Decision-Making Capacity: The Ethical Core of Patient-Centered Oncology

In a collaborative podcast with the American Psychosocial Oncology Society hosted by Daniel C. McFarland, DO, guests Louis P. Voigt, MD, and Yesne Alici, MD, discussed the ethical and clinical complexities of assessing decision-making capacity (DMC) in oncology, emphasizing its role as the ethical core of person-centered care. The discussion began by dissecting modern medicine’s need for formal DMC assessment. Voigt framed DMC as a fundamental issue of patient rights and respect, asserting that every human being has absolute rights and that the integrity of a person requires honoring their self-determination. He advocated for clinicians to act as professionals, earn trust, customize their approach based on individual needs through precision medicine, and demonstrate humility by re-explaining information when a patient cannot summarize their understanding.

Alici provided a detailed clinical framework for DMC, defining it as a person’s ability to decide on the specific issue at hand while appreciating the foreseeable consequences. She outlined the 4 key elements, or pillars, of the assessment: the patient’s ability to understand the information, to appreciate the risks and benefits, to provide a rationalization for the decision to ensure no delusional thinking interferes, and to communicate a consistent choice. She clarified that DMC is decision-specific and time-dependent, emphasizing that conditions like dementia, schizophrenia, major depression, or even a central nervous system malignancy do not automatically mean a patient lacks capacity; it must be assessed for each situation and may be restored if cases like delirium are reversible. She cautioned that clinicians must be mindful of potential mislabeling when patients with aphasia interact, as simple gestures may not fully represent informed consent.

Finally, the experts addressed the crucial implications that follow an assessment of incapacity. Voigt highlighted that a lack of DMC is not a "stop sign"; decisions must still be made, requiring the health care team to look to a designated proxy or the patient’s next-of-kin. He stressed the need for hospitals to establish system-wide processes and workflows to prepare all stakeholders for these contingencies and help patients become familiar with advanced directives, thereby reducing the immense emotional burden placed on surrogates who must perform substituted judgment. McFarland concluded that being aware of DMC elevates the quality of care, reinforces an ethical climate, and enhances the entire organization.

McFarland is the director of the Psycho-Oncology Program at Wilmot Cancer Center and a medical oncologist who specializes in head, neck, and lung cancer, in addition to being the psycho-oncology editorial advisory board member for the journal ONCOLOGY. Voigt is an intensivist and chair of the Ethics Committee at Memorial Sloan Kettering Cancer Center (MSKCC). Alici is vice chair of Clinical Operations in the Department of Psychiatry and Behavioral Sciences, clinical director, associate attending psychiatrist, and medical director of the Biobehavioral Health Clinic at MSKCC.