Life's Beyond Survival: Rejects Hospital Treatment

================================================================

In a hospital in New York City, Mr. Young, a frail-looking Black man in his late 60s, was admitted with complications from untreated advanced cancer and paranoid schizophrenia. Mr. Young had a diagnosis of paranoid schizophrenia and lived in a supportive housing facility for people with psychiatric illnesses. His case highlights the complex ethical considerations that arise when treating unrepresented patients, those lacking decision-making capacity and without an available surrogate.

Historically, unrepresented patients are often historically undertreated and more vulnerable to systemic biases, including racial and psychiatric stigmatization, which contribute to mistrust and fear towards medical institutions. This vulnerability demands a heightened ethical vigilance to avoid defaulting to efficiency or risk-averse institutional norms that might override individualized care needs.

In the case of Mr. Young, his MOLST form was not just a medical directive but a safeguard for him, ensuring that he would not be dismissed or mistreated, and that his dignity would be recognized and respected. However, the decision to bypass Mr. Young's MOLST raises ethical tensions about honoring documented directives and interpreting those preferences in light of contextual and relational factors.

The ethical framework prioritizes advocacy and thorough ethical deliberation, recognising that unrepresented patients lack advocates. Ethics committees and clinicians must rigorously deliberate to discern the patient’s values and preferences, ideally by gathering collateral information from outpatient providers or any community supports.

The patient’s race, psychiatric history, and history of trauma, all potent factors shaping their medical mistrust, must be incorporated into care decisions to prevent perpetuating institutional bias. Treating such patients involves a comprehensive review of all available documentation, engagement of hospital ethics committees, gathering collateral information, applying trauma-informed care principles, ethical reflection on the proportionality and benefits of life-sustaining treatments, and consideration of sociocultural and identity factors.

Mr. Young's refusal to undergo a CT scan ordered by the primary care team to stage his cancer and develop a treatment plan was due to discomfort and distrust in the healthcare system, stemming from his history of involuntary psychiatric hospitalizations. The primary care team consulted clinical ethicists to assist in navigating decisions about Mr. Young's care, as he lacked capacity to refuse the workup and was classified as an unrepresented patient.

The ethics review committee unanimously agreed that it was appropriate for the primary care team to change Mr. Young's code status to do-not-resuscitate. Mr. Young was discharged from the hospital to a hospice facility, where he could receive comfort-focused care in his final days.

The case invites examination of how race, psychiatric history, and institutional bias can shape the care trajectories of unrepresented individuals and whether clinical ethics processes adequately account for these broader social determinants of health. The legacy of these injustices continues to shape healthcare experiences, leading to low levels of trust and an ongoing experience of violation in the medical system.

The case underscores the need for ethics consultation services to address social determinants of health, even when a patient is nearing the end of life, and to treat them with respect. In New York State, hospice enrollment for unrepresented patients like Mr. Young requires a recommendation from the treating provider, agreement from a second practitioner not involved in his care, and review by an ethics review committee.

The ethics consultation service's role in addressing the discomfort of patients and clinical teams and exploring "mixed" messages as the clinical facts change and collateral information is gathered is highlighted. The case serves as a reminder of the importance of treating all patients with dignity, respect, and compassion, especially those who are most vulnerable.

[1] American Medical Association Council on Ethical and Judicial Affairs. Report 12-A-06. Ethical issues in the care of unrepresented patients. Available at: https://www.ama-assn.org/ama/pub/about-ama/our-people/ama-councils/ethics/reports/2012-a-06.pdf

[2] American Hospital Association. Ethical and legal issues in the care of unrepresented patients. Available at: https://www.hospitalimpact.org/content/ethical-and-legal-issues-care-unrepresented-patients

[3] Substance Abuse and Mental Health Services Administration. Trauma-informed care in behavioral health services. Available at: https://www.samhsa.gov/trauma-violence/trauma-informed-care

[4] National Academy of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Available at: https://nam.edu/wp-content/uploads/2018/02/crossing_the_quality_chasm.pdf