Journal of palliative medicine最新文献

{"title":"\"<i>Why Are we Giving up on my Brother?\"</i>-The Unmet Needs of the Adolescent Facing End-of-Life Care in a Sibling.","authors":"Annushkha Sinnathamby, Le Ye Lee, Grace M C Ng","doi":"10.1089/jpm.2023.0395","DOIUrl":"10.1089/jpm.2023.0395","url":null,"abstract":"<p><p>Adolescence is a challenging time at baseline, and a sibling receiving end-of-life care can alter an adolescent's life irrevocably. It is imperative for the medical team to understand the unique needs and perspectives of such an adolescent sibling. This in turn facilitates the anticipation of an adolescent's grief response, and allows for parents to be appropriately guided. However, more can be done to evaluate the needs of adolescent siblings and improve their support. This can be through establishing a validated needs-based questionnaire, empowering families and the multidisciplinary team to engage siblings, and diverting resources toward culturally sensitive support groups for siblings with critical illness. A framework to involve key players in the adolescent's circle is presented.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1562-1567"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141437049","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Interhospital Transfer: A New Frontier for Palliative Care.","authors":"Rachel A Hadler, Rebecca A Aslakson, Laura C Hanson, Stephanie Mueller, Camille E Vaughan, Dio Kavalieratos","doi":"10.1089/jpm.2024.0330","DOIUrl":"10.1089/jpm.2024.0330","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1437-1438"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142046833","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Scoping Review on Transitions in the Context of Pediatric Palliative Care.","authors":"Elaine Champagne, Josée Chénard, Chantale Simard, Marco Bonanno, Aline Bogossian, Véronique Roberge, Marianne Olivier-d'Avignon, Deborah Ummel, Gabrielle Fortin, Frédéric Bergeron, Frédérique Bonenfant","doi":"10.1089/jpm.2023.0673","DOIUrl":"10.1089/jpm.2023.0673","url":null,"abstract":"<p><p><b><i>Background:</i></b> Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be bewildering and highly anxiety-inducing. However, clinical observations seem to point to a more heterogenous care offer, including a lack or discontinuity of services, at the expense of their quality of life. <b><i>Objective:</i></b> This paper aims to establish a portrait of the existing literature and identify research gaps on the multiple transitions experienced by this population. <b><i>Design:</i></b> A scoping review is provided, following a PRISMA protocol. MEDLINE, PubMed and CINAHL were consulted. The search strategy is based on three key concepts: (1) palliative care/complex condition, (2) child/adolescent, and (3) transition. Articles were screened with the help of Covidence. <b><i>Results:</i></b> A total of 72 articles are included for analysis. The aimed population is either identified by age group or by medical status. Respondents are most often parents rather than the children themselves. Transitions include: reaching adulthood, changes in care environment, changes in medical status, and school integration. <b><i>Conclusion:</i></b> The discussion notices a definitional murkiness about transitions and highlights the fact that the multifaceted and complex nature of transition over time is largely ignored. New research should involve a diversity of participants and include children's voices. Recommendations include clearer concept definitions, health care policies that adopt an ecosystemic approach, and professional training in the systemic family approach in palliative care.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1541-1554"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141759385","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"In this Issue.","authors":"","doi":"10.1089/jpm.2024.0372","DOIUrl":"https://doi.org/10.1089/jpm.2024.0372","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":"27 11","pages":"1431"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142681982","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Sharing His Warmth.","authors":"Rob Ruff","doi":"10.1089/jpm.2024.0345","DOIUrl":"10.1089/jpm.2024.0345","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1558"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142348595","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Outpatient Pediatric Palliative Care Development: Guidance on Building Sustainable Programs.","authors":"Casie James, Suraj Sarvode Mothi, Elissa G Miller, Erica C Kaye, Alexis Morvant, Caroline Stafford, Ashley K Autrey","doi":"10.1089/jpm.2024.0148","DOIUrl":"10.1089/jpm.2024.0148","url":null,"abstract":"<p><p><b><i>Context:</i></b> As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. <b><i>Objectives:</i></b> We asked outpatient PPC (OPPC) program leaders in the United States about clinic development experiences to gather advice for growing programs. <b><i>Methods:</i></b> As part of a larger OPPC study, 48 freestanding children's hospitals with inpatient PPC programs were invited to complete a survey on OPPC. Self-selected participants were sent a follow-up survey soliciting free-text responses about development experiences. Quantitative data were analyzed with descriptive statistics. Qualitative data underwent inductive content analysis. <b><i>Results:</i></b> Thirty-six hospitals completed the initial survey, and 28 (78%) reported practicing clinic-based OPPC. Twenty-two of 28 completed program development questions. More than half (12/22, 55%) recommended a minimum total billable full-time equivalent (FTE) ≥3 before expanding into the outpatient setting. About two-thirds (14/22, 64%) suggested a minimum billable FTE ≥4 for 24/7 coverage. Half (50%) reported that their program grew from subspecialty clinics, most frequently hematology-oncology (10/11, 91%). Half (50%) placed initial limits on referrals, with many restricting schedule availability (7/11, 64%). Six of 12 participants (50%) willing to share more about their development experience completed a follow-up survey, from which three themes emerged: program logistics, expectations and boundaries, and establishing role and workflow. Participants focused advice on slow programmatic growth to optimize sustainability. <b><i>Conclusion:</i></b> Program leaders offer tangible guidance informed by their OPPC development experience. Future work is needed to leverage this advice within institutions to promote resilient and sustainable PPC growth.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1489-1496"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142017809","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Loneliness in Seriously Ill Nursing Home Residents During the COVID-19 Pandemic.","authors":"Vyjeyanthi S Periyakoil, Margery Bangoy, Dulce Rodriguez, Jon Fuller, Eric Neri, Helena Kraemer","doi":"10.1089/jpm.2024.0125","DOIUrl":"10.1089/jpm.2024.0125","url":null,"abstract":"<p><p><b><i>Background:</i></b> Loneliness and social isolation coexist, making it difficult to study each separately. The COVID-19 lockdown provided an unprecedented and ethically viable opportunity to study loneliness in seriously ill nursing home residents under uniformly imposed social isolation conditions. <b><i>Objective:</i></b> To understand the phenomenon of loneliness of the seriously ill nursing home patients under a uniform social isolation condition imposed by the COVID-19 pandemic lockdown. <b><i>Design:</i></b> Cross-sectional, semi-structured interviews were tape-recorded, transcribed verbatim, and analyzed qualitatively using an inductive thematic analysis. The University of California, Los Angeles (UCLA) Three-Item Loneliness Scale was used to measure loneliness and any relationships between self-reported loneliness and isolation were elucidated. <b><i>Setting/Participants:</i></b> Thirty seriously ill nursing home residents living in complete social isolation imposed by the COVID-19 pandemic lockdown. <b><i>Results:</i></b> Thematic analysis identified four key themes: (1) Diverse perceptions about the impact of the COVID-19 lockdown, (2) regret over the missed opportunities for spending time with friends and family, (3) using electronic communication to maintain connections with loved ones, and (4) the impact of nursing home staff. In total, 50% of the participants reported feeling socially isolated, 60% patients reported loneliness, and 70% reported being adversely impacted by the lockdown. Patients who felt socially isolated also reported experiencing loneliness (Kendall's Tau = 0.61, 95% confidence interval [CI] = 0.30, 0.89, <i>p</i> < 0.01, large effect size). Persons from communities of color had higher median loneliness scores compared to Non-Hispanic Whites. Participants in the last year of life also reported higher levels of loneliness. <b><i>Conclusion:</i></b> A study of loneliness under uniform social isolation conditions in seriously ill nursing home patients showed a high prevalence of loneliness and a strong correlation between self-reported loneliness and social isolation, especially in persons from minority communities and those in the last year of life. In-person support provided by nursing home staff and virtual support from family was helpful to patients.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1467-1474"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142004402","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Always and Forever.","authors":"Jennifer Eitingon","doi":"10.1089/jpm.2024.0202","DOIUrl":"10.1089/jpm.2024.0202","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1568"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141446404","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Tele-Assisted Home-Based Palliative Care Reduces Health Care Costs for Terminal Cancer Patients: Real-World Evidence From a Regional Hospital in Taiwan.","authors":"Chang-Sheng Jang, Jung-Der Wang, Hung-Pin Hou, Wu-Wei Lai, Li-Jung Elizabeth Ku","doi":"10.1089/jpm.2023.0697","DOIUrl":"10.1089/jpm.2023.0697","url":null,"abstract":"<p><p><b><i>Background:</i></b> Tele-assisted home-based palliative care (THPC) usually fulfills the desire of terminal patients to pass away at home. The overall costs of such a service deserve evaluation. <b><i>Objectives:</i></b> This study aims to determine health care utilization and costs for cancer patients at the end of life, stratified by THPC service. <b><i>Design:</i></b> Patients who received THPC were matched 1:1 based on age, gender, year of death, and propensity score with those who did not receive THPC. <b><i>Setting/Subjects:</i></b> A total of 773 cancer patients passed away in a regional hospital in Taiwan during the period of 2012-2020, of which 293 received THPC. <b><i>Measurements:</i></b> We measured the rates and costs of outpatient clinic visits, emergency department (ED) visits, hospitalizations, and intensive care unit (ICU) admissions during the last week, the last two weeks and the last month before death. In addition, we estimated the driving times and expenses required for transportation from each cancer patient's home to the hospital using Google Maps. National Health Insurance (NHI) reimbursements and out-of-pocket expenses were also calculated. <b><i>Results:</i></b> In comparison with patients without THPC, those who received THPC had a 50% lower likelihood of visiting the ED or being hospitalized, a more than 90% reduced chance of ICU admission, but were four times more likely to obtain their medicines from outpatient clinics. THPC patients had similar out-of-pocket expenditures, approximately half of the NHI costs, and lower rates and costs for ambulance transportation to the ED. <b><i>Conclusions:</i></b> THPC reduced health care costs for terminal cancer patients in the last week, the last two weeks, and the last month before death, while also increasing the likelihood of patients being able to rest and pass away at home.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1450-1458"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141878922","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"If EQ-5D-5L <i>Mobility Dimension</i> Ratings Are High, Is Life-Space Assessment a Clinically Sensible Next Step? Data from a Population Survey.","authors":"Slavica Kochovska, Sungwon Chang, Jane L Phillips, David C Currow","doi":"10.1089/jpm.2024.0193","DOIUrl":"10.1089/jpm.2024.0193","url":null,"abstract":"<p><p><b><i>Background:</i></b> Impaired health states can limit a person's mobility, often progressively for people with life-limiting illnesses. Quantifying mobility changes is crucial for individual clinical care and service planning. <b><i>Objective:</i></b> To explore any correlation between EQ-5D-5L's <i>mobility dimension</i> ratings and Life-Space Assessment (LSA) from a population sample. <b><i>Methods:</i></b> An online population survey of Australian adults, nationally-representative by key demographics. An analysis of variance examined each level of the EQ-5D-5L <i>mobility dimension</i> rating against its LSA scores; Kendall's Tau assessed correlation. <b><i>Results:</i></b> Participants (<i>n</i> = 6366) were 53% women, mean age 46.1 years (SD 18.6), and mean LSA score 78.0 (SD = 27.5; possible range 0-120). At each EQ-5D-5L <i>mobility dimension</i> level there was a significant difference between LSA scores (<i>p</i> < 0.001), and a moderate negative correlation (Kendall's tau b = -0.342) between the two measures. <b><i>Conclusion:</i></b> Given the relationship defined, EQ-5D-5L <i>mobility dimension</i> ratings may prompt clinicians to consider further evaluation with the more detailed Life-Space Assessment. .</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1527-1530"},"PeriodicalIF":2.2,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142375549","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}