The American journal of hospice & palliative care最新文献

{"title":"A Survey of Jewish Attitudes and Experiences Relating to End-of-Life Care and the \"Right to Die\".","authors":"Christopher M Moreman, Ayona Chatterjee","doi":"10.1177/10499091241242817","DOIUrl":"10.1177/10499091241242817","url":null,"abstract":"<p><p>We conducted a survey of Jewish attitudes towards, and experiences with, end-of-life care. Questions fell into three areas: (1) Expectations for Jewish end-of-life care; (2) Experiences with such care; and (3) Attitudes toward the \"right to die.\" Examining denominational differences in belief in, and adherence to, Halakha (Jewish law), we confirm many expectations described in the literature. We find notable nuances in specific areas of need across Jewish denomination, and in terms of acceptance of the withdrawal of life support vs assisted suicide. Care for the nuances of Jewish belief is indicated for effective and satisfying Jewish end-of-life care.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"197-206"},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140327548","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Digitally Recording Comfort Observations in the Last Days of Life.","authors":"Eleanor Stewart, Suzanne Ford-Dunn, Steve Bass, Charlotte Ede, Julie Elliott, Debbie Peters, Rita Caputo, Luis Moreira, Emily Savage, Ollie Minton","doi":"10.1177/10499091241234859","DOIUrl":"10.1177/10499091241234859","url":null,"abstract":"<p><p><b>Background:</b> 37.5% of deaths in our area occur in hospital. There are known high unmet needs of adult patients dying in hospital, this unmet need can be reduced by using an individualised care plan and specialist palliative care review. <b>Intervention:</b> In 2022 UHSussex developed an electronic comfort observation chart and individualised care plan, with a centralised dashboard allowing Palliative Care Teams (SPCT) to view trends, target interventions, and a rolling prospective audit. <b>Results:</b> 3000 patients have had their care supported with electronic comfort observations (e-comfort obs). Over 72% of all deaths in the Trust in the last 3 months have been on e-comfort obs, with 2/3 of all deaths in the first 12 months on e-comfort obs. The average length of time on e-comfort obs is 4 days resulting in 70,000 sets of e-comfort obs recorded since launch. Seven percent of e-comfort obs record moderate or severe symptoms. We have identified benefits to people who are dying, those important to them, ward staff, SPCT and on a systems level. <b>Conclusion:</b> E-comfort obs can be successfully embedded in a large acute Trust. This development should improve quality of end of life care in our hospitals both for individuals and for future patients, through on-going targeted education and intervention. Further work is needed to develop the system further including integrating data from electronic prescribing.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"163-167"},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139914373","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Implementation of the e-IPOS in Home Palliative Cancer Care: A Quasiexperimental Pilot Study.","authors":"Letteria Consolo, Daniele Rusconi, Stella Colombo, Ilaria Basile, Tiziana Campa, Daniele Pezzera, Salvatore Benenati, Augusto Caraceni, Maura Lusignani","doi":"10.1177/10499091241240667","DOIUrl":"10.1177/10499091241240667","url":null,"abstract":"<p><strong>Introduction: </strong>Electronic patient-reported outcome measures (e-PROMs) offer advantages in palliative cancer care, including rapid completion, improved data quality and direct storage, improving clinical decision-making. The electronic Integrated Palliative Care Outcome Scale (e-IPOS) in this context enables thorough self-assessment by patients, enhancing symptom management and self-reflection of their current situation.</p><p><strong>Aim: </strong>To evaluate the feasibility of implementing the e-IPOS in home palliative cancer care.</p><p><strong>Outcomes: </strong>The primary outcomes included the enrollment consent rate, study retention rate, e-IPOS completion rate and response completeness, and the number of clinical assessments and interventions performed during home visits. The secondary outcomes were the number of unscheduled visits and patients' perceived quality of life.</p><p><strong>Design: </strong>A two-group quasiexperimental clinical pilot study. The control group received standard palliative care, the intervention group received standard care along with weekly e-IPOS completion during home visits. Both groups were enrolled for 4 weeks.</p><p><strong>Setting/participants: </strong>Adults with advanced cancer from the home palliative care unit of the Istituto Nazionale dei Tumori of Milan.</p><p><strong>Results: </strong>Twenty-three patients were enrolled (74.19%), and 20 completed the study (drop-out: 13.04%). 82.5% of the expected e-IPOS responses were received, of which 96.9% were fully complete. In the intervention group, the Wilcoxon test showed an increase in identified needs and documented interventions (<i>P</i> < .05) and a decrease in unscheduled visits (<i>P</i> < .05).</p><p><strong>Conclusion: </strong>It is feasible to recruit people via home palliative care for an e-IPOS implementation study. Future fully powered studies should investigate the feasibility and assess patients' perceptions of its use to better understand its clinical benefits.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"186-196"},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11636022/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140178548","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Transitional Changes of Anxiety, Pain and Other Symptoms in Cancer Patients Admitted to a Palliative Care Unit, Evaluated Using the Support Team Assessment Schedule - Japanese Version.","authors":"Tetsuya Ito, Emi Tomizawa, Yuki Yano, Dai Akiyama, Haruko Konishi, Kiyozumi Takei, Masahiro Ikeda, Naoko Takahashi, Fumio Shaku","doi":"10.1177/10499091241254522","DOIUrl":"10.1177/10499091241254522","url":null,"abstract":"<p><p><b>Objective:</b> Association between physical symptoms and psychosocial difficulties of cancer patients has been reported widely. Nevertheless, the effects of pain and other symptom control on anxiety in such patients have not been investigated well. We investigated the association of improvement of pain and other symptoms with patient anxiety, and assessed factors associated with improvement of such symptoms. <b>Methods:</b> Data of patients with advanced cancer admitted to a palliative care unit during August 2018 - June 2022 were analyzed retrospectively. Severity of pain, other symptoms, and anxiety was assessed by the Support Team Assessment Schedule Japanese version (STAS-J) administered at admission and after 2 weeks. Patients' physical data, their Palliative Prognostic Index (PPI) at admission, and their overall survival were collected and recorded. <b>Results:</b> Data of 701 patients were analyzed. Improvement of pain or other symptoms after 2 weeks was not associated with the PPI total score or actual survival (<i>P</i> = .105 and .999). Patients with higher anxiety on admission experienced improvement of pain or other symptoms more frequently (<i>P</i> = .005). Worsening of anxiety was observed less in patients who experienced improvement in pain or other symptoms after 2 weeks (<i>P</i> = .027). <b>Conclusion:</b> Pain or other symptoms of patients with advanced cancer was improved irrespective of the general condition indicated with actual survival and prognosis-predictive factors. These findings suggest the importance of pain and other symptoms' improvement and its important roles in the management of patient psychosocial problems such as anxiety.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"172-177"},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140946770","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient Acceptance of Death and Symptom Control/Quality of Care Among Terminal Cancer Patients Under Inpatient Hospice Care: A Multicenter Cross-Sectional Study.","authors":"Jae Hyuck Lee, Yoo Jeong Lee, So Jung Park, Young Min Park, Chung Woo Lee, Sun Wook Hwang, Min Seok Seo, Sun Hyun Kim, Hong Yup Ahn, In Cheol Hwang","doi":"10.1177/10499091251318738","DOIUrl":"https://doi.org/10.1177/10499091251318738","url":null,"abstract":"<p><strong>Introduction: </strong>Patient attitude to death is associated with outcomes in hospice care settings. This Korean study investigated the association between terminal cancer patient death acceptance and symptom control and quality of care (QoC) as perceived by family caregivers (FCs).</p><p><strong>Methods: </strong>A multicenter cross-sectional survey was conducted in nine inpatient hospice care units, and the data of 108 dyads (terminal cancer patients who responded to the revised Death Attitude Profile and their primary FCs) were analyzed. Dyads were dichotomized into high and low groups by death-acceptance level. Multivariate regression models were used to examine the association between death acceptance and symptom severity/QoC as perceived by FCs.</p><p><strong>Results: </strong>Patients in the high acceptance group were younger, educated to a higher level, more religious, and had better-functioning families. Patients with severe shortness of breath were less likely to accept the inevitability of death. FCs of patients with high acceptance of death were more satisfied with QoC, particularly in domains of individualized care and family relationships. In addition, the positive association between patient acceptance and FC satisfaction with care was significant in dyads of young or female patients, patients with a low education level, and patients not cared for by a spouse.</p><p><strong>Conclusion: </strong>Terminal cancer patient death acceptance is associated with symptom control and FC perceived QoC.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251318738"},"PeriodicalIF":0.0,"publicationDate":"2025-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143071330","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Mapping Interdisciplinary Role Ownership Over Actionable Practices Identified From the Bereaved Family Survey.","authors":"Janice Kishi Chow, Matthew McCaa, Selen Bozkurt, Raziel Cecilia Gamboa, Karl A Lorenz, Karleen F Giannitrapani","doi":"10.1177/10499091251317174","DOIUrl":"https://doi.org/10.1177/10499091251317174","url":null,"abstract":"<p><strong>Purpose: </strong>To determine the feasibility of mapping interdisciplinary role ownership over actionable practices identified from qualitative comments in the Veterans Affairs Bereaved Family Survey (BFS).</p><p><strong>Methods: </strong>We polled two providers from each of 14 disciplines as to whether an actionable practice that improved end-of-life care quality sits within their scope of practice. We grouped practices by having the greatest, middle, and fewest number of disciplines that claimed role ownership and then characterized what roles were shared.</p><p><strong>Major findings: </strong>Medicine, nursing, social work, and occupational therapy claimed role ownership of the greatest number of practices among the 14 disciplines. Chaplaincy and the allied health disciplines had a comparatively more limited range of role ownership of practices. Practices with the greatest number of professionals claiming role ownership were general professional behaviors that do not require specialized training (e.g., being easy to talk to). Practices with the middle number of role ownership required clinical specialization (e.g., offering non-pharmacological interventions to reduce agitation). Practices with the fewest number of disciplines required a narrower skill set (e.g., signing the death certificate in a timely manner) or administrative authority to perform (e.g., providing adequate nursing staff).</p><p><strong>Conclusions: </strong>This project demonstrated the feasibility of mapping BFS actionable practices across disciplines. A larger sample and rigorous statistical analysis are required for application at a health care system level. Understanding role ownership can then guide efforts relating to role ownership and role sharing for end-of-life quality improvement activities.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251317174"},"PeriodicalIF":0.0,"publicationDate":"2025-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143070571","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Dying in a Homophobic Nation: Addressing Healthcare Disparities, Advance Care Planning and Surrogate Decision-Making Challenges for Sexual and Gender Minority Older Adults at End-of-Life.","authors":"Heather Menzer","doi":"10.1177/10499091251317724","DOIUrl":"https://doi.org/10.1177/10499091251317724","url":null,"abstract":"<p><p>Promoting autonomy in medical decision-making is an essential part of palliative care. Therefore, palliative care providers should prioritize supporting the autonomy of sexual and gender minority (SGM) older adults, a community that has historically suffered from healthcare disparities. This support is particularly significant when an illness or injury renders a patient unable to make medical decisions, necessitating the designation of a surrogate decision-maker. Surrogate decision-maker policies vary by state and largely do not represent patients whose support systems are outside of the biological family. This article reviews healthcare disparities experienced by SGM older adults, including higher rates of certain health conditions and barriers to accessing care due to stigma and discrimination. It also highlights the compounded challenges faced by SGM individuals who are part of racial and ethnic minority groups. The lack of inclusive surrogate decision-making policies exacerbates these disparities, as many SGM older adults do not have legally recognized partners or children to act as decision-makers. The absence of inclusive policies for surrogate decision-making results in distress for patients, families, loved ones, and medical providers. This article discusses the importance of advance care planning and completion of advance directives for this population to ensure patient wishes are respected. Palliative providers need to advocate for surrogate decision-maker policies that are more inclusive of families of choice.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251317724"},"PeriodicalIF":0.0,"publicationDate":"2025-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143070569","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Concepts of Suffering at the End of Life Amongst Emergency, Palliative Care and Geriatric Medicine Physicians in Malaysia.","authors":"Annushkha Sinnathamby, Yun Ting Ong, Shu Xian Lim, Aaron Wi Han Hiew, Sing Yee Ng, Joyce Huimin Chee, Mark Kiak Min Tan, Nur Amira Binte Abdul Hamid, Simon Yew Kuang Ong, Lalit Kumar Radha Krishna","doi":"10.1177/10499091251317725","DOIUrl":"https://doi.org/10.1177/10499091251317725","url":null,"abstract":"<p><strong>Background: </strong>Palliative Care, Geriatrics and Emergency physicians are exposed to death, terminally ill patients and distress of patients and their families. As physicians bear witness to patients' suffering, they are vulnerable to the costs of caring-the emotional distress associated with providing compassionate and empathetic care to patients. If left unattended, this may culminate in burnout and compromise professional identity. This study aims to provide a better understanding of suffering across various practice settings and specialties to guide the design of support frameworks for physicians and their patients.</p><p><strong>Methods: </strong>From August 2023 to September 2024, semi-structured interviews were conducted with sixteen Palliative Care, 12 Geriatrics and 13 Emergency physicians from various hospitals in Malaysia. Interview transcripts were analyzed using both inductive and deductive qualitative analyses.</p><p><strong>Results: </strong>Data analysis revealed three key domains: (1) living and dying well, (2) definition of suffering, and (3) impact of patient suffering on physicians.</p><p><strong>Conclusion: </strong>Physicians' concepts of a good life and death frame their notions of suffering beyond the antithesis of a good life. Suffering is found to be distress at a loss of control, independence and dignity, alongside the presence of physical, emotional and existential distress. Witnessing patient suffering predisposes to physician suffering as they question their goals and roles in patient care. Our findings underscore the need for host organizations, hospitals and clinical departments to invest more in the care of their physicians. We believe these findings ought to be applicable to many resource-limited nations and other health care professionals beyond Malaysian shores.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251317725"},"PeriodicalIF":0.0,"publicationDate":"2025-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143070562","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Differences in Inpatient Palliative Care Consultation During the Terminal Admission for Pediatric Neuro-Oncology Patients.","authors":"Chinwe S Udemgba, Brett K Palama, Wendy Darlington, K Sarah Hoehn","doi":"10.1177/10499091251316570","DOIUrl":"https://doi.org/10.1177/10499091251316570","url":null,"abstract":"<p><p>Pediatric neuro-oncology patients have one of the highest mortality rates among all children with cancer. Our study examines the potential relationship between palliative care consultation and intensity of in-hospital care and determines if racial and ethnic differences are associated with palliative care consultations during their terminal admission. Retrospective observational study using the Pediatric Health Information System (PHIS) database with data from U.S. children's hospitals. PHIS was queried for patients under 18 years of age who received a diagnosis of brain tumor and had their terminal admission between January 1, 2017 and December 31, 2021. Of the 567 patients who fit the inclusion criteria, 359 (63%) patients had an inpatient palliative care consultation during their terminal hospital stay. There were no statistically significant differences seen when comparing palliative care consultation rates among racial groups. When comparing the ethnicity variables, patients in the Hispanic group had approximately a 10% higher rate of palliative care consultations than their non-Hispanic counterpart. Patients with palliative care consultations had a lower percentage of PICU admission (64.9 vs 83.2), mechanical ventilation (51.0 vs 76.0), and TPN use (18.1 vs 25.5) despite having similar lengths of stay. Pediatric neuro-oncology patients who received a palliative care consultation during their terminal hospital stay had lower intensity care (lower rates PICU admission, mechanical ventilation use, and TPN use) despite having similar lengths of stay. This may reflect the enhanced decision-making support for the patients and their families so that they may consider all options. Children facing a terminal illness and their families deserve access to optimal supportive services. This study highlights the importance of integrating palliative care in hospital admissions of terminally ill children with neuro-oncological diagnoses.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251316570"},"PeriodicalIF":0.0,"publicationDate":"2025-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143070564","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of the Home Hospice Nursing Care Scale to Support End-of-Life Patients With Cancer and Evaluation of its Reliability and Validity.","authors":"Saori Yoshioka, Shigemi Murakami, Reiko Oshita","doi":"10.1177/10499091251316884","DOIUrl":"https://doi.org/10.1177/10499091251316884","url":null,"abstract":"<p><p>This study aimed to develop the \"Home Hospice Nursing Care Scale\" to assess the care provided by visiting nurses to patients with end-stage cancer and evaluate its reliability and validity. A draft of the scale was created based on a descriptive survey conducted among oncology nurse specialists and certified oncology nurses working as home-visit nurses. A questionnaire survey was administered to 1,770 home-visit nurses working at 296 functionally strengthening home-visit nursing establishments. A total of 436 valid responses were obtained (valid response rate: 24.6%). Exploratory factor analysis identified 5 factors comprising 40 items: care that supports the values of the patient and their family members, partnership involving the patient and their family members to maintain home care, care that allows for living with loved ones until end of life, care that supports the daily lives of family caregivers, and care that reconciles the feelings of those involved. Confirmatory factor analysis demonstrated that the goodness-of-fit indices of the model were as follows: GFI = 0.846, AGFI = 0.828, CFI = 0.915, and RMSEA = 0.050. Cronbach's α coefficients ranged from 0.77 to 0.93. Criterion-related validity was verified by the Healthcare Professionals' Attitudes towards Terminal Home Care Scale and Difficulties with Home Palliative Cancer Care Scale. The reliability and validity of the scale was verified, which demonstrates its utility. Future challenges include analyzing factors related to home hospice nursing care and developing an educational program based on the future study. Key words: home hospice, end-of-life, cancer, nursing, scale development, reliability, validity.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251316884"},"PeriodicalIF":0.0,"publicationDate":"2025-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143061849","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}