Over fifty years ago, Luis Kutner, the progenitor of medical advance care planning, introduced a then radical idea: that patients should have a voice in their care, while healthcare providers should be protected from accusations, liability, or wrongdoing. Today, advance care planning is foundational to the architecture of healthcare delivery. Yet, the use of Psychiatric Advance Directives (PADs) has not experienced the same social or legal kinesis.
Despite their potential to uphold autonomy and safeguard dignity, PADs remain underutilized and underrecognized. At a time when our nation faces both a deepening mental health crisis and stark healthcare disparities, PADs must be elevated as a practical mechanism for self-determination as well as a tool to build restorative, trust-based relationships. The latter is particularly important for minoritized populations who have been historically excluded from meaningful participation in their own care. PADs affirm that psychiatric patients are not passive recipients of treatment, but active agents in shaping their futures.
In my years as a Clinical Social Worker, I have worked with many patients with mental illness. One case made a lasting impression because of the multilayered ethical tensions. To respect anonymity, this individual will be named Miles. He was a 23-year-old Black male living with both Bipolar Disorder and Sickle Cell Anemia-two conditions that shaped nearly every aspect of his life. From an early age, his childhood was interrupted by hospital stays and medical appointments. Vaso-occlusive episodes (VOEs), also known as acute pain crises, kept him from attending school consistently or participating in extracurricular activities. His life was structured not around milestones, but around moments of medical survival.
At age 16, Miles was diagnosed with Bipolar Disorder following a hypomanic episode. But his engagement with psychiatric care was sporadic and complicated by the demands of managing a chronic, painful physical illness. His inconsistent adherence eventually led to enrollment in Assisted Outpatient Treatment (AOT), a court-mandated program designed to ensure compliance with mental health care.
By age 22, Miles’s sickle cell disease had progressed. He made the deliberate decision to complete his medical advance directives, including Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders. At the same time, he became increasingly resistant to psychiatric treatment. When I asked about his choices, Miles posed a haunting question:
“Why don’t I have a choice in my psych care, but I can choose if I live or die?”
My experience with Miles is not merely a clinical encounter. It is a call to reimagine how we provide care for individuals living at the intersection of chronic medical conditions, severe mental illness, and racial-social marginalization. Historically, this patient population has endured paternalistic and unjust mental health treatment, often leading to disengagement driven by healthcare distrust and a profound sense of powerlessness. While patient-centered care models have gained traction in recent years, they frequently fail to acknowledge historical harms in their missions, program designs, or implementation strategies. To truly empower individuals with multiple marginalized identities, particularly in psychiatric settings, psychiatric advance directives (PADs) must be recognized not only as instruments of autonomy but also as a tool to restore power within the therapeutic relationship, just as it is in the medical practices outside of psychiatry.
According to a recent report by RAND Health Care, while all U.S. states have laws governing advance care planning, only 25 states have psychiatric-specific statutes that explicitly address mental health. This gap suggests that in the remaining 25 states, patients’ preferences and concerns, particularly those rooted in distrust of the healthcare system, are less likely to be acknowledged or honored. One can reasonably infer that the absence of PADs in these states may contribute to higher rates of disengagement from mental health services, especially among minoritized communities who have historically faced systemic neglect and coercion in psychiatric care. Just as in Miles’ case, his disengagement led him to a court order with an increased likelihood of further justice system involvement because of his mental illness.
Supporting the implementation of PADs offers not only a mechanism for autonomy but also a strategic tool to destigmatize mental illness within healthcare systems. As Public Health Scholar Uzoma notes, stigma manifests not only among those seeking care but also within the ranks of mental health providers themselves. Knaak and their colleagues expand this lens by identifying structural stigma embedded in unethical policies, unjust laws, and systemic resource imbalances—conditions that catalyzed the passage of the Mental Health Parity and Addiction Equity Act of 2008.
Enacting PADs across all 50 states would send a clear message: that mental health is not ancillary to medical care, and that individuals living with psychiatric conditions deserve both dignity and agency. It would affirm that their voices matter—not only in moments of crisis, but in the architecture of their care. Moreover, it would establish legal scaffolding and financial support to ensure PADs are accessible, actionable, and protected. I often wonder, if Miles had been given the chance to own his mental health journey, what might he have chosen? What truths would he have named, what boundaries would he have drawn, what healing might have been possible if the system had honored his voice and experiences?
In essence, the implementation of Psychiatric Advance Directives (PADs) centers the wishes of patients while serving as a restorative mechanism to engage socially disenfranchised communities in mental health care. PADs are not merely administrative tools; they are instruments of dignity, autonomy, and relational repair. As bioethicists, we carry a responsibility to elevate the urgent need for legally recognized PADs in every state. Their widespread adoption would uphold core ethical principles of self-determination and justice, while catalyzing a paradigm shift in how mental health resources are allocated, accessed, and understood within the broader healthcare system. Miles and countless others whose voices have been historically silenced would find PADs not just protection, but the possibility of flourishing. A chance to shape their care, reclaim their agency, and be seen as full participants in their healing.
Kara Simpson, LCSW-R, MSc (@iamkarasimpson) is the Director of Social Work at NYC Health + Hospitals/Woodhull.