Eye on Ethics: Understanding Behavioral Health Advance Directives
By Frederic G. Reamer, PhD
Social Work Today
Vol. 22 No. 4 P. 30

Several years ago, I consulted on an ethics case involving a social worker’s client who struggled with schizophrenia. The client once had a thriving career as a supervisor in the construction industry. Over a period of years, the client had been hospitalized in a psychiatric facility on three occasions and received outpatient counseling services in a community mental health center and in a clinical social worker’s independent practice.

Following his most recent hospitalization, the client told his social worker: “I’m not sure how much longer I can take this. Going in and out of the hospital and taking all the meds is getting to me. Some days I wish I could just end it all. The next time someone tells me I need to go to the hospital, I think I’ll refuse and just live or die with the consequences.”

Of course, upon hearing those words, the social worker conducted a thorough suicide risk assessment and explored in depth the client’s feelings of despair. The social worker then reflected on the daunting question about the extent to which her vulnerable client has a right to refuse treatment.

The Right to Refuse
The concept of “right to refuse treatment” has a long and storied history, including several key court decisions. The 1977 Massachusetts case of Superintendent of Belchertown State School v. Saikewicz was pivotal. Joseph Saikewicz was a 67-year-old who had been diagnosed with profound intellectual disability (then known as mental retardation) and acute myeloblastic leukemia. His guardian ad litem sought to protect Saikewicz from the pain and discomfort associated with his treatment that could only postpone his death.

The Supreme Judicial Court of Massachusetts concluded that all people, both competent and incompetent, have a right to refuse medical treatment in appropriate circumstances. The court outlined a process whereby decisions should be made in accordance with what an incompetent person would want if he or she were competent. The court ultimately ruled that Saikewicz, if competent, would have refused treatment and could still do so despite his incompetence.

The 1981 case of Guardianship of Roe introduced what has become known as the concept of “substituted judgment.” Richard Roe III’s father (Roe’s guardian) consented to the administration of antipsychotic medications over Roe’s objection. The Supreme Judicial Court of Massachusetts called for a determination of substituted judgment that would consider the patient’s stated preferences, religious beliefs, impact on his family, probability of adverse side effects, likely results of refusing treatment, and prognosis with treatment.

Soon after this key judicial decision, the 1983 case of Rennie v. Klein addressed the issue of an involuntarily committed patient’s right to refuse treatment with antipsychotic medication. John Rennie, who had been hospitalized many times, filed a class action suit asserting his right to refuse antipsychotic medication. The US Court of Appeals for the Third Circuit ruled that involuntarily committed mentally ill patients have a constitutional right to refuse the administration of antipsychotic drugs and that this right can be overridden only after qualified professionals conclude there is evidence of dangerousness to the patient or others.

Two subsequent Supreme Court decisions also addressed key right-to-refuse issues. In Washington v. Harper, the court concluded that a state government may forcibly treat a prison inmate with a serious mental illness, provided that he or she is dangerous and that the treatment is in the individual’s medical interest. In Sell v. United States, a judge ordered a criminal court defendant’s hospitalization to determine whether he would attain the capacity to allow his trial to proceed. The judge also authorized forced administration of antipsychotic medication so that the defendant could stand trial. In a 6-3 opinion, the court held that the Constitution allows the federal government to administer antipsychotic drugs against a defendant’s wishes in limited circumstances. The court concluded that these conditions include whether the treatment is medically appropriate, is substantially unlikely to have side effects that may undermine the trial’s fairness, and, considering less-intrusive alternatives, is necessary to further governmental trial-related interests.

These and other appellate court decisions have sought to clarify whether and when people who struggle with psychiatric illness have a right to refuse treatment. Given the frequency with which social workers encounter vulnerable people who refuse services, the implications of these decisions are significant.

Behavioral Health Advance Directives
More recently, behavioral health professionals have used advance directives specifically tailored to mental health. A psychiatric or behavioral health advance directive (commonly referred to as a PAD) is a legal tool that allows people with mental illness to state their preferences for treatment in advance of a crisis. PADs, which emerged in the 1990s as a parallel to medical advance directives for end-of-life planning, are designed to help protect a person’s autonomy and ability to direct the care they receive.

Laws on PADs vary from state to state. In general, a PAD has two parts: an advance instruction and a health care power of attorney. The advance instruction can include treatment preferences and give advanced consent for hospital admission. Also, a PAD can identify preferred medications and treatment options.

The health care power of attorney can be used for psychiatric emergencies. It allows the person to appoint a trusted individual to serve as a health care agent with decision-making authority during times when a person is incapacitated. In principle, PADs can enhance the therapeutic relationship by helping people feel more connected to and aligned with behavioral health professionals. Furthermore, a PAD can provide a mechanism to involve family or significant others in the individual’s treatment without having to go through a consent process during a crisis.

PADs differ from medical advance directives, which first emerged in the 1960s, in important ways. Living wills or medical advance directives require thinking forward to a future state or set of circumstances that a person has never experienced. In contrast, a PAD is often based on an individual’s past treatment experiences. Although a PAD generally binds the individual to decisions made in advance, it can be overridden by involuntary treatment orders or other compelling emergencies. Even in these situations, the PAD can still be consulted to learn about the person’s treatment preferences.

The Relevance of Social Work Values
Social workers who serve vulnerable people who wish to use a PAD should always consider key social work values. The NASW Code of Ethics provides a valuable guide. Social workers who assist clients who wish to prepare a PAD should honor the code’s commitment to the “dignity and worth of the person,” as set forth in the principles section of the Code of Ethics. Furthermore, social workers’ efforts should “respect and promote the right of clients to self-determination and assist clients in their efforts to identify and clarify their goals” and “provide services to clients only in the context of a professional relationship based, when appropriate, on valid informed consent.”

If social workers encounter clients who are unable to make sound decisions about their care, they “should protect clients’ interests by seeking permission from an appropriate third party, informing clients consistent with the clients’ level of understanding. In such instances. social workers should seek to ensure that the third party acts in a manner consistent with clients’ wishes and interests. Social workers should take reasonable steps to enhance such clients’ ability to give informed consent.”

Social workers are accustomed to challenging circumstances that require balancing clients’ self-determination rights with the moral duty to protect clients and others from harm. As the NASW Code of Ethics says, “Social workers may limit clients’ right to self-determination when, in the social workers’ professional judgment, clients’ actions or potential actions pose a serious, foreseeable, and imminent risk to themselves or others.”

Threading this needle is not easy. Invariably it requires skilled consultation, sound judgment, and a deep commitment to social work’s core values.

— Frederic G. Reamer, PhD, is a professor in the graduate program of the School of Social Work at Rhode Island College. He is the author of many books and articles, and his research has addressed mental health, health care, criminal justice, and professional ethics.