Journal of palliative medicine
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Background: Over one million Americans have died from coronavirus disease 2019 (COVID-19). Increased isolation resulting from social distancing, public health restrictions, and hospital visit limitations may affect the ability to perform normal mourning practices. Grief experts expect higher rates of prolonged grief disorder (PGD) because of the pandemic, but empirical evidence is limited. ⋯ In adjusted analyses, COVID-19-related death was associated with an increased PG-13-R score (coefficient: 6.17; p = 0.031), while hospice use was associated with a decline in the PG-13-R score (coefficient: -3.68; p = 0.049). Conclusion: Individuals have adapted to COVID-19 societal changes, including how they grieve. However, COVID-19-related deaths may lead to a higher risk for PGD, consistent with COVID-19 grief studies globally.
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Background: Palliative care literature indicates a dearth of programs addressing the psychosocial needs of adolescents and young adults (AYAs). Objectives: This study assessed patient-reported experiences of a palliative care peer support program, analyzed psychometric qualities of the program evaluation, and examined associations with quality-of-life scores to assess validity and potential impact on aspects of AYA quality of life. Design: This retrospective, cross-sectional study described self-reported Streetlight program evaluation and quality of life of AYA patients, exploratory factor analysis of survey responses, and analysis of associations with quality of life. ⋯ Analyses identified three factors explaining 61% of variance in Streetlight program evaluation responses: "Friendships and Support" (26%); "Coping, Family, and Providers" (20%); and "Diversion and Respect" (15%). Significant positive associations were found between Streetlight evaluation scores and YQOL-SF Belief in Self and Family factor scores, as well as between Streetlight evaluation Friendships and Support factor scores, and YQOL-SF total and factor-specific scores. Conclusions: Results suggest that the Streetlight program is a viable model to facilitate positive experiences, opportunities for socialization, and meaningful peer support for AYA patients.
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Background: As patients live longer with stage IV nonsmall cell lung cancer, correlates of end-of-life (EOL) care and experience are increasingly relevant. Methods: We, therefore, prospectively examined associations among psychospirituality (Center for Epidemiologic Studies Depression Scale, Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being), discussions around fear of death and disease progression, and hospital-based EOL care in patients and caregivers. Patients additionally reported symptom burden (MD Anderson Symptom Inventory-Lung Cancer total) and quality of life (QOL) (quality-of-life at EOL). ⋯ Caregiver spiritual well-being (r = 0.34, p = 0.02) and depression (r = -0.31, p = 0.03) were associated with EOL care metrics. Patients who "held back" more of their fear of death or disease progression experienced greater symptom burden (r = 0.41, p < 0.001) and poorer QOL (r = -0.44, p < 0.001). Conclusion: For couples facing prolonged metastatic disease, psychospirituality is highly relevant to EOL care with potential sequelae of withholding one's fear regarding death or disease progression.
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Context: A daily nine-item "Handbook for Self-Care at Work" was created to increase the well-being and satisfaction of the staff at the department of palliative care of a tertiary oncological center in the United States. Objectives: To evaluate the perceived usefulness of and adherence to the Handbook. Design, Setting and Participants: An anonymous survey was conducted among the palliative care staff asking for the frequency of utilization and the perception of usefulness of the Handbook. ⋯ During the COVID-19 pandemic, 32 (82%) respondents found the Handbook to be as/somewhat more/much more useful, and 29 (75%) were able to adhere to the items as/somewhat more/much more often than before. Conclusion: Most respondents found the Handbook useful and were able to accomplish the items most of the days. During the COVID-19 pandemic, the staff felt that the Handbook was more useful.
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Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. ⋯ Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended.