The American journal of hospice & palliative care最新文献

Military service demands sacrifice, but no professional challenge prepared me for the deeply personal experience of caring for my father at the end of his life. As an Air Force nurse, I have tended to patients in complex clinical settings, yet becoming both nurse and daughter to my terminally ill father revealed a deeper dimension of caregiving. My father suffered from multiple chronic conditions and declined rapidly after a below-the-knee amputation in 2024. When I returned home on leave, it was clear he was dying. I admitted him to hospice and remained by his side for 40 days, providing total care-bathing, feeding, grooming, and advocating for him-while rediscovering the tenderness of our bond. Through consistent, compassionate caregiving, my father regained strength, dignity, and quality of life. He began eating again, became responsive, and eventually reengaged with his nursing home community. Against expectations, he lived 16 more months filled with joy, connection, and restored purpose. This experience transformed my understanding of nursing by revealing the profound impact of presence, love, and dignity-centered care. Caring for my father illuminated the intersection of professional skill and personal devotion, demonstrating that the heart of nursing extends beyond clinical interventions. It resides in honoring the whole person and offering unwavering compassion in their most vulnerable moments. This narrative reflects on the emotional, ethical, and spiritual lessons learned as I walked my father through his final chapter-an unexpected gift and the greatest honor of my nursing career.

Prognostic machine learning models can help identify patients in need of advance care planning (ACP) conversations. However, additional work is needed to understand which factors guide physicians' comfort with and prioritization of ACP conversations, even after such nudges. In this exploratory secondary analysis of a cluster randomized trial, we examine the relationship between characteristics of internal medicine physicians (eg, training background and practice patterns) and likelihood of ACP conversation following notification by a mortality risk prediction machine learning model.

Latinos face challenges in accessing care for serious illness and lack preparedness for healthcare crises which were exacerbated by the COVID-19 pandemic. Following a social ecological model, this study explored perceptions of advanced care planning (ACP) for Latinos from key informants including community members and health care providers. A total of 12 focus groups including 25 community members and 24 providers were completed in both English and Spanish from April to July of 2020. Using a grounded theory approach and constant comparison, we identified 4 primary themes: underlying vulnerabilities and barriers to ACP, the pandemic context, unique Latino pandemic experience, and urgency to do ACP because of COVID. The Latino experience reflects a complex interplay between 2 macro systems, a unique Latino experience and the pandemic, which included significant communication gaps, isolation, mistrust, and anxiety. The pandemic was an eye-opening experience for many Latinos which has made ACP more relevant as awareness and knowledge of death and dying shifted.

BackgroundThe death of a close relative has profound psychological effects on children. Dialogue between parents and their children before the death of a close relative is important for helping to reduce grief reactions in children. This study aimed to identify the process that facilitates dialogue in Japan within families with dependent children regarding grandparents' home-based end-of-life (EOL) care.MethodsInterviews using the semi-structured interviewing method were conducted between January 2022 and March 2025 with 15 parent-child dyads of families with dependent children who had participated in the home-based EOL care of a grandparent. The participants consisted of children aged 9 to 22 years and their parents (sandwich generation caregivers). The collected data were analyzed using the grounded theory approach.ResultsFour categories-[Efforts made to openly share information], [Common understanding related to lifestyle readjustments], [Collaborative experience of facing the EOL stage of a grandparent], and [Sharing feelings about the approaching death of a grandparent]-and 12 subcategories emerged as the process of facilitating dialogue in families with dependent children related to the home-based EOL care of a grandparent. Early, honest sharing about the grandparent's condition enabled families to readjust routines and build shared understanding, which supported parent-child collaboration and reciprocal emotion-sharing, advancing reflective, anticipatory dialogue of home-based EOL care.ConclusionsDialogue was enabled by four processes (open information sharing, shared understanding of lifestyle readjustments, collaborative caregiving, and sharing emotions about impending death) that provide levers for interprofessional home-care teams supporting families with dependent children during EOL care.

ObjectiveAppropriately using resources is challenging for emergency providers managing hospice patients who desire palliative, rather than curative, care. In the Emergency Department (ED), the goals of such visits may be unclear. Our study examined the chief complaints of hospice patients presenting to the ED and associations with ambulance use, advanced imaging, and hospital admission.MethodsA retrospective review was conducted of 2678 visits by 1281 hospice patients from 2017-2022 in a rural health system in Appalachia. Data collection included demographics, chief complaint, mode of arrival, disposition, and use of advanced imaging. Statistical analyses for associations were conducted using the Chi-Square test and post-hoc analysis with Bonferroni correction.ResultsRespiratory, abdominal, neurologic, and trauma complaints were most common. Ambulance was the mode of arrival for 65.8% and was associated with neurologic concerns and trauma (P < 0.001). Advanced imaging was used in 55.0% of visits and was associated with abdominal concerns, neurologic issues, and trauma (P < 0.001). Admission occurred in 64.4% and was significantly associated (P < 0.001) with neurologic, respiratory, and weakness complaints.ConclusionThe most frequent reasons for ED visits by hospice patients in this study included respiratory, abdominal, neurologic, and trauma complaints. Most ED hospice patients used ambulance services and advanced imaging resources and were admitted. When the goals of the visit are unclear, the ED provider may default to ordering evaluations. Further studies are needed to determine how to best provide goal-concordant support for hospice patients with emergent medical needs.

PurposeWe hypothesized that combining the Palliative Prognostic Index (PPI; maximum score: 15) with the Laboratory Prognostic Score (LPS; maximum score: 10), which is based on blood test parameters, would yield superior prognostic accuracy compared with each score alone. This study aimed to evaluate the prognostic performance of the combined PPI-LPS score and compare it with that of PPI, LPS, and the Palliative Prognostic Score (PaP).MethodsThe PPI-LPS score was calculated as the arithmetic mean of scaled PPI and LPS values: Round[((PPI/1.5) + LPS)/2]. A total of 1061 terminally ill patients with cancer admitted to an acute care hospital with a palliative care unit were included. Prognostic performance was compared among PPI, LPS, PaP, and PPI-LPS in terms of (1) discrimination of 30-, 60-, and 90-day mortality; (2) accuracy of median survival prediction; and (3) categorical survival classification as "days" (0-13 days), "weeks" (14-55 days), or "months" (>55 days).ResultsThe PPI-LPS score demonstrated the highest discriminative ability for 30-, 60-, and 90-day mortality (accuracy: 74%, 80%, and 80%, respectively). It also achieved superior accuracy in predicting median survival (34%) and categorical survival classification (agreement: 61%) compared with PPI, LPS, and PaP.ConclusionThe combined PPI-LPS score provides better prognostic performance than PPI, LPS, or PaP in terminally ill patients with cancer, offering a simple and clinically useful tool for survival estimation in palliative care settings.

BackgroundDespite the demonstrated benefits of hospice care, enrollment among Medicare beneficiaries continues to decline. Previous research has identified multiple barriers, such as a lack of knowledge, a pervasive mistrust of the healthcare system, and a lack of diversity among hospice care providers and sociocultural structures. However, a study on the discourse of hospice enrollment has yet to be done. A thorough analysis of the discourse in hospice enrollment could reveal how social structures and power dynamics contribute to enrollment barriers.ObjectiveTo examine how language and power dynamics shape hospice enrollment decisions among patients, caregivers, and healthcare professionals using a critical discourse analysis framework.MethodsA qualitative critical discourse analysis using Fairclough's three-dimensional framework was conducted in combination with a multiple case study design that included 4 participant groups: patients, their primary family caregivers, hospice registered nurses, and medical directors.FindingsThree dominant discourses were revealed: decision dynamics, help, and beliefs and believe.ConclusionThis study highlights the significant impact of societal constructs, power relations, and personal convictions on hospice enrollment discourse. The findings emphasize the need for patient-centered approaches to hospice enrollment that recognize and engage familial dynamics, societal norms, and personal autonomy.

IntroductionCaring for a child with a rare disease frequently involves making difficult medical decisions with limited disease-specific information. Advance care planning can assist families in articulating their values and treatment preferences. We aimed to describe parental treatment preferences for life-sustaining therapies and reconsideration of treatment preferences among families of children with rare diseases.MethodsWe used inductive content analysis of Respecting Choices Next Steps FAmily CEntered (FACE) pediatric advance care planning interviews and documents to describe parental treatment preferences in a hypothetical clinical scenario.ResultsEighteen parents across 14 interviews completed an advance care plan. In 13 of 14 advance care plans, parents indicated their preference was to continue all treatments. In 10 of 13 of those plans, parents indicated circumstances in which they would reconsider continuing all treatments which we described using 4 themes: having concerns about child's quality of life; after allowing some time to see; having certainty in child's decline; and being at peace.ConclusionsWhile almost all families who completed an advance care plan indicated preference to continue all treatments, most families would reconsider this plan in particular circumstances. Using language expressed by families described here may help providers and families communicate effectively around treatment plans, particularly among the understudied community of children with rare diseases.

BackgroundAlthough early palliative care (PC) has been shown to have numerous benefits for critically ill patients, including those with chronic organ failure, its use remains underutilized in patients with decompensated cirrhosis or end-stage liver disease. In this study, we examine the timing of consultations and their correlation to patient outcomes.ObjectivesEvaluate the association between timing of early vs late inpatient PC consults (within or after 72 h since admission) for patients with decompensated cirrhosis on the days from consult to discharge (DCD), length of stay (LOS), and inpatient deaths. Demographics were obtained from the electronic medical records.MethodsThis retrospective cohort study examined 256 inpatient PC encounters admitted with a diagnosis of end-stage liver disease. Patient information was collected from four hospitals in the U.S. from 1/25/2020 to 8/1/2024. Data was analyzed using descriptive statistics, chi-square test, and t-test.ResultsOf the 256 encounters, 142 (55.5%) were in the early cohort. These patients had a significantly lower DCD when compared to the late cohort (P = 0.0045), as well as a significant reduction in LOS (P = 2.09xe-28). Early cohorts had fewer inpatient deaths (28%) compared to late consults (43%). Although not statistically significant, discharges to hospice and home were more likely to have early PC consult compared to late.ConclusionsEarly PC intervention was associated with significantly improved primary and secondary outcomes including DCD, LOS, and inpatient deaths. Further research is needed to focus PC efforts on this high-risk, underserved population.

BackgroundPalliative Care (SPC) is a guideline-recommended intervention for people with advanced heart failure (aHF). However, there is wide variation in delivery across VA medical centers (VAMCs). This study sought to identify key difference-making features that distinguished VAMCs with high vs lower rates of specialist palliative care (SPC) among this population.MethodsWe conducted a secondary analysis of data from the HEART-PAL cohort, comprising 78 high-complexity VAMCs. We used Coincidence Analysis (CNA) to identify minimally necessary and sufficient conditions associated with high (top 25%) or lower (bottom 75%) rates of SPC. Candidate conditions included structures (ie, full-time equivalents (FTE)) and processes (providing outpatient care), as well as cardiology and facility characteristics.ResultsFacility-averaged rates of SPC across VAMCs were 32.7% (standard deviation (SD) = 16.28). We identified 3 pathways to attaining high rates of SPC: above average total team FTE (top 50%) with high numbers of cardiology-initiated consultations (top 25% of consults) OR above average FTE with high use of outpatient palliative care (top 25% of encounters) OR a lower complexity VAMC with above average use of chaplaincy services (Top 50% of visits). In the negative model, there were 2 pathways to having SPC rates in the bottom 75%: below-average team total FTE, OR the absence of high cardiology-initiated consultations, together with the absence of high outpatient consultations.ConclusionHigh SPC reach among people with aHF was linked to combinations of several modifiable factors related to staffing, cardiology involvement, and outpatient palliative care. These findings provide actionable insights into improving SPC delivery across VAMCs.