Systematic review maps ethical barriers to end-of-life care for psychiatrically incapacitated patients

Patients with serious mental illness who lose the capacity to make their own medical decisions face substantial ethical and procedural barriers to receiving palliative and end-of-life care aligned with their goals, according to a systematic review published in BMC Palliative Care. The review, led by Gregg Robbins-Welty and Krista L Haines with a large multidisciplinary team, synthesizes how the United States literature frames three overlapping pathways that shape access to such care: end-of-life care in the context of terminal medical illness, the contested construct of terminal psychiatric illness, and capacity assessment as a procedural gateway to treatment refusal, surrogate decision-making, and de-escalation of life-prolonging care.

The researchers conducted a mixed-method systematic review following PRISMA 2020 guidance, searching MEDLINE, Embase, APA PsycINFO, and CINAHL Complete for English-language, U.S.-based records addressing serious mental illness, decisional incapacity, and access to palliative or end-of-life care. Records focused primarily on physician-assisted death or euthanasia, non-U.S. settings, or non-English-language publications were excluded. Two reviewers independently screened records at the title/abstract and full-text levels, with adjudication of conflicts, and summative content analysis was used to code ethical concepts and decision-making factors. The authors note that no formal risk-of-bias assessment was performed, because the review deliberately synthesized heterogeneous empirical and nonempirical records, including commentaries, legal analyses, policy statements, and narrative reports.

Of 3,253 records identified, 154 were eligible for inclusion. Most records framed end-of-life eligibility for psychiatrically incapacitated patients in relation to terminal medical illness, meaning that access to hospice or palliative pathways depended most consistently on a coexisting physical condition being recognized as terminal. Capacity assessment emerged as a frequent gatekeeping step for treatment limitation or hospice enrollment, but the literature itself highlighted problems with this gateway: thresholds for determining capacity varied, assessors could be subject to bias, and fluctuating psychopathology complicated judgments about whether a patient could reliably refuse or accept treatment.

The review also examined the contested idea of terminal psychiatric illness, a concept that lacked actionable consensus. Most records did not define criteria for when a psychiatric condition itself could be considered terminal, and the minority that did invoked heterogeneous determinants, with no shared operational standard. This inconsistency matters in practice, the authors conclude, because without agreed criteria it is difficult to establish when continued life-prolonging psychiatric treatment might be nonbeneficial.

Psychiatric advance directives, legal instruments intended to record a patient’s treatment preferences in advance of incapacity, were variably endorsed across the literature but were commonly described as difficult to implement and of uncertain applicability to medical end-of-life decisions. The review found that access to goal-concordant end-of-life care was most consistently enabled when a terminal medical illness was recognized and when surrogate decision-making pathways were already established, underscoring the practical importance of surrogate authority for this population.

The authors are careful to frame the limitations of their evidence base. Because the included literature is conceptually and methodologically heterogeneous, the reported frequencies should be interpreted as indicators of concepts appearing in the literature rather than as measures of clinical prevalence, consensus strength, or normative validity. The review describes how the U.S. literature frames these issues; it does not measure how often incapacitated patients actually receive or are denied end-of-life care in clinical settings.

Despite these limitations, the review identifies clear priorities for future work. Clarifying standards for capacity assessment, defining the scope of surrogate authority, and establishing criteria for when psychiatric treatment may be nonbeneficial remain outstanding tasks if patients with serious mental illness and decisional incapacity are to gain equitable access to palliative and end-of-life care. The article was published open access on 27 October 2026 and is citable under a permanent DOI, with the published version noted as subject to further editorial edits pending the final Version of Record.

Subject of Research: Ethical and procedural pathways to palliative and end-of-life care for U.S. patients with serious mental illness and decisional incapacity

Article Title: Ethical and procedural pathways to end-of-life care for patients with serious mental illness and decisional incapacity: a systematic review

Article References: Robbins-Welty, G., Scheiner, N., Taylor, E. P., Thomas, R., Shin, G. J., Swain, S., Hockran, S., Nakatani, M., Avila, S., Grisel, B., Wride, M., Driscoll, A., Corbin, L., Spaulding, S. L., Brown, M., Patel, K., Cantrell, S., Schwartz, A. C., & Haines, K. L. (2026). Ethical and procedural pathways to end-of-life care for patients with serious mental illness and decisional incapacity: a systematic review. BMC Palliative Care. https://doi.org/10.1186/s12904-026-02371-y

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DOI: 10.1186/s12904-026-02371-y

Keywords: palliative care, end-of-life care, serious mental illness, decisional capacity, surrogate decision-making, psychiatric advance directives, terminal psychiatric illness, systematic review, hospice eligibility, medical ethics, capacity assessment, BMC Palliative Care