Bioethics Forum Essay

We Need a Family Bill of Rights for Mental Healthcare

The New York Times recently published a mother’s story about her son with schizophrenia and how, once he turned 18, privacy protections and other legal limits left her unable to ensure that he received proper care. A system designed to protect her son’s right to refuse treatment left him to cycle through hospitalizations and live on New York City’s winter streets.

Her story is not uncommon. Across the country, families plead with medical professionals and courts for intervention when loved ones with serious mental illness refuse psychiatric treatment, often because the illness itself undermines the insight and judgment of these individuals. Serious mental illness afflicts approximately 6% of Americans. Among people experiencing homelessness, estimates suggest that 19% have major depressive disorder, 8% have bipolar disorder, and 7% have schizophrenia — three serious mental illnesses. Yet American mental health law affords families minimal formal recourse to share their concerns or experiences with doctors and judges.

American law strongly favors the autonomy of competent individuals over family interests. Legal protections for individual autonomy are a response to an era only two generations ago when states possessed broad authority to detain people with mental illness who were neither dangerous nor incapable of surviving safely on their own. Because of this dark legacy, protections against involuntary commitment and forced treatment remain essential. Unfortunately, the legal framework built to prevent abuse has, in many cases, created such high barriers that family members are unable to help relatives suffering from illnesses who are unable to recognize their own medical needs.  

Medical ethics has never viewed patient autonomy as absolute. As psychiatrist Darold A. Treffert lamented in a famous 1973 article, autonomy should not be upheld with such blind rigidity that patients are abandoned to “die with their rights on.” A system that privileges autonomy over other crucial ethical values such as beneficence and nonmaleficence and places family members in an adversarial role with their loved ones ultimately fails the very vulnerable individuals that it has been designed to protect. We propose an approach — a family bill of rights — that allows a limited but meaningful role for families in legal determinations for certain patients with severe mental illness to ensure that these patients are best served by both the medical and legal systems.

As a general principle, competent adults — whether or not they suffer from mental illness — should and do have a right to exclude family members from their affairs, including medical decision-making, for any reason. Nobody wants to return to the era  when, for example, a wife could be committed to a psychiatric hospital “by the request of the husband . . .  without the evidence of insanity required in other cases.” Nor should we return to a time when some families, seeking to conceal inconvenient relatives with schizophrenia, chose to abandon them indefinitely to grim public facilities like Alabama’s Bryce and Georgia’s Milledgeville.

Still, patient autonomy should have limits. All states allow clinicians to involuntarily hold psychiatric patients who pose a danger to themselves or others. But even in these circumstances, the law sidelines relatives like the mother in the New York Times essay. Patient autonomy is given priority even when the psychiatric illness itself compromises the person’s capacity to understand how their family’s input might result in better psychiatric treatment.

As their loved ones with serious mental illness cycle through hospitalization, most families are shocked to learn how little help they can offer. When a hospital involuntarily holds a patient for psychiatric stabilization, the hospital has no legal requirement to notify the next of kin. Hospitals must honor the wishes of a patient who does not want the family informed. If that hospital later seeks a hearing for longer commitment or treatment over the patient’s objection, as all states require, most state laws do not require family notification and they bar notification over the patient’s objection.

Even if family members are notified of a hearing about their loved one’s commitment or treatment plan, statutes do not give them the right to testify at the hearing about the individual’s condition and needs. What families know about a patient, therefore, often remains silenced: whether the patient has been able to adhere to treatment, whether the patient accepts any family support, and how frequently the patient has cycled in and out of hospitals before — all facts that (again, surprisingly) are not always known to the patient’s clinicians or to judges.

Ultimately, families have been shut out of the system to the detriment of patients’ health. Patients lose the benefit of information that their families could provide to clinicians and courts that could improve therapeutic decisions. Meanwhile, the system relies on families to provide housing, medical care, financial support, transportation, and crisis management. Families endure emotional and financial strain and may suffer serious adverse health outcomes themselves.

What is needed is a family bill of rights for the relatives of patients with serious mental illness. The federal Crime Victim’s Rights Act affords a loose model for the sorts of rights that families should have to participate in the mental health system. These three concepts are most essential:  

1. The Right to Be Aware. When physicians involuntary commit a patient for reasons of psychiatric necessity, statutes should require hospitals to notify the next of kin.  Exceptions to this requirement should prevent notification of family members with a history of domestic violence who could jeopardize the patient’s safety.

2. The Right to Be Present. Close relatives, including spouses, parents, siblings, and adult children, should be permitted to attend commitment and treatment-over-objection hearings, unless a court determines that their presence would create a specific risk of harm.

3. The Right to Be Heard. Relatives should have the right to share information with the courts in commitment and/or treatment hearings about the patient’s history, function outside of clinical care, adherence to prior treatment, and capacity to manage safely outside structured care. Such information would not change the standard for involuntarily detention or treatment, but it would allow courts and clinicians to make better decisions within those standards. Judges should also have broad leeway to withhold relatives’ statements from a patient when full disclosure might jeopardize family relationships and, thus, the patient’s well-being.

The advocacy organization, National Alliance on Mental Illness (NAMI), whose constituencies include the relatives of patients with mental illness, has spoken out vociferously for years about the ripple effect of serious mental illness on families that may last decades. It is time for our legal system to better balance autonomy with beneficence, answering the cry of relatives to be heard in decisions of the utmost importance to their family’s lives.

Jacob M. Appel, MD, is professor of psychiatry and medical education at the Icahn School of Medicine at Mount Sinai in New York, where he is director of ethics education in psychiatry, associate director of the Academy for Medicine and the Humanities, and medical director of the mental health clinic at the East Harlem Health Outreach Program.  

Lauren Hammer Breslow, JD, MPH, is an adjunct professor at the Elisabeth Haub School of Law at Pace University where she teaches bioethics and medical malpractice. Lauren Breslow | LinkedIn