Bioethics Forum Essay
Should He Have Brain Surgery?
[This is the first in a periodic series of clinical ethics case studies for Hastings Bioethics Forum, based on real cases.]
J is a 21-year-old male with cerebral palsy, quadriplegia, and intellectual disability. He is unable to communicate verbally and requires assistance with all activities of daily living. He typically responds to some touch and speech with subtle bodily movements, such as tilting his head in the direction of his mother’s voice, but in recent weeks his reaction to these stimuli has diminished to the point that he is now almost entirely unresponsive. Alarmed, his mother, Nancy, brought him to the emergency department of our hospital.
J was admitted to the neuro intensive care unit (NICU) for a workup and observation. MRI revealed a significant mass on the left side of his brain, later determined to be a meningioma–a noncancerous but potentially dangerous growth. The neurosurgery team, which works closely with the intensivists who care for NICU patients around the clock, describe to Nancy a surgical intervention that is considered the standard of care for patients with J’s condition. Surgery is likely to return the patient to his baseline, at least temporarily—meaning that he could once again respond physically to touch and speech. But the surgery carries risks, including infection, bleeding, and damage to surrounding brain tissue. And even with surgery, the mass could begin regrowing in a matter of weeks. Left untreated, the tumor would grow and become fatal, likely within months.
The NICU team, however, has concerns about this care plan. They question whether the benefits of surgery outweigh the risks for this patient and consult the clinical ethics service. “We might be able to get the patient back to where he was,” the NICU intensivist tells the clinical ethicists, “but should we consider that a good outcome?”
Ethical Analysis and Process
The NICU physicians are concerned that J may benefit less from the surgery than many other meningioma patients because of his baseline quality of life. When asked to elaborate, one of the physicians says that he thinks that J’s intellectual disability limits his ability to understand and appreciate the value of continued existence, and, therefore, the surgery would not benefit J “in any meaningful way.”
The ethicists recommend a family meeting with Nancy to ensure thorough consideration of the options, engaging both Nancy’s values and the perspective of the NICU team. Nancy strongly advocates moving forward with surgery, saying to the ethicists, “I just want the doctors to treat my son the way they’d treat any other patient.” The intensivist explains the team’s concerns to Nancy, raising the possibility that because J would only “benefit minimally” from surgery it might not be ethical to expose him to the risks of the procedure. Nancy challenges this ethical framing and offers an alternative interpretation: “He’ll benefit in the same way everyone else does. He’ll be back to the way he was before the tumor.” Growing emotional, Nancy introduces another detail that is important to her. “He is the only family I have,” she says. “I just don’t know what I’d do without him.”
Nancy’s request draws on a foundational claim of justice that like cases should be treated as like, which requires that people be treated in the same way unless there is a morally relevant difference between them. Given that surgery is considered the standard of care, therefore, not offering the procedure would only be ethically supportable if there were such a difference between J and other patients to whom surgery would be offered.
The ethicists ask themselves whether the difference between J and other patients is morally relevant to the decision to offer surgery. While many patients would see profound benefits from this kind of intervention (e.g., restored ability to walk, communicate, and care for themselves), J’s benefits would be relatively modest. And so, as argued by the NICU team, the risk-benefit ratio of the intervention could be considered less favorable for J than for many other patients, justifying a departure from the standard of care in J’s case.
Also at issue is the concept of benefit, which the NICU team and Nancy apply differently. The NICU team conceives of benefit as absolute functional improvement, whereas Nancy has in mind improvement relative to J’s baseline function. Under the latter framing, J stands to benefit in the same way that other patients do from the surgery. The procedure could extend his life and restore him to his previous state. This approach rejects judgments made by the NICU team about the quality of life of people with intellectual disabilities. Such judgments have been criticized as biased or irrelevant. While we did not have reason to suspect that the team was questioning the decision to proceed with the surgery based on overt biases, it was clear that values-based judgments about the quality of J’s life were at play. When values-based disagreements arise, it is often ethically preferable to act in accordance with the values of the patient or surrogate rather than those of the medical team. Proceeding with surgery, therefore, would also be an ethical option.
Which course of action is ethically preferable? Conflicting conceptions of benefit support different justice-based recommendations. The clinical ethicists, therefore, turned to other considerations to come to a decision. Despite Nancy’s claim that J has “a will to live,” he does not now, and never has had, the ability to articulate his values or express preferences about what kind of medical care he would want. Nancy serves as his surrogate and, in that role, has a duty to make decisions on his behalf based on what is in his best interests. Nancy appeared to be sincere in her desire to advocate for J’s well-being. She also, however, referenced her own interest–the impact that losing her son would have on her. While surrogate decisions based on self-regarding reasons can be ethically problematic, the ethics team did not consider Nancy’s desire to proceed with the intervention to be counter to J’s best interests. The ethicists, therefore, recommended proceeding with the surgery.
Janet Malek, PhD, (@JanetMalekEthx) is an associate professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and a clinical ethicist at Houston Methodist Hospital. She is a member of the ASBH task force writing the Core Competencies for Ethics Consultation, 3rd Edition. Ryan H. Nelson, PhD, is an assistant professor in the Center for Medical Ethics and Health Policy at Baylor and a clinical ethicist at Houston Methodist Hospital.
Series Editors’ Comment: Counteracting Ableism in Treatment Decisions
J’s case illustrates the ways in which ableism can alter health care practitioners’ calculus of medical risk and benefit. His case points to the need for clinicians’ careful application of the moral obligations of respect for persons, beneficence, and justice. Clinical ethicists regularly confront biased correlations between disability and poor quality of life, coming from clinicians, bioethicists, and sometimes from patients and their families. As clinical ethicists, we have a duty to recognize and counteract this form of bias and discrimination, but also to be cautious to not make our own assumptions about what the patient would choose or what would be best (similarly a form of ableism).
Malek and Nelson rightly direct the team to critically reflect on the differences between surgical benefit in terms of commonly expected functional improvement (which tends to be defined by ableist norms) and surgical benefit relative to J’s baseline function. This framing helps to identify ableism in this case, and to counteract that ableism by directing care toward supporting the patient’s subjective experience of quality of life.
Of course, this effort is complicated for a patient who cannot speak for himself. The team must rely on a surrogate decision-maker who knows the patient well, without ever fully understanding the patient’s values and experiences. Caution is warranted to ensure that the patient’s interest is kept front and center. Nancy’s relationship-oriented concern–“He’s the only family I have”–should not be misconstrued as a conflict of interest or selfish reasoning. It’s likely that the caring relationship is beneficial to both J and Nancy.
It is reasonable for a surrogate decision-maker, especially a parent of a patient with cognitive impairments, to consider their loving connections with the patient, even while centering the patient’s perspective. After all, their understanding of the patient depends on this loving connection. Malek and Nelson are right to question how to recognize and incorporate relational decision-making in a surrogate decision-making framework that prioritizes respect for the individual patient. As a general point, clinical ethicists should work with the team to maximize the potential for patients, regardless of disability status, to communicate for themselves, which may require assistive technology or creative problem-solving. Patients with intellectual disabilities are often capable of communicating, and a support person can be essential in advocating for the patient’s perspective.
At an interpersonal level, how should clinical ethicists identify potential ableism and name it in conversation or in a chart note? At an institutional level, how should clinical ethicists collaborate with their colleagues to minimize the role of bias in policies and standards? Should expectations for relational decision-making be adjusted for patients with intellectual disabilities? Ultimately, we hope that J’s story motivates this sort of reflection among clinical ethicists about how to best identify and counteract ableist biases that arise in health care ethics consultations, even among well-intentioned health care professionals.
– Gina Campelia, Laura Guidry-Grimes, and Adira Hulkower
Learn more about the series, Clinical Ethics Case Studies for Hastings Bioethics Forum.
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