"Mom," my almost 17-year old daughter Sophie said as she licked peanut butter off her finger, “if that ever happens to me again, I want you and dad to make sure I get the help I need.”
“That” was a psychotic break during which Sophie, convinced that she was in love with a pervert she’d met on the Internet, had planned to run away with him. But my husband Josh and I had intercepted their plan, so instead she’d spent the better part of two weeks in the psychiatric hospital where she was diagnosed with bipolar disorder and medicated.
“Of course, Sophie. Dad and I will always do everything we can to help you.”
Now, five years later, I wish I could turn the clock back and encourage Sophie to develop a psychiatric advance directive (PAD). But I didn’t know about PADs then.
Shortly after Sophie’s 18th birthday, despite the consistent opinions of two psychiatrists, a clinical social worker, and a therapist that she was not competent to make decisions about her medical care, she terminated her therapeutic relationships and refused to take her prescribed medications. Because Sophie had reached the age of legal adulthood, Josh and I had no right to discuss her treatment with health care providers and no right to make her adhere to treatment. An attorney specializing in mental health law suggested that guardianship procedures were a possibility, but cautioned that they were expensive, adversarial, and temporary.
Sophie’s refusal to cooperate with her prescribed treatment regimen combined with her wanton disregard for any limits we might set forced Josh and me to make a decision no parent should ever have to face. We could provide shelter, security, and support to Sophie while she escalated out of control—putting our home, our son, and ourselves at risk because of the frightful decisions she made—or we could protect ourselves by insisting that, if she did not cooperate with her treatment plan, she leave home.
Sophie left. She became addicted to methamphetamines and lives on the street when she’s not in jail. Was this really the life Sophie wanted?
Some research suggests that it is particularly important to discuss advance directives upon diagnosis of schizophrenia and bipolar disorder because of evidence showing that each psychotic exacerbation among patients with schizophrenia and each mood episode among patients with bipolar disorder leads to subtle brain damage. Magnetic resonance imaging shows development of periventricular white matter opacities and neurocognitive testing reveals cognitive deficits in executive and psychosocial functioning. Frontal lobe deficits have been found to persist even in states of relative stability among patients with schizophrenia and bipolar disorder 1
A PAD may have enabled Sophie to live a different life.
PADs are legal documents established when an individual is competent and put into effect during periods of decisional incapacity. They represent an alternative to the coercive interventions that can accompany mental health crises, enabling people with mental illness to maintain autonomy and self-determination.2
PADs allow people with mental illness to develop advance directives (AD) about treatment and to identify a healthcare power of attorney (HCPA). An AD enables an individual to stipulate which treatments and medications they would accept and which they would refuse. They can identify hospitals they would prefer and those to be avoided. A HCPA lets individuals appoint a representative to make treatment decisions on their behalf when they are unable to do so. It is assumed that health care proxies understand the treatment preferences of the person with mental illness and would make decisions using the principle of substituted judgment (making decisions consistent with those desired by the patient) during times of crisis.
Like the medical advance directives on which PADs are based, PADs are not problem-free. Issues include:
- PADs are grounded in the assumption that individuals with mental illness, when competent, can identify treatments that are most helpful to them and that they know what they need. Because both competence and decisions can fluctuate, there is concern about which decision is the one that must be respected. Moreover, some ethicists claim that future-oriented instructions are a poor substitute for the current choices of a competent individual. One opportunity for establishing PADs is when a person is discharged from the hospital; another may be coordinated with physician visits or therapy sessions. Ideally a PAD should be treated as an evolving process, rather than as an event.
- Despite the fact that all states allow advance directives for mental health in their health care decision laws, they are rarely developed. Persons with mental illness often lack the knowledge and/or resources needed to establish a PAD. Many are unable to identify someone to serve as proxy decision maker. Clinicians, concerned that PADs may be in conflict with standard practices of care, thereby presenting an ethical dilemma for them, may not encourage their patients to develop PADs.
- Even when PADs exist, they are often not implemented because crisis service providers don’t know about them. To be effective, PADs need to be easily accessible. Living will registries, medical-alert bracelets, and state registries have been suggested as strategies for ensuring that PADs are known to crisis providers, yet to date most PADs remain unknown to those providing care during crisis.
Despite these flaws, PADs are consistent with the available science on origins and treatment of serious mental illness. Because many people with severe mental illnesses have periods when they are competent to participate in decisions about treatment, PADs are ideal for ensuring that personal autonomy is respected when crises compromise decision-making abilities. The National Resource Center on Psychiatric Advance Directives and the Bazelon Center for Mental Health Law provide excellent resources for developing advance directives.
For PADs to be effective, however, health care providers must understand and support them, and crisis service providers must have easy access to them.
Was it really Sophie’s wish that her father and I make decisions for her?
How I wish I’d known about PADs and encouraged Sophie to legally establish her peanut butter infused advance directive before it was too late.
- Varma, A. (2005). Advance directives for persons with serious mental illness. Psychiatric Services, 56 (7), 874-875.
- Van Dorn, R.A., Scheyett, A., Swanson, J.W., & Swartz, M.S. (2010). Psychiatric advance directives and social workers: An integrative review. Social Work, 55 (2), 157-167.