"Despite Expressing a Desire for Life, He Rejected Medical Treatment"

In a hospital in New York City, a late 60s Black man named Mr. Young was admitted with advanced cancer and paranoid schizophrenia, both of which had gone untreated. A scan confirmed the terminal nature of his cancer.

Mr. Young's refusal of a CT scan was rooted in discomfort and distrust in the healthcare system, stemming from past involuntary psychiatric hospitalizations. This distrust is a common experience among marginalized patients, who often report low levels of trust and ongoing experiences of violation in the medical system.

Despite having a Medical Order for Life-Sustaining Treatment (MOLST) form, completed at his supportive housing facility, which requested resuscitation and life-sustaining treatment, the ethical review committee, after consulting clinical ethicists, unanimously agreed that it was appropriate for Mr. Young's code status to be changed to do-not-resuscitate (DNR) and he was discharged to a hospice facility. Forcing treatment over Mr. Young's objection was deemed likely to be traumatizing given his history.

The decision to bypass Mr. Young's MOLST raises ethical tensions regarding honoring documented directives and recognizing when patients may be engaging in shared decision-making. Black patients and individuals with schizophrenia often face bias from clinicians and have historically been subjected to coercive treatment.

The case invites critical 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 broader social determinants of health.

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. However, patients perceived as "difficult" might receive less consideration compared to more affable patients.

The risk of paternalism exists when overriding an explicit directive based on collateral information. New York State's alternative decision-making process for unrepresented patients grants significant discretion to clinicians and ethics committees, which risks inconsistent application across institutions.

Mr. Young had an unusually attentive care system, but many unrepresented patients do not have this level of advocacy and support. Unrepresented patients are historically undertreated and lack an advocate to ensure their preferences are considered.

The ethical considerations and decision-making processes for unrepresented patients with a MOLST in end-of-life care involve balancing respect for documented patient wishes with the complexities of interpreting ambiguous or conflicting preferences, especially when there is no surrogate decision-maker. Key issues include honoring autonomy, avoiding paternalism, and navigating contextual and relational factors that may affect the patient's expressed or implied preferences.

When a patient's MOLST is ambiguous or conflicting, clinicians and ethics consultants may engage in shared decision-making models that integrate the documented directives with indirect expressions of patient wishes and clinical judgment about the patient's best interests. This approach attempts to respect the patient's dignity and autonomy while also addressing suffering and quality of care considerations. However, overriding explicit directives based on collateral information risks paternalism and raises difficult ethical questions about whose voice is prioritized, particularly for unrepresented patients who may already be vulnerable to structural biases related to race, psychiatric history, or institutional context.

Ethical frameworks for these cases emphasize:

Interpreting MOLST forms not as rigid directives but as part of a broader decision-making dialogue that considers the patient's values and the clinical situation.
Recognizing the limitations of relying solely on documented orders when patients may express preferences indirectly or inconsistently.
Being vigilant about the potential influence of institutional bias, social determinants, and systemic inequities that may affect treatment decisions for unrepresented patients.
Incorporating multidisciplinary ethics consultations and shared decision-making practices when possible, to approximate patient-centered care despite the absence of a surrogate decision-maker.

In sum, the ethical approach requires careful contextual interpretation of MOLST, sensitivity to possible ambiguity or conflict in patient wishes, acknowledgment of structural vulnerabilities of unrepresented patients, and an effort to balance respect for autonomy with compassionate clinical judgment.

[1] Adapted from: "Ethical considerations in end-of-life care for unrepresented patients: A case study" by Xue, L., et al. (2020). Journal of General Internal Medicine, 35(1), 101-107.