Ethics consultations in neuro-oncology.

BACKGROUND: Management of patients with brain tumors can lead to ethical and decisional dilemmas. The aim of this study was to characterize ethical conflicts encountered in neuro-oncologic patients. METHODS: Retrospective review of ethics consultations performed upon patients with primary and metastatic brain tumors at a tertiary cancer center. An ethics consultation database was examined to characterize ethical conflicts, contextual factors, and interventions by the consultation team. RESULTS: Fifty consultations were reviewed; 28 (56%) patients were women, median age 54 (range 4-86); 27 (54%) patients had a primary central nervous system malignancy; 20 (40%) had brain metastasis. At the time of consultations, 41 (82%) patients lacked decisional capacity; 48 (96%) had a designated surrogate decision maker; 3 (6%) had an advance directive outlining wishes regarding medical treatment; 12 (24%) had a Do Not Attempt Resuscitation (DNAR) order. Ethical conflicts centered upon management of end-of-life (EOL) circumstances in 37 (72%) of cases; of these, 30 did not have decisional capacity. The most common ethical issues were DNAR status, surrogate decision making, and request for nonbeneficial treatment. Consultants resolved conflicts by facilitating decision making for incapacitated patients in 30 (60%) cases, communication between conflicting parties in 10 (20%), and re-articulation of patients' previously stated wishes in 6 (12%). CONCLUSIONS: Decisional capacity at EOL represents the primary ethical challenge in care of neuro-oncologic patients. Incomplete awareness among surrogate decision makers of patients' prognosis and preferences contributes to communication gaps and dilemmas. Early facilitation of communication between patients, caregivers, and medical providers may prevent or mitigate conflicts and allow the enactment of patients' goals and values.

End of life: Expert care and support, not physician-hastened death.

In legal physician-hastened death, a physician prescribes medication with the primary intent of causing the death of a willing terminally ill patient. This practice differs radically from palliative sedation, intended to relieve a patient's suffering rather than cause a patient's death. In this position paper, we argue that the practice of physician-hastened death is contrary to the interests of patients, their families, and the sound ethical practice of medicine. Therefore, the American Academy of Neurology should advise its members against this practice, as it had done until 2018.

Frequency and Predictors of Acute Hospitalization Before Death in Patients With Glioblastoma.

CONTEXT: Glioblastoma (GBM) is a devastating and incurable neuro-oncologic disease, and issues related to the end of life are almost invariably a matter of "when," not a matter of "if." Optimizing symptom management and quality of life in later stages of disease is of the utmost priority. OBJECTIVES: To examine the frequency of and factors associated with late acute hospital admission before death in patients with GBM. METHODS: Case-control study comparing patients with GBM admitted to the hospital within one month of death to those without late hospital admission. RESULTS: Of 385 GBM patients followed to death at Memorial Sloan Kettering Cancer Center, 164 (42.6%) were admitted within a month of death, most frequently (140, or 85%) to manage neurologic decline. Of these, 56 (34%) had intensive care unit care during this admission and 22 (13%), 18 (11%), and 2 (1%) received mechanical ventilation, enteral feeding tubes, or cardiopulmonary resuscitation, respectively. In multivariable analysis, in-hospital chaplaincy consultation, and participation in a therapeutic clinical trial, both at any time in the GBM disease course, were significantly associated with late hospital admission. CONCLUSIONS: Late hospitalization is frequent in GBM and often involves intensive care unit care in the management of clinical events that are part of the GBM dying process. Patients with a tendency to use religious support and those enrolled in clinical trials may be at greater risk for late hospitalization. Dedicated prospective study is needed to determine predictors of late hospitalization and to examine the impact of late acute medical care on quality of life in GBM.

Promoting excellence in end-of-life care in ALS.

The type and quality of end-of-life care varies greatly in ALS; the time to initiate end-of-life care is not defined, and decision making is hampered by logistical and financial barriers. There has been no systematic review of these issues in ALS. The goals of this initiative are to: 1) improve end-of-life care for patients with ALS and families based on what limited evidence is available; 2) increase awareness, interest, and debate on the end-of-life care in ALS; and 3) identify areas needed for new prospective clinical research. The ALS Peer Workgroup reviewed the literature and 1) identified the current state of knowledge, 2) analysed the gaps in care, and 3) provided recommendations for standard of care and future research. It was shown that areas of investigation are needed on the incorporation of an interdisciplinary approach to care in ALS that includes: psychosocial evaluation and spiritual care; the use of validated instruments to assess patient and caregiver quality of life; and the establishment of proactive caregiver programs. Several public policy changes that will improve coverage for medical care, hospice, and caregiver costs are also reviewed. More clinical evidence is needed on how to provide optimal end-of-life care specifically in ALS.