decision-making and make good decisions about their care, especially when they are very “ill” or “symptomatic?” The Institute of Medicine’s 2006 report on Improving the Quality of Care for Mental and Substance-Use Conditions challenged the presumption of incompetence:
“It is inappropriate to draw conclusions about individuals’ capacity for decision-making solely on the basis that they are mentally ill, or even whether they have a particular mental illness, such as schizophrenia. Many people with mental illness, indeed many with severe mental illnesses, are not incompetent on most measures of competency.” (page 98)
If a person appears to have diminished competence or rationality, do they lose their right or ability to decide? Shared decision-making assumes that individuals are competent and provides a mechanism for negotiating compromises when patient and doctor disagree. If patients are making decisions that place them at grave risk of harm to themselves or others, physicians can intervene to assure that safety is maintained. Competence, therefore, is assumed to be the rule until threshold behaviors endanger the patient or others.
The use of a psychiatric advance directive can enable a person to influence treatment decisions during times when a they have diminished competence or are determined to lack competence. Created when a person is well, a psychiatric advance directive documents their treatment preferences and specify treatments they do and don’t want. It also names a trusted person to act as a health care agent or surrogate. About half of states have legalized some form of psychiatric advance directive. Treatment providers are required to consider the preferences expressed and to consult with the health care agent when the patient is declared incompetent. See myplanmylife.com for more information.
Can a person who rejects a diagnosis or does not believe they have a mental illness engage in shared treatment decisions? Even when the patient and doctor have conflicting values or viewpoints, shared decision-making provides a way to negotiate compromise and agreement about what steps to take.
Credibility. Patients have another concern: that their credibility is questioned in medical treatment. They may feel they are not heard, respected or believed, once it is known that they have a psychiatric diagnosis. They find that legitimate concerns they report are interpreted are artifacts of their illness and dismissed. This can include reports of adverse experiences with medications and side-effects.
Power and coercion. Shared decision-making is a partnership between provider and patient. Can it work well when one partner has power over the other? The patient may feel unequal to the doctor in terms of expertise, education, social status and income. Also, the patient may depend on the doctor’s cooperation when they receive services that are contingent on their psychiatric treatment. For example, one may be in a housing program that requires compliance with treatment, and another may fear losing custody of her child.
Is it possible to truly share decision-making when coercion is present? For example, some people are under orders for involuntary outpatient commitment, while others are involved with mental health courts that require treatment. Patients in psychiatric hospitals face degrees of coercion. Take-downs, restraints and seclusion may be practiced. Some patients may be involuntarily committed by a court or magistrate, or sentenced to treatment in a criminal trial.
Even in circumstances where coercion is a factor, shared decision-making can be helpful to doctor and patient, improving communication and trust, making the patient feel heard and respected and empowering them to take part in decisions. Successful application of these techniques can ultimately reduce the need for and or the perception of coercion, thereby increasing engagement and trust.