Journal of palliative medicine最新文献

{"title":"Concordance of the World Health Organization, Oral Assessment Guide, and Tardieu Scales for Assessment of Oral Mucositis and Oral Disorders in Palliative Care Patients.","authors":"Chiara Mastroianni, Anna Marchetti, Marco Sguanci, Simone Amato, Diana Giannarelli, Giuseppe Casale, Michela Piredda, Maria Grazia De Marinis","doi":"10.1089/jpm.2024.0505","DOIUrl":"https://doi.org/10.1089/jpm.2024.0505","url":null,"abstract":"<p><p><b><i>Background:</i></b> Oral disorders affect function, nutrition, and well-being in palliative care (PC) patients. Existing measures focus on patients actively treated for cancer, with no validated tools for PC populations. <b><i>Objectives:</i></b> To evaluate the concordance between the Oral Assessment Guide (OAG), Tardieu scale (Tardieu) and World Health Organization mucositis scale (WHO) for assessing oral disorders. <b><i>Design:</i></b> This study was part of a secondary analysis of a prospective, open-label, single-center, phase II study involving adult PC patients with cancer or noncancer diagnoses who could swallow and had a life expectancy of more than one week. <b><i>Results:</i></b> A total of 837 assessments were conducted in 77 patients. Strong correlations were observed between OAG, Tardieu, and WHO scores. The OAG had better agreement with WHO, showing a symmetric score distribution without outliers. <b><i>Conclusion:</i></b> Both OAG and Tardieu scales are effective for assessing oral disorders in PC, but OAG's simplicity, brevity, and ability to assess individual disorders make it preferable. Further validation in PC is recommended. <b>Study registration:</b> The study protocol was prospectively registered at ClinicalTrials.gov: NCT04911335.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143803413","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":"Honoring Advance Directives: A Scoping Review of Adherence and Impact on Value of Care.","authors":"Angus Hayes Chatham, Jeremy A Balch, Philip Hong, Naveen Baskaran, Lauren Manganiello, Kenneth L Abbott, Marcia Brown, Azra Bihorac, Philip A Efron, Benjamin Shickel, Ray Moseley, Tyler J Loftus","doi":"10.1089/jpm.2024.0328","DOIUrl":"https://doi.org/10.1089/jpm.2024.0328","url":null,"abstract":"<p><p><b><i>Introduction:</i></b> End-of-life clinical decision making can trigger profound emotional and financial distress. Advance directives intend to guide clinicians and surrogate decision makers; it is difficult to know how often they are honored. Moreover, there is limited research on associations between resource use and honoring advance directives. <b><i>Methods:</i></b> We performed a scoping review of primary research articles on Web of Science, Embase, and PubMed using search terms involving honoring of advance directives and associations with health care value. Value was defined broadly and included any study in which the quality of care was assessed relative to cost. <b><i>Results:</i></b> Twenty-nine studies met inclusion criteria, with 17 related to honoring advance directives, six related to the value of care, and seven examining both dimensions. Evidence regarding advance directive efficacy was mixed. Ten of 23 (43%) demonstrated a positive impact of advance directives on concordant care, ten showed minimal or no care differences between patients with and without advance directives, and three showed mixed evidence. Higher rates of concordant care were associated with do-not-hospitalize orders and physician-orders-for-life-sustaining-treatment as compared to other types. Concerning value, four studies showed reduced hospital length of stay, hospital admissions, and overall costs, whereas five found no difference in these variables. Four considered theoretical value impacts of advance directives on patients, hospitals, and health systems with value varying by stakeholder. There was limited analysis of advance directive implementation practices. <b><i>Conclusions:</i></b> There is mixed evidence related to the efficacy of advance directives in aligning care with patient wishes and improving the quality of care relative to cost. Investigation of implementation practices may provide insight into factors determining these varied outcomes. This review highlights opportunities to improve upon methodology for studying advance directives and applying them effectively.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143803381","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":"Palliative Care Referral Patterns and Outcomes for Patients with End-Stage Liver Disease at an Academic Liver Transplant Center.","authors":"Brittany L Waterman, Adam R Ketner, Jason A Benedict, Sarah Ehrman, Caitlin Bennett, Laura J Rush, Jennifer L Eramo, Halia L Melnyk, Gennaro Di Tosto, Julia L Agne, Erin Stevens, Lynn A Fussner, Ann Scheck McAlearney, Sean G Kelly","doi":"10.1089/jpm.2024.0171","DOIUrl":"https://doi.org/10.1089/jpm.2024.0171","url":null,"abstract":"<p><p><b><i>Background:</i></b> Patients with end-stage liver disease (ESLD) have complex needs and may benefit from palliative care (PC), which is often underutilized or delayed. <b><i>Objectives:</i></b> To characterize patients with ESLD who received inpatient PC consultation and to explore differences in characteristics between those who received PC consultation before (pre-Pall) or after (post-Pall) PC participation at weekly liver transplant (LT) Patient Selection Committee (PSC) meetings. <b><i>Design:</i></b> Single-center retrospective cohort study. <b><i>Setting/Subjects:</i></b> Hospitalized patients with ESLD who received inpatient PC consultation between February 2017 and February 2019 at an academic LT center in the United States. <b><i>Measurements:</i></b> PC referral reasons and timing, code status, hospice referrals, discharge location, and mortality. <b><i>Results:</i></b> Two hundred five patients were included. The primary reason for PC was goals of care (88.8%; <i>n</i> = 182). Most (86.8%; <i>n</i> = 178) were Full Code at hospital admission, while 81% (<i>n</i> = 166) were do-not-resuscitate at discharge. Nearly one quarter (22.9%; <i>n</i> = 47) sought life-prolonging care at discharge, while 41.5% (<i>n</i> = 85) were discharged with hospice, and 34.1% (<i>n</i> = 70) died before discharge. By the end of the study, 85.9% (<i>n</i> = 176) were confirmed as deceased. Median time from PC to hospice referral was 12 days [95% confidence interval [CI]: 8-23]. Median time from PC consult to death was 13 days [95% CI: 9-17] and from hospice referral to death was 7 days [95% CI: 4-13]. There were no statistically significant differences between the pre- and post-Pall groups related to PC referral patterns or outcomes. <b><i>Conclusions:</i></b> Most PC contacts occurred near end of life, and many led to comfort-focused care. Late referrals may be due to reliance on inpatient consults during acute illness. PC presence at PSC meetings represents an important step in collaboration with LT teams but did not lead to direct impact on PC referral patterns or outcomes.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143803386","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":"Prognosis and Promise.","authors":"Newsha Nikzad","doi":"10.1089/jpm.2025.0094","DOIUrl":"https://doi.org/10.1089/jpm.2025.0094","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143803390","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":"\"This Kind of Thing is Part of His Legacy\": Bereaved Parents' Experiences of Participating in Interview-Based Research.","authors":"Maile T Jones, Ananya Terala, Jessika C Boles","doi":"10.1089/jpm.2024.0547","DOIUrl":"https://doi.org/10.1089/jpm.2024.0547","url":null,"abstract":"<p><p><b><i>Background:</i></b> Every year, a significant number of parents/caregivers experience the loss of a child, many of whom have received palliative care services. The resultant consequences of grief on their physical and psychological well-being can be significant. Little is known about bereaved parents/caregivers experience with or perceptions about participating in bereavement-focused research. <b><i>Objective:</i></b> To explore bereaved parents' perceptions of participating in three research studies about their loss experiences and legacy perceptions. <b><i>Design:</i></b> A retrospective secondary analysis was conducted using qualitative and archival data drawn from three prior studies. <b><i>Setting/Subjects:</i></b> Participants included parents/caregivers of 44 children (ages from birth to 18 years) who died between 2000 and 2020 at a freestanding academic children's hospital in the United States. <b><i>Measurements:</i></b> Transcripts from semi-structured interviews and documentation of email communications were analyzed using an inductive coding approach grounded in psychological phenomenology. <b><i>Results:</i></b> Participant experiences of and motivations for participating in bereavement-related research were organized into two themes: 1) a means of extending the child's legacy and 2) an avenue for self-expression and gratitude. None of the participants across studies indicated any discomfort in, dissatisfaction with, or ill feelings toward bereavement research involvement. <b><i>Conclusions:</i></b> Bereaved parents/caregivers described their research participation in personally meaningful and altruistic ways and reported gratitude for their involvement in and the focus of the research. With careful attention to bereaved parent/caregiver participant needs and preferences, it is possible to produce impactful family-centered palliative care research that can improve anticipatory and bereavement service provision.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143795661","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":"Exploring Decision-Making and Patient Treatment Preferences and Concerns in Metastatic Breast Cancer: Findings from Medical Encounters in a Randomized Control Trial.","authors":"Emma K Hendrix, Nicole L Henderson, Garrett A Bourne, Courtney P Williams, Stacey A Ingram, Gabrielle B Rocque","doi":"10.1089/jpm.2024.0362","DOIUrl":"https://doi.org/10.1089/jpm.2024.0362","url":null,"abstract":"<p><p><b><i>Background:</i></b> Shared decision making (SDM) is critical for women with metastatic breast cancer (MBC), as they face complex treatment decisions involving trade-offs between efficacy, side effects, and quality of life. However, there is limited understanding of how these decision-making conversations unfold in clinical practice and how patient preferences are integrated. <b><i>Methods:</i></b> This qualitative study analyzed audio-recorded treatment decision-making encounters from a larger randomized controlled trial conducted between December 2018 and June 2022 at the University of Alabama at Birmingham. The trial evaluated the impact of a SDM intervention incorporating patient preferences into treatment plannings. Audio recordings were transcribed, time-stamped, and analyzed to determine total encounter time, speaker contributions, and encounter components. The qualitative data were also coded using NVivo to identify key themes related to patient preferences/concerns. <b><i>Results:</i></b> A total of 51 encounters were analyzed, with 51% of participants in the control arm and 49% in the intervention arm. Encounters ranged from 9 to 59 minutes, with an average length of 29 minutes. Oncologist speaking time averaged 18 minutes, while patient speaking time averaged 6 minutes. The majority of the time (62%) was devoted to treatment discussions, followed by relationship building (8%), results review (8%), and symptom review (7%). Prognostic discussions occurred in only 4% of encounter time. Patients expressed treatment concerns related to continuing daily activities, clinical trials, side effects, cost, and logistics, with no significant differences between intervention and control groups. <b><i>Conclusions:</i></b> While minor differences were observed between the control and intervention groups, overall, this study provides an in-depth exploration of the nature of decision-making encounters in MBC. Treatment decision-making encounters for women with MBC primarily focused on treatment options, with limited attention to prognosis and broader patient preferences. More comprehensive approaches are needed to effectively integrate patient values into clinical discussions. <b>IRB Statement:</b> This study was approved by the University of Alabama at Birmingham Institutional Review Board (IRB-300002283).</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143795663","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":"Unmet Palliative Care Needs Among Patients with Dementia at the End of Life and Frequent Use of the Emergency Department: One-Year Retrospective Study in a Central Hospital.","authors":"Sara Vieira Silva, Carla Teixeira, Bárbara Antunes","doi":"10.1089/jpm.2024.0447","DOIUrl":"https://doi.org/10.1089/jpm.2024.0447","url":null,"abstract":"<p><p><b><i>Background:</i></b> The use of emergency departments (ED) by patients with dementia at the end-of-life (EOL) presents various challenges. <b><i>Objective:</i></b> To evaluate the prevalence of unmet palliative care (PC) needs among patients with dementia who use the ED at their EOL. <b><i>Methods:</i></b> A single-center, retrospective study analyzing ED visits in the last 12 months of life among patients with dementia who died in 2021 (359 patients, 1042 ED visits) in Portugal. Unmet PC needs were assessed using the Palliative Care and Rapid Emergency Screening tool (P-CaRES). <b><i>Results:</i></b> Unmet PC needs were highly prevalent (78.2%). Dyspnea (30.9%) was the prevailing reason for ED visits; 29.5% of patients were considered frequent ED users. The association between P-CaRES status and frequent ED use was nonsignificant (<i>p</i> = 0.47). <b><i>Discussion:</i></b> The high prevalence of unmet PC needs and frequent ED use highlights the need for better responding to these needs.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143795666","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":"Performance of Predefined Search Patterns for Identifying Documented Goals-of-Care Discussions in Inpatient Electronic Health Records.","authors":"Robert Y Lee, Alison M Uyeda, Kevin S Li, James Sibley, Trevor Cohen, William B Lober, Danae G Dotolo, Ruth A Engelberg, Erin K Kross","doi":"10.1089/jpm.2024.0496","DOIUrl":"https://doi.org/10.1089/jpm.2024.0496","url":null,"abstract":"<p><p><b><i>Objective:</i></b> To characterize the sensitivity and predictive value of predefined search terms for identifying documented goals-of-care discussions in health records of hospitalized patients with serious illness. <b><i>Methods:</i></b> We evaluated the performance of 30 previously published and investigator-defined search terms codified into regular expressions (a type of pattern-based text search) in detecting goals-of-care documentation in a 2974-note corpus of electronic health record notes belonging to 159 inpatients enrolled in a U.S. clinical trial over 2020-2021. <b><i>Results:</i></b> Compared to conventional chart abstraction, search terms for \"goals of care\" and synonyms such as \"GOC\" had poor sensitivity (range: 29.5-38.3%) and modest positive predictive value (PPV; range: 48.3-61.7%) for identifying notes with goals-of-care documentation. Combinations of search terms demonstrated modest performance (sensitivity 62.0%, PPV 59.4%, F₁ 0.61) but fell short of more complex natural language processing models. <b><i>Conclusion:</i></b> In certain contexts, predefined regular-expression-based search terms may have suboptimal sensitivity and predictive value for identifying documented goals-of-care discussions.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780350","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":"Characterizing the Population of a Medical Cannabis Clinic in a Pediatric Hospital.","authors":"Taylor Free, Daniel H Grossoehme, Gwendolyn Richner, Miraides F Brown, Sarah Friebert","doi":"10.1089/jpm.2024.0533","DOIUrl":"https://doi.org/10.1089/jpm.2024.0533","url":null,"abstract":"<p><p><b><i>Background:</i></b> Medical cannabis (MC) is increasingly in use due to recent cultural and political changes. Other than patients with Lennox-Gastaut and Dravet syndrome, there is inadequate literature to provide evidence-based support for prescribing MC in pediatric patients. <b><i>Objectives:</i></b> Characterize the population receiving an MC recommendation in an ambulatory pediatric palliative care setting and quantify patient/family-reported outcomes. <b><i>Design:</i></b> Retrospective chart review of electronic medical record (EMR) data. <b><i>Setting/Subjects:</i></b> Total <i>n</i> = 46 consecutive patients receiving medical advice regarding MC (<i>n</i> = 42) in a specialized ambulatory clinic embedded in a palliative care division and <i>n</i> = 4 inpatient in a midwestern U.S. hospital between 2019 and 2022. <b><i>Measurements:</i></b> Demographics, diagnosis, symptoms, adverse reactions, patient-reported outcomes, and barriers abstracted from EMR. <b><i>Results:</i></b> Our sample included 46 palliative care patients with a mean age of 11.7 years (SD 5.4); 50% had a neurological diagnosis (<i>n</i> = 25); 37% (<i>n</i> = 14) hematological/oncologic; and 13% (<i>n</i> = 6), chronic pain. The most common type of MC recommended was 1:1 Cannabidiol (CBD): tetrahydrocannabinol (THC) tincture. There was a statistically significant decrease in inpatient floor days and cost. Totally, 35% of patients were able to decrease or discontinue other medications. Thematic analysis identified four barriers to use (product unavailable, difficulty obtaining state MC card, cost, and organizational) and subjective symptom improvement. <b><i>Conclusions:</i></b> These data characterize the palliative care MC clinic population at our pediatric hospital. Positive outcomes were noted across several symptom domains. MC seems to be associated with lower health care utilization, reduced polypharmacy, and increased quality of life and was used without significant adverse events. In a value-conscious health care environment, the data warrant further exploration.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780343","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":"Disease-Modifying Treatment Considerations in Patients at the End of Life with Rheumatic Diseases #506.","authors":"Maya N Faison, Adam Marks","doi":"10.1089/jpm.2025.0148","DOIUrl":"https://doi.org/10.1089/jpm.2025.0148","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780345","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}