Journal of palliative medicine
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Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.
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Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective: To examine sources of and changes in stress among parents of children with SNI in the PICU. To compare stressors with "good parent" attributes that describe duties parents aim to uphold for their child. ⋯ Stress was moderate at admission (mean 6.8, standard deviation [SD] ±1.7) and discharge (mean 6, SD ±2); 32% (n = 8) reported stress trajectories that stayed the same or increased. Major themes included uncertainty, advocacy, and vulnerability and related closely to "good parent" attributes. Conclusion: Stress among parents of children with SNI related to uncertainty, advocacy, and vulnerability and suggested tensions with "good parent" attributes.
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Background: Black Americans experience the highest prevalence of heart failure (HF) and the worst clinical outcomes of any racial or ethnic group, but little is known about end-of-life care for this population. Objective: Compare treatment intensity between Black and White older adults with HF near the end of life. Design: Negative binomial and logistic regression analyses of pooled, cross-sectional data from the Health and Retirement Study (HRS). ⋯ However, Black HF patients were more likely to spend time on life support (odds ratio [OR] = 2.16, confidence interval [CI] = 1.35-3.44, p = 0.00) and more likely to die in a hospital (OR = 1.53, CI = 1.03-2.28, p = 0.04) than White HF patients. Conclusion: Black HF patients were more likely to die in a hospital and to spend time on life support than White HF patients. Thoughtful and consistent engagement with HF patients regarding treatment preferences is an important step in addressing inequities.
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Palliative care improves outcomes, yet rural residents often lack adequate and equitable access. This study provides practical tips to address palliative care (PC)-related challenges in rural communities. ⋯ Despite complex barriers to access, providers can tailor PC to be patient-centered, respect local values, and bridge gaps. The "Top 10" format emphasizes the relevant issues to enable clinicians to provide optimal care for people from rural areas.
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Objective: The electronic health record (EHR) has emerged as a fundamental tool but has focused on physical care delivery. Psychosocial screenings and interventions are central to palliative care that supports whole person care models; however, EHR innovations to capture psychosocial care have not been optimized. Material and Methods: A narrative review was conducted from 2009 to March 2023. ⋯ Recommendations highlight the importance of shared priorities and collaboration with key stakeholders to fully execute on the clinical utility of EHRs. Future work will continue to evaluate data collection tools and systematic approaches to capture psychological needs and social environment and its impact on health outcomes and quality of life. Conclusion: This review will expand on opportunities for automated reporting of psychosocial care in the context of seriously ill.