The American journal of hospice & palliative care最新文献

ObjectivesThis study aims to evaluate the feasibility and acceptability of an online coach-guided yogic breathing exercise (YBE) program on improving quality of life (QoL) in persons with amyotrophic lateral sclerosis (PwALS).MethodsA waitlist pilot randomized controlled trial with a post-program individual qualitative interview was employed. Thirteen adults with ALS participated in the YBE program, with 7 in the YBE group and 6 in the waitlist group. The program consisted of twelve 30-min online YBE sessions in which each participant received one-on-one coaching from a certified yoga therapist over six consecutive weeks. ALS Specific Quality of Life-Revised (ALSSQOL-R) was the outcome measure.ResultsAll but 2 participants in the YBE training group completed the 12 sessions, with an overall attendance rate of >97%. Compared to the waitlist group using the Mann-Whitney U test, the YBE group showed significant improvement in the change scores of the physical symptoms and intimacy domains of the ALSQOL-R at post-test. No significant differences in the change scores between the YBE and waitlist groups in the total score and other domains of the ALSQOL-R were observed. Thematic analysis of participants' interview about their experiences with the program revealed two themes: sense of control over breathing and emotional regulation through relaxation.ConclusionDespite the small sample size, the high attendance rate and positive feedback indicate that the YBE program is feasible and acceptable to PwALS. The YBE program demonstrated significant QoL benefits for PwALS. Participants reported enhanced control over their breathing and better emotional regulation.

ObjectivesExistential concerns are inherent in serious illness and at the end of life, yet communication to address such concerns can be challenging. This study explored multidisciplinary oncology clinicians' experiences navigating existential communication with patients and families, as well as what makes existential communication meaningful and challenging.MethodsThis qualitative study analyzed responses to open-ended survey questions collected from N = 83 participants (multidisciplinary oncology clinicians, including nurses, social workers, and chaplains) who participated in a communication training course. Data were analyzed using thematic analysis.ResultsThemes across clinicians' experiences of existential communication with patients and families included existential questions; guilt/regret; fears about the future; grief; preparing for death; values and goals of care; spiritual concerns; and letting go. Meaningful experiences included bearing witness; providing emotional support and information; easing suffering; learning and growing; and the honor of accompanying patients and families through the end of life. Challenges included discomfort when talking about death; facing denial; being unable to "fix it"; resistance to palliative care among oncology team members, patients, and families; fear of saying the wrong thing; navigating conflicting values; responding to spiritual concerns; barriers to inclusive, high-quality care; and struggling with emotions.ConclusionsExistential communication is a vital yet challenging part of oncology care. Clinicians find deep meaning in this work but face emotional and systemic barriers. Findings highlight the need for training, reflection, and institutional support to help clinicians engage in existential communication with patients and families near the end of life.

BackgroundPalliative care (PC) has the potential to alleviate symptom burden and enhance quality of life, yet use of PC among American Indians lags significantly behind whites.MethodsThis randomized clinical trial employed a randomized, complete block, posttest-only control group design to evaluate the efficacy of a culture-centric narrative video message to increase knowledge of and communication about PC among AI adults residing in three Great Plains Reservations compared to a general PC message or no message. Measures included participants' knowledge of and intentions to discuss PC using a posttest survey.ResultsN = 320 individuals completed the survey. Both the culture-centric and general messages demonstrated statistically significant results for increasing participants' PC knowledge compared to the no message group. The culture-centric message participants had greater odds of feeling the emotions and agreeing with the characters compared to the general message; however, there were no differences noted in intentions to discuss PC.ConclusionsThis study demonstrates the importance of messaging to improve PC knowledge and reduce misperceptions among populations with a history of mistrust of healthcare institutions. Embedding the culture's values and ways of understanding serious illness care can serve to break down barriers in PC acceptance and provide opportunities for improving quality of life for AIs with serious illness.

Introduction: Measuring palliative care needs of patients with multiple complex illnesses and their family, is essential for providing quality clinical care. The integrated palliative care outcome scale (IPOS) is a scientifically verified measure of patients' physical, emotional symptoms, and their palliative care communication and practical needs. The patients in this study require palliative care due to both their end-of-life heart failure (HF) and vascular dementia. Purpose: The purposes are to describe and compare home palliative care needs measured by the family caregivers (N = 20) and patients (N = 20) IPOS scores and to examine whether the patient IPOS total score can predict patient HF health status and caregiving burden scores. Methods: This study uses explanatory research design with rigorous methods for obtaining information from multiple sources. Descriptive, Cohen's Kappa (k) statistics comparing patient and caregiver IPOS scores and regression analyses to examine the patient IPOS scores impact on patient HF health status and caregiving burden scores were used. Results: There was significant agreement between patient and caregiver ratings on 16 out of 17 IPOS items (k = .34 to .80). Regression analyses found that the patient IPOS total score significantly predicted patients' HF health status (β = -.50, P < .05), and caregiving burden scores (β = .57, P < .01). Conclusion: Patients' and their caregivers' IPOS scores agreement indicates palliative care needs can be consistently identified. The patient IPOS total scores can predict patients' HF health status and caregiving burden. These measures provide information directly applicable for health professionals guiding palliative home care.

ContextHealth inequities in Hispanic populations require community-engaged solutions. Engaging Hispanic communities in research related to advance care planning (ACP) is critical to inform the development and evaluation of culturally appropriate interventions.ObjectivesTo understand how to best adapt and implement Spanish-language ACP interventions in Hispanic communities across the US.MethodsWe apply the Framework for Reporting Adaptations and Modifications to Evidence-based Interventions (FRAME) to detail experiences during implementation of the national Project Talk Trial (PTT) that delivers two ACP interventions using a community-based delivery model. Semi-structured interviews with Hispanic community event hosts and research assistants (RAs) were conducted to explore challenges and solutions to implementation. Thematic analysis was applied to transcripts.ResultsThree themes from the community hosts (n = 9) were: (1) certified translation professional services were inadequate to successfully adapt interventions for diverse Hispanic communities; (2) a lack of Spanish-speaking RAs undermined the intention to address health inequities in the research; and (3) cultural norms, such as RSVP systems, differ in Hispanic populations. Themes from the RA interviews (n = 7) include: (1) discomfort with being unable to communicate appropriately with the research participants; and (2) improved connection and event flow when bilingual RAs attended events.ConclusionOur work highlights the value of a strong community-based delivery model, attention to local dialects and cultural nuances, the need for Spanish-speaking workforce and for balancing fidelity across national sites with adaptability when conducting rigorous research.Trial registeredThe trial titled "Engaging underserved communities in end-of-life conversations: a cluster, randomized controlled trial" is registered at clinicaltrials.gov [NCT04612738].

Background: Advanced cancer severely impacts the lives of patients as well as their caregivers and loved ones. The burden of the caregiver role often results in significant distress, especially near the end of life. Identifying ways to support patients and caregivers is an important focus of palliative care.

Objectives: To report two cases depicting the negative impact of caregiver distress on patient care and end-of-life decision-making, requiring the collaboration of an interdisciplinary team. The cases outline interdisciplinary approaches to patient and caregiver support during this transition.

Conclusions: Medical facilities providing cancer care should have structures and processes capable of assessing and managing caregiver distress. Interdisciplinary teams are needed to identify a process of supporting caregivers to minimize negative impacts of emotional dysregulation on patients, their caregivers, and staff.

ObjectiveA recently published study concerning variables associated with survival longer than one year in palliative care included several types of cancer. A secondary analysis limited to patients with colorectal cancer was performed to analyze a more homogeneous group of patients.MethodsPatients were identified through electronic records from 2012 to December 2018. All patients were over 18 years old and deceased. Cases were defined as patients who survived ≥1 year after being admitted to the palliative care service (PCS), while controls were those who had survived ≤6 months.ResultsThe study includes 33 patients as cases and 119 as controls. 82 (54%) were male, and the median age was 78.5 years (49 to 95). In the univariable analysis, the variables associated with a low probability of living ≥1 year were an ECOG performance status ≥2, liver metastases, and pain. The variables associated with a survival ≥1 year were the neutrophil count ≤5.66 x 10⁹/L and a neutrophil/lymphocyte ratio ≤3.59. In the multivariable analysis, only pain and liver metastases were associated with a low probability, and the neutrophil/lymphocyte ratio ≤3.59 with a high likelihood of living one year or more.ConclusionThe data of this study suggests that in colorectal cancer patients admitted to a PCS, the presence of pain, liver metastases, and a high neutrophil/lymphocyte ratio negatively impact the probability of living ≥1 year.

BackgroundHealth systems increasingly recognize the value of community-based palliative care but there is considerable variability in how such services are delivered. As part of a quality improvement initiative to enhance community-based palliative care, we aimed to characterize publicly accessible services for persons suffering from serious illness in a diverse, large North American city in Canada. We assessed the degree to which structures and processes followed best-practice recommendations of high-quality community-based palliative care.MethodologyWe conducted a cross-sectional survey with healthcare workers to assess structures and processes related to community-based palliative care team composition, care access and provision, care continuity, and care transitions.ResultsCommunity-based palliative care teams in our sample adhered to many best-practice recommendations, such as working in multi-disciplinary teams, providing 24/7 access, and fostering care transitions to and from inpatient palliative care settings. However, access to community-based palliative care was not uniform, and considerable variability existed in prognostic admission criteria. We also identified gaps in psycho-spiritual and personal care support capacity. Specialized, dedicated psycho-spiritual, and personal care support services were missing from more than 75% of community-based palliative care teams.ConclusionsA survey of structures and processes in community-based palliative care teams revealed variability in service organization and care processes. Many services lacked psycho-spiritual and personal care support. Our findings may be representative of similar structural issues elsewhere and suggest the need for broader efforts to understand the system-level factors that shape community-based palliative care service structures and processes.

Introduction: This study aimed to evaluate the impact of a Pain and Palliative Care elective didactic course on enhancing clinical reasoning skills among Doctor of Pharmacy (PharmD) students using the Script Concordance Test (SCT). As palliative care education becomes increasingly vital in pharmacy training, assessing its effectiveness is essential for curriculum development. Methods: A 5-year prospective study was conducted between 2018 and 2023 at a single academic institution. The elective course was offered six times, covering various palliative care topics such as opioid management, procedural pain, and end-of-life care. A total of 130 third year PharmD candidate students, completed pre- and post-course SCT assessments. The SCT, administered via an online platform, was used to measure clinical reasoning in ambiguous scenarios, with scores compared to a panel of expert responses. Results: The study found a statistically significant improvement in SCT scores from pre- to post-course assessments (P = 0.04), with a mean score increase of 0.09. The 5-year cohort's average score (0.56) outperformed a previous multisite cohort (0.50), although the difference was not statistically significant. Item analysis highlighted areas where students struggled, such as bowel obstruction and CYP interactions, indicating potential areas for curriculum enhancement. Conclusion: This study demonstrates the effectiveness of a targeted palliative care elective in improving clinical reasoning skills among pharmacy students. The findings suggest the need for ongoing curriculum refinement to address specific areas of difficulty and ensure comprehensive palliative care education.

PurposeIn the US, nearly one-third of skilled home health (HH) patients and nearly one-half of hospice patients live with Alzheimer's disease and related dementias (ADRD). Hispanic older adults are more likely to live with ADRD than white non-Hispanic older adults. Persons with ADRD, compared to their counterparts without ADRD, have a prolonged trajectory of decline and experience multiple care transitions between health care settings, bringing risks for poor outcomes. Little is known about patients transitioning between skilled HH and hospice. We aimed to determine if there were demographic and/or diagnostic variables associated with the frequency of transitions between skilled HH and hospice.DesignIn a cross-sectional study, we used Medicare claims data from 2020 and descriptive statistics including Chi-Square to determine demographic and diagnostic differences in frequency of care transitions between skilled HH and hospice for older adults with ADRD.FindingsIn N = 272,323 hospice episodes, Hispanic older adult beneficiaries with ADRD and co-occurring cardiovascular disease (CVD) had significantly higher rates of care transitions from hospice to skilled HH (P = 0.037) than other racial and ethnic groups with both diagnoses.ConclusionsOur findings provide evidence of disparities in care transitions from hospice to skilled HH for Hispanic older adults living with ADRD and CVD. Multiple factors may impact this result: Hospice low quality scores, insufficient advance care planning and understanding of hospice philosophy, and policies affecting eligibility. Implications include policy change and greater coordination of care for older adults with co-occurring ADRD and CVD, with attention to health equity.