Journal of palliative medicine最新文献

Systemic autoimmune rheumatic diseases (SARDs) consist of a broad range of immune-mediated multisystem diseases. They are chronic, incurable illnesses that often present in early to mid-life and can be associated with a high symptom burden, disability, and early mortality. Treatment guidelines for similar chronic, life-limiting conditions with uncertain disease courses now recommend palliative care (PC) assessment at the time of diagnosis. Recently, the first rheumatology treatment guidelines to recommend PC were also published. Integration of PC into rheumatology offers an opportunity to improve quality of life and deliver better goal-concordant care for people with severe rheumatic disease. This article provides 10 tips to guide PC clinicians when caring for people with rheumatic diseases.

Background: The pediatric literature describes reliance on community-based palliative and hospice organizations in extending the reach of care for children. Objective: To provide an updated post-pandemic snapshot of pediatric palliative and hospice services and staffing offered by community-based organizations in the United States. Design and Subjects: This study utilized an online survey distributed to organizational members of the National Alliance for Care at Home in the United States. Results: A total of 295 palliative and hospice organizations from 50 states and Washington, DC, responded. Half (49%) of organizations reported increasing the number of pediatric patients accepted into their care over the past five years. A total of 6% of responding programs newly started to accept pediatric patients between 2020 and the current survey completion. Programs are less likely to include perinatal (61%) patients compared to infants through young adults (94%). Trauma increased as a reason for pediatric enrollment. Nonmetro geographies are less likely to provide services for children. The pediatric palliative average annual census was 271, and the pediatric hospice average annual census was 74. The pediatric patient's average length of stay for palliative care was 154 days and for hospice was 96 days. Medicaid (47%) is the most common form of reimbursement. Lack of trained personnel, low referrals, and funding were depicted as the most common barriers. Conclusions: Children remain underrepresented in the extension of care offered through community-based hospice organizations, with the gap widening in nonmetro settings. Further research into training, staffing, and funding models may improve care reach.

Suicide by patients can cause significant distress for the palliative care team. This includes feelings of guilt and self-blame which affect both staff morale and mental well-being, which if left unaddressed, can eventually lead to burnout. We report the case of a patient suicide and how our organization implemented a framework to guide and support staff through this process. The HEAL framework comprises 4 components: honoring the loss of the patient, encouraging self-care and organizational support, affirming the individual and team's sense of meaning and purpose, and learning lessons from the patient's suicide.

Introduction: Interhospital transfer (IHT) can be lifesaving but is associated with longer length of stay, higher costs, and increased inpatient mortality. Little is known about communication and decision-making processes surrounding IHT. Methods: We conducted semi-structured interviews with the surrogate decision-makers of 32 patients who died after IHT, examining perspectives on end-of-life preparations and their impact on the transfer decision-making process and surrogate coping. Results: Several themes emerged surrounding the role of end-of-life planning in IHT: (1) although end-of-life (EOL) planning practices were heterogeneous, respondents reported limited direct insight into transfer preferences; (2) surrogates extrapolated from information about other EOL care preferences to guide transfer decision-making; and (3) serious illness communication and advance care planning (ACP) played a role in surrogate coping. Conclusion: IHT is often not treated as a preference-sensitive decision; however, there is likely a role for improvements in ACP conversations to guide patients and families through goal-concordant transfer decision-making.

Background: Access to specialized palliative care (SPC) has improved but continues to be a concern. For-profit (FP) hospitals are less likely to offer SPC than hospitals with other ownership types, though the reason for this is not well understood. Objectives: The primary objective was to introduce a new measure of access, percent of patients admitted to hospitals offering SPC, and to estimate SPC access for each state. Secondary objectives were to examine availability of other low revenue services as well as high-revenue services, and to explore availability of SPC within multihospital systems. Design: The 2021 American Hospital Association Annual Survey provided data on hospital characteristics and service offerings. These data were used to estimate access measures. Correlations between ownership type and service offering were estimated using logistic regression. Subjects: Acute care hospitals in the United States. Results: Nationally 81% of hospitalized patients were admitted to hospitals offering SPC. Only 48% of hospitals offered these services. Not-for-profit and public hospitals had higher adjusted odds of offering SPC and other low-revenue, high-value services (adjusted odds ratios ranged from 1.33 to 4.50). Their odds of offering most high-revenue, low-value services were lower or did not have statistically significant differences. Multihospital FP systems varied in the percent of their hospitals offering SPC. Conclusions: The majority of hospitalized patients have access to SPC, even in many states where less than 50% of hospitals offer it. Financial characteristics of SPC contribute to its low uptake by for-profit hospitals. Multihospital systems differ in their adoption of SPC.

Background: Children who lose a sibling often receive inadequate attention, leading to lasting psychological and emotional challenges. Health care providers recognize the importance of comprehensive bereavement support but may lack knowledge for effective delivery. Aim: This study sought to analyze and synthesize primary research on children bereaved by a sibling to gain insight into their actual grieving experiences. Methods: A systematic review of qualitative studies was conducted following the Joanna Briggs Institute (JBI) methodology. The review protocol was registered on PROSPERO (CRD42022289604). Electronic databases including MEDLINE, CINAHL, PsycInfo, Scopus, and Igaku Chuo Zasshi were searched from inception to April 15, 2024. Critical appraisal was performed using the JBI Critical Appraisal Checklist for Qualitative Research. Results: Twenty-three articles met inclusion criteria, synthesizing experiences of 466 children. Four synthesized findings were generated: Children recognized internal and external changes in themselves after losing their siblings; children found it hard to believe their sibling had died, experienced feelings of loss and fear of death, and sometimes hid their emotions; various types of grief work allowed children to find their place after the loss, but ineffective grief work led to prolonged grief; and children's relationships with others were either strengthened or weakened depending on others' understanding and reactions to the loss. Conclusions: This review highlights the complex nature of sibling grief in children. It emphasizes the importance of recognizing children's unique grief experiences, facilitating effective grief work, and providing appropriate support from family, friends, and health care professionals. The findings suggest a need for tailored grief support programs for children who have lost siblings, considering their cultural backgrounds. However, the low ConQual score of the synthesized findings indicates that recommendations should be considered with caution.

Background: The imperative to integrate primary palliative care (PPC) into primary health care provides a compelling rationale for U.S.-based educational initiatives to prepare frontline health providers to deliver PPC across settings. Physicians, advanced practice registered nurses (APRNs), and physician assistants (PAs) are positioned as autonomous decision-makers. Therefore, their education should include PPC fundamentals critical to high-quality serious illness care. Objective: To conduct an integrative review of best teaching practices in PPC education for medical, APRN, and PA students preparing for frontline provider roles in the United States. Methods: A systematic search of peer-reviewed literature published between 2011 and 2025 was conducted. Studies describing PPC educational interventions or curricula for medical, APRN, or PA students were included. Data extraction and thematic synthesis were guided by the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care and Kirkpatrick's model of assessing educational outcomes. Results: A total of 1691 articles were identified. After screening 1256 titles and abstracts and reviewing 292 full-text articles, 64 studies met inclusion criteria. Most studies focused on medical students (94%), with fewer addressing APRN (13%), PA (2%), or interprofessional cohorts (16%). A majority were descriptive or nonempirical (88%) and focused on structural and process-oriented components of PPC education (89%). Eighty-four percent employed multifaceted teaching approaches. Five consensus themes emerged as best practices: (1) multifaceted teaching strategies, (2) interprofessional education, (3) reflective and/or humanities-based experiences, (4) early and repeated exposure, and (5) availability of teaching resources. Conclusion: While the literature supports improvements in learners' knowledge, skills, and attitudes, few studies evaluate higher-level outcomes such as long-term skill retention or impact on patient and system-level care. This review provides lessons learned and evidence-informed recommendations to guide curricular development and identifies key gaps to inform future educational research to better prepare frontline health professions students in delivering high-quality PPC.