Journal of palliative medicine最新文献

Introduction: Worldwide, millions of children experience life-limiting or life-threatening illnesses. Providing quality palliative care requires interventions that target the psychological, psychosocial, emotional, and spiritual needs of these children and their families. Among these are legacy-making interventions (LMIs), which encompass the creation of tangible memories, intangible experiences, and Living Legacy Projects. Despite their increasing implementation, the effects of LMIs within pediatrics remain largely underexplored, with their real impact on children and families being unknown. Objectives: To evaluate the impact of LMIs on pediatric patients, their families, and health care providers in the context of pediatric palliative care (PPC). Materials and Methods: We conducted a narrative review of the literature. Database records were extracted from PubMed, Web of Science, and EMBASE using search terms related to the topic. Of the 224 articles, 61 were selected after excluding duplicates and unrelated articles. These were read in full to verify adherence to the inclusion criteria: studies that evaluated the psychosocial, emotional, and psychological impact of LMIs on children, family members, and health care providers, with 26 articles being selected for thematic analysis. Results: The existence of positive impacts was verified in the three groups considered. In pediatric patients, studies reported enhanced emotional expression, a strengthened sense of remembrance, and improved coping in stressful situations. For family members, studies highlighted a reinforced parent-child connection, greater empowerment to honor their children's lives, and enhanced coping abilities to deal with grief and loss. Among health care providers, studies described improvements in the processing and reflection of difficult emotions. Conclusions: Different types of LMIs have beneficial effects on pediatric patients with palliative needs, their family members, and health care providers. The evidence gathered in this review supports the integration of LMIs into PPC. Future studies should continue to explore the effects of these interventions, particularly focusing on children's experiences.

Background: The Latino community is at high risk for developing dementia. Palliative care can support family caregivers of people living with dementia (PLWD). Objectives: To explore the experiences of New York City (NYC) Latino family caregivers of PLWD and identify implications for palliative care. Design: We conducted qualitative interviews from June to November 2024 with Latino family caregivers of PLWD. Caregivers were recruited from a single NYC health system. We asked open-ended questions exploring caregivers' experiences with dementia, palliative care, and culture. Interviews were recorded, transcribed, and analyzed using thematic analysis with deductive and inductive coding. Results: Nineteen Latino family caregivers participated. Four interviews were conducted in Spanish and caregivers represented five countries of origin. We identified four themes related to palliative care for Latino family caregivers of PLWD. Caregivers Have a Limited Awareness of Palliative Care (Theme 1) was the backdrop of all other themes. Caregiving Is a Labor of Love (Theme 2) describes caregiving challenges, and Caregiving Is an Act of Strength and Resilience (Theme 3) describes how caregivers summarized their sources of support and needs. Integrating Cultural Values into Caregiving (Theme 4) provided a lens to better understand Latino caregivers' unique experiences. Conclusions: Despite describing unmet needs, caregivers were not familiar with palliative care. In the presence of Latino cultural values, caregivers may underestimate all they do and not seek additional support. Palliative care should be introduced as a supportive service to equip families in taking care of their loved ones as they would want.

Symptom assessment is crucial in caring for people with cancer and should be a cornerstone in their care. Symptoms precede imaging modalities in diagnosing cancer and in evaluating efficacy of treatment, as well as being an integral part of the patient's experience with their illness. A comprehensive literature review was conducted when selecting these principles. This article presents ten important principles in symptom assessment chosen for their relevance in optimizing cancer care for patients, increasing the efficacy of shared decision making, and improving patient outcomes. These ten principles should provide a framework for symptom assessment that will optimize cancer care delivery and drive further research in the area.

Background: Patients with advanced brain tumors often experience dysphagia and excessive drooling, leading to respiratory complications and a reduced quality of life. We evaluated the clinical utility of transdermal scopolamine (TS) in pediatric patients with brain tumors. Methods: A 5.0% scopolamine ointment was prepared in-house and applied once daily to the mastoid regions behind the ears. Results: Five patients (four children and one adolescent) with brain tumors received TS treatment. All patients had low Lansky/Karnofsky performance status scores, ranging from 20 to 40. Within two weeks of treatment, four patients showed objective improvements, including reduced suctioning and oxygen requirements and alleviation of respiratory symptoms. No severe or unexpected adverse events related to TS were observed. Four patients were able to transition to home-based care. Conclusions: The findings of this study suggest that TS may be a safe and effective option for managing salivation in this population.

Purpose: Although racial and ethnic cancer pain disparities are well-documented, there is insufficient Asian American representation in extant literature, leading to inadequate knowledge about pain outcomes in this population. In addition, the prevalence of depression and its relationship with cancer pain in Asian American patients are poorly characterized. This study evaluated pain differences between Asian American and white patients with cancer and the role of depressive symptoms. Methods: Data from two randomized clinical trials investigating integrative therapies for chronic musculoskeletal cancer pain were analyzed to examine the association between race and pain interference using bivariate analyses and linear regression models. We pooled participants from both trials, which enrolled cancer patients with pain and used identical pain and depression assessments, to increase the sample size of Asian American cancer patients, a historically underrepresented population in pain and depression research. Results: Compared to White counterparts, Asian American patients reported greater pain interference (5.5 vs. 4.7, p = 0.016) and depressive symptoms (7.1 vs. 5.9, p = 0.047). The Asian race was associated with pain interference (coef. = 0.83, 95% CI: 0.1 to 1.5, p = 0.016) in bivariate analysis. When depressive symptoms were added to regression models, Asian race was no longer associated with pain interference (coef. = 0.51, 95% CI: -0.09 to 1.1, p = 0.097). Conclusions: Higher pain interference levels among Asian Americans were partly driven by greater depression severity. These findings highlight the mental health burden among the Asian American cancer population and suggest that treatment for depressive symptoms may need to be incorporated in oncology care and pain management for this population. Importantly, results suggest Asian Americans affected by cancer may be at increased risk for poorly managed pain and depressive symptoms.

Background: National guidelines recommend palliative care (PC) alongside life-sustaining treatment for older adults with severe trauma. However, outcomes associated with PC for these patients are not well-defined. Objectives: To determine frequency of inpatient PC process documentation in older adults with severe trauma and test associations with postdischarge health care utilization. Design: Retrospective cohort study using electronic health record data linked to Medicare claims. Setting/Subjects: We included adults ≥66 years old admitted to a large, regional U.S. health care system with severe trauma (2016-2018) using consensus criteria for serious illness in trauma. Measurements: Natural language processing was used to measure documentation of five inpatient PC processes: code status limitations, goals-of-care (GOC) conversations, hospice discussions, PC consultations, and health care proxy designations. Associations between PC processes and postdischarge health care utilization were tested using multivariable regression. Results: Among 1267 admissions, the median age was 82 years (interquartile range [IQR] 75-88), and median injury severity score (0-75, higher is worse) was 16 (IQR 9-21); ≥1 PC process was documented in 81%. Among those surviving hospitalization (87%), one-year mortality was 26%. Documentation of ≥1 PC process was not significantly associated with differences in mean hospital days (16 vs. 19), home days (306 vs. 307), emergency department visits (2.3 vs. 2.2), or intensive care unit days (0.6 vs. 0.9) at one year. PC processes were significantly associated with subsequent hospice enrollment (p < 0.01). Conclusions: PC was not associated with reduced health care utilization in older adults after trauma but was associated with one-year hospice enrollment. GOC conversations, specialty PC, and inpatient hospice discussions had low utilization, highlighting target areas for improvements in care delivery.

Background: Pediatric intensive care unit (PICU) nurses are regularly exposed to high-stress situations, particularly when dealing with patient death and postmortem care. While much attention has been paid to the physical demands of their role, the emotional and psychological impacts of these experiences are often overlooked. Understanding how nurses regulate their emotions in such high-pressure environments is essential for improving their well-being and providing better care. Objective: This study aims to explore the emotional burdens faced by PICU nurses, particularly in the context of patient death and postmortem care. It examines how nurses regulate their emotions in response to these experiences and how these emotional responses affect their professional roles and personal lives. Methods: The study was conducted at Zhejiang Children's Hospital. A total of 15 PICU nurses, with at least two years of experience, participated in semi-structured, in-depth interviews. The data were analyzed using reflexive thematic analysis, allowing for a detailed exploration of emotional experiences, coping strategies, and the emotional impact of postmortem care. Results: The analysis revealed four major themes: (1) emotional and physical strain of patient loss; (2) fear and unease in postmortem care; (3) navigating professionalism amid emotional turmoil; and (4) impact on parenting and career choices. Conclusions: PICU nurses face significant emotional challenges when dealing with patient death and postmortem care. These emotional burdens affect not only their professional roles but also their personal lives. Developing effective emotional support systems and training for nurses can enhance their emotional regulation and improve both their well-being and the quality of care they provide.