Bioethics Forum Essay

Should An Unrepresented, Incapacitated Patient Be Treated Over Her Objection?

Ms. Lopez, 60, was involuntarily admitted to a psychiatric hospital after adult protective services found her living in “deplorable conditions” in her home. As a Spanish speaker, Ms. Lopez required an interpreter. She lacked the capacity to make decisions, and she had no known relatives or surrogate decision-makers. She was transferred to our hospital for treatment of nutritional deficiencies after refusing to eat for an extended period.

Ms. Lopez was initially diagnosed with a psychotic disorder with delusions. During her hospitalization, she frequently refused to speak or answer questions. She sometimes became agitated, shouting at hospital staff who attempted to communicate with her, walking away, or barricading herself in her room. On a few occasions, she required medical and physical restraint because of severe agitation and violent, aggressive, combative, and threatening behaviors. Ms. Lopez’s treatment team requested three clinical ethics consults during her eight-month hospitalization. The ethics consult that is the focus of this case study concerned treatment over Ms. Lopez’s objections and was prompted by an unexpected finding on an MRI: a brain mass suspicious for glioma, a fast-growing cancer. The psychiatric team considered it a possible cause of Ms. Lopez’s psychosis because her symptoms had not improved with medical treatment. The consulting neurologist disagreed, based on the location and small size of the lesion. He said that treating Ms. Lopez without her agreement would be “erroneous and inhumane.”

The treatment team asked for an ethics consult to evaluate whether diagnosis and treatment of the brain lesion should proceed over Ms. Lopez’s objections.

The Ethical Analysis and Process

 The clinical ethics team participated in an interdisciplinary team meeting to discuss Ms. Lopez’s case. The ethics team advised weighing the risks and benefits of diagnosing and treating Ms. Lopez over her objection, given the limited information about her brain lesion and prognosis. The team was particularly mindful of the uncertainty about whether treatment might restore her decisional capacity. The clinical ethicists emphasized that the bar for treating this patient over her objection was especially high given the substantial risks and onerous burdens of treatment (if her tumor was found to be cancerous), which would have included daily sedation, radiation, and chemotherapy. The prospect of restoring Ms. Lopez’s decisional capacity (and her autonomy) would provide a reason to treat her brain tumor despite her objections, as it would enable her to participate in future decisions about her medical treatment. However, the neurology and neuro-oncology doctors thought that was unlikely.

The Decision

In light of the determination of the neurology and neuro-oncology doctors, and, taking into consideration the burdens of treatment and uncertain benefits, the clinical ethics team advised against treatment that would be coercive and unwanted. The medical team then decided against treatment, obviating the need for further diagnostic testing. Six months into Ms. Lopez’s hospitalization, adult protective services was granted guardianship, and two months later she was discharged to a skilled nursing facility.

The incidental finding of the brain lesion was a game-changer for Ms. Lopez and her medical team. If Ms. Lopez had decisional capacity, her choice not to treat a brain tumor would have been accepted, particularly for one with a high risk of mortality like a glioma. Palliative and hospice care would have been reasonable alternatives to curative treatment. Because Ms. Lopez’s brain lesion was never fully diagnosed, whether or not her prognosis is in fact poor remains uncertain, rendering a thorough risk-benefit analysis impossible. In the end, questions concerning the cause of her psychosis also remain unresolved, but the anticipated burdens of coercive diagnosis and treatment appropriately tipped the balance against further exploration given the uncertain prospect of benefit.

Lingering Questions

At several decision points, there were significant legal constraints on the medical team. Foremost among them is that in our state (New York), patients who lack decisional capacity retain the right to object to surrogate decisions and treatment, at which point a court order must be obtained. In our view, these constraints appropriately protect vulnerable patients from unwanted, coercive treatment.

Persistent ethical questions recurred throughout Ms. Lopez’s hospitalization, specifically with respect to her rights and medical needs as a vulnerable, unrepresented patient without decisional capacity, and about balancing the significant burdens and risks of treatment over objection for a patient who denies illness and appears unlikely to recognize the benefits of treatment. One lingering question is whether, all things considered, we did enough for Ms. Lopez.

L. Syd M Johnson, PhD, is an associate professor at the Center for Bioethics and Humanities and a clinical ethics consultant at Upstate Medical University in Syracuse, N.Y. (@LSydMJohnson) 

Rachel E. Fabi, PhD, is an associate professor at the Center for Bioethics and Humanities and a clinical ethics consultant at Upstate Medical University. (@faBioethics)

Series Editors’ Comment: Overriding Persistent Refusals

While state laws and hospital policies often draw stark lines between having and lacking decision-making capacity, ethics consultation often operates in the space in between. Ms. Lopez clearly and consistently objects to medical interventions, but she also does not demonstrate that she understands the risks and benefits.

An ethical analysis of treating an incapacitated patient over their objection requires taking numerous factors into consideration, such as the patient’s known values and well-being interests, invasiveness and duration of the intervention, its likelihood to achieve health goals that seem to matter to the patient (at least given their other stated values), whether the patient’s stated objections are enduring or more fleeting, and whether restraints or sedation would be necessary. The ethical presumption is to respect the patient’s bodily sovereignty and stated values and to build the therapeutic relationship with health care professionals. Without a surrogate decision-maker to guide the team towards a decision that Ms. Lopez would choose for herself if she had a better understanding of her medical circumstances, health care professionals must choose between the harm of overriding her preferences (even if not autonomous) and the harm of not providing beneficial medical interventions. Johnson and Fabi help to specify the scope of each. There is a spectrum here. Compelling medical interventions that are brief and temporary but are life-sustaining and/or would restore decision-making capacity can often be ethically justified. Compelling painful interventions over time without likely benefit of survival and restoring decision-making capacity are unlikely to be ethically justifiable. As shown in Johnson and Fabi’s essay, each intervention has to be considered separately; in Ms. Lopez’s case, the psychiatric interventions have to be analyzed separately from any interventions for the incidental finding of her brain mass.

In this space, justice is a key consideration: important to name though perhaps impossible to resolve. Overriding Ms. Lopez’ objections would be disrespectful of her agency over her body and life (even if not technically disrespectful of autonomy). This is an injustice that is disproportionately experienced by patients with psychiatric illness. At the same time, Ms. Lopez may be more likely to not receive life-sustaining and otherwise beneficial medical care due to the very same stigma around psychiatric illness. How should providers balance justice as respecting Ms. Lopez’s agency with justice as ensuring she receives standard of care? This is a difficult balance that is important to name, though caring clinicians and ethicists may disagree about which way to err. Johnson and Fabi ask the important question of “have we done enough?” Have health care professionals equitably engaged with Ms. Lopez to meet her needs by building trust and supporting medically beneficial interventions, while also demonstrating respect for her agency? Is there more that individual clinicians as well as inpatient institutions should be doing to advocate for patients when illness and bias impede them advocating for themselves?

– Gina Campelia, Laura Guidry-Grimes, and Adira Hulkower

This is the second clinical ethics case study in a periodic series for Hastings Bioethics Forum, based on real cases. Read the first case.

Learn more about the series, Clinical Ethics Case Studies for Hastings Bioethics Forum.

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