Rita Caroline Crooms

Background: Poor prognosis among older adults with high-grade glioma (HGG) heightens need for longitudinal serious illness conversations (SIC). We analyzed SIC quality among older HGG patients with and without palliative care consultation (PCC). Methods: We retrospectively identified HGG patients aged ≥65 years from a single-site cancer registry and abstracted SIC documentation from their clinical records. Content: Using an established codebook from the Ariadne Labs Serious Illness Conversation Guide (SICG), a standardized framework for comprehensive, high-quality SIC, we identified documentation about (a) prognostication; (b) goals of care; and (c) end-of-life care planning. Comprehensiveness: Using 16 possible subtopics, we calculated a summary score (range 0-16). Timing: We identified the first occurrence of documentation across disease phases: (a) diagnostic; (b) first-line treatment; (c) second-line treatment; and (d) end of life (after cancer-directed treatment). We compared documentation between patients who (a) received PCC vs not and (b) received early PCC (before second-line treatment) vs later or no PCC. Results: Among 158 older adults, 102 (64.6%) had documented SIC: 89 (56.3%) on prognostication; 86 (54.4%) on goals of care; and 79 (50.6%) on end-of-life care. Half the cohort never documented SIC (35.4%) or had it only in the end-of-life phase (15.8%). Median summary score was higher in patients with any PCC vs none (11 [8, 13] vs 0 [0, 4]; P < .01) and early vs late or no PCC (7 [4, 10] vs 0 [0, 2]; P < .01). Discussion: We identified gaps in frequency, timeliness, and scope of SIC documentation. PCC may improve SIC documentation quality.

As neuropalliative care is better recognized and more widely utilized, there is as great a need for clinicians trained in the field as there is for disease-specific symptom management, advance care planning, and end-of-life care. In this manuscript, we describe potential career trajectories in neuropalliative care. For clinicians, this includes educational and training opportunities within primary neuropalliative care (integrating palliative care principles into usual neurology practice), specialty neuropalliative care (completing a hospice and palliative medicine fellowship), and hospice. We also describe considerations for establishing new clinical neuropalliative practices and highlight neuropalliative education and research as key areas for advancing the field.

Background: Patients with high-grade glioma have high palliative care needs, yet few receive palliative care consultation. This study aims to explore themes on (1) benefits of primary (delivered by neuro-oncologists) and specialty palliative care (SPC) and (2) barriers to SPC referral, according to a diverse sample of clinicians. Methods: From September 2021 to May 2023, 10 palliative physicians and 10 neuro-oncologists were recruited via purposive sampling for diversity in geographic setting, seniority, and practice structure. Semistructured, 45-minute interviews were audio-recorded, professionally transcribed, and coded by 2 investigators. A qualitative, phenomenological approach to thematic analysis was used. Results: Regarding primary palliative care, (1) neuro-oncologists have primary ownership of cancer-directed treatment and palliative management and (2) the neuro-oncology clinic is glioma patients’ medical home. Regarding SPC, (1) palliative specialists’ approach is beneficial even without disease-specific expertise; (2) palliative specialists have time to comprehensively address palliative needs; and (3) earlier SPC enhances its benefits. For referral barriers, (1) appointment burden can be mitigated with telehealth, home-based, and embedded palliative care; (2) heightened stigma associating SPC with hospice in a population with high death anxiety can be mitigated with earlier referral to promote rapport-building; and (3) lack of neuro-oncologic expertise among palliative specialists can be mitigated by emphasizing their role in managing nonneurologic symptoms, coping support, and anticipatory guidance. Conclusions: These themes emphasize the central role of neuro-oncologists in addressing palliative care needs in glioma, without obviating the need for or benefits of SPC. Tailored models may be needed to optimize the balance of primary and specialty palliative care in glioma.

Purpose Adults with high-grade glioma (HGG), WHO grade III or IV, have substantial palliative care needs. Our aim was to determine occurrence, timing, and factors associated with palliative care consultation (PCC) in HGG at one large academic institution. Methods HGG patients receiving care between 08/1/2011 and 01/23/2020 were identified retrospectively from a multi-center healthcare system cancer registry. Patients were stratified by any PCC (yes/no), and timing of initial PCC by disease phase: diagnosis (before radiation), during initial treatment (first-line chemotherapy/radiation), second-line treatment(s), or end-of-life (after last chemotherapy). Results Of 621 HGG patients, 134 (21.58%) received PCC with the vast majority occurring during hospital admission [111 (82.84%)]. Of the 134, 14 (10.45%) were referred during the diagnostic phase; 35 (26.12%) during initial treatment; 20 (14.93%) during second-line treatment; and 65 (48.51%) during end of life. In multivariable logistic regression, only higher Charlson Comorbidity Index was associated with greater odds of PCC [OR 1.3 (95% CI 1.2–1.4), p < 0.01]; but not age or histopathology. Patients who received PCC prior to end of life had longer survival from diagnosis than those referred during end of life [16.5 (8, 24) months vs. 11 (4, 17); p < 0.01]. Conclusion A minority of HGG patients ever received PCC, which primarily occurred in the inpatient setting, and nearly half during the end-of-life phase. Thus, only about one in ten patients in the entire cohort potentially received the benefits of earlier PCC despite earlier referral having an association with longer survival. Further studies should elucidate barriers and facilitators to early PCC in HGG.

Purpose of Review High-grade gliomas (HGG) are rare brain tumors that cause disproportionate suffering and mortality. Palliative care, whose aim is to relieve the symptoms and stressors of serious illness, may benefit patients with HGG and their families. In this review, we summarize the extant literature and provide recommendations for addressing the symptom management and communication needs of brain tumor patients and their caregivers at key points in the illness trajectory: initial diagnosis; during upfront treatment; disease recurrence; end-of-life period; and after death during bereavement. Recent Findings Patients with HGG experience highly intrusive symptoms, cognitive and functional decline, and emotional and existential distress throughout the disease course. The caregiver burden is also substantial during the patient’s illness and after death. There is limited evidence to guide the palliative management of these issues. Summary Palliative care is likely to benefit patients with HGG, yet further research is needed to optimize the delivery of palliative care in neuro-oncology.

High-grade glioma (HGG) is characterized by debilitating neurologic symptoms and poor prognosis. Some of the suffering this disease engenders may be ameliorated through palliative care, which improves quality of life for seriously ill patients by optimizing symptom management and psychosocial support, which can be delivered concurrently with cancer-directed treatments. In this article, we review palliative care needs associated with HGG and identify opportunities for primary and specialty palliative care interventions. Patients with HGG and their caregivers experience high levels of distress due to physical, emotional, and cognitive symptoms that negatively impact quality of life and functional independence, all in the context of limited life expectancy. However, patients typically have limited contact with specialty palliative care until the end of life, and there is no established model for ensuring their palliative care needs are met throughout the disease course. We identify low rates of advance care planning, misconceptions about palliative care being synonymous with end-of-life care, and the unique neurologic needs of this patient population as some of the potential barriers to increased palliative interventions. Further research is needed to define the optimal roles of neuro-oncologists and palliative care specialists in the management of this illness and to establish appropriate timing and models for palliative care delivery.