During ethics consults for neuro-oncologic patients, the biggest ethical challenge is decisional capacity at end of life, according to the authors of a recent study.1 “Patients with incurable brain cancer are a vulnerable patient population from an emotional standpoint due to the gravity of the cancer diagnosis and prognosis, as well as from a physical/cognitive standpoint, given that the cancer can impair normal brain function in these realms,” says Elizabeth Neil, MD, a neuro-oncologist at the University of Minnesota Medical School and Minnesota Health Fairview.
Researchers retrospectively reviewed 50 ethics consultations involving patients with brain tumors. At the time of the ethics consults, 82% of the patients lacked decisional capacity. Almost all (96%) had a surrogate decision-maker. In the setting of a terminal condition, goals of care need to be identified so that they can be honored. “Unfortunately, in some instances, decline of a patient’s well-being can be rapid and unexpected,” Neil laments.
If discussions do not happen early, when the patient likely is at his or her peak functional status, it leaves caregivers, families, and physicians with little guidance. These issues came up most often during the ethics consults: Confusion over the patient’s Do Not Attempt Resuscitation status, how to respond to requests for nonbeneficial treatment, and issues with surrogate decision-making. “Review of these ethics consultations affirmed the difficult nature of patient care for physicians and the lack of reassurance on behalf of caregivers or family that can stem from a lack of knowledge or acceptance of a patient’s end-of-life plan,” Neil says.
Ethics consultants resolved the conflicts by facilitating communication, re-articulating patients’ previously stated wishes, and facilitating decision-making for incapacitated patients. The study’s findings support the need for outpatient palliative care and primary neuro-oncology involvement early in the treatment course. “From there, excellent communication between the patient and their physician and caregivers/family regarding updated goals of care is critical,” Neil says.
- Sener U, Neil EC, Scharf A, et al. Ethics consultations in neuro-oncology. Neurooncol Pract 2021;8:539-549.