Palliative & Supportive Care最新文献

{"title":"Talking about desire to die: Talking past each other? A framework analysis of interview triads with patients, informal caregivers, and health professionals.","authors":"Kathleen Boström, Thomas Dojan, Thessa Thölking, Leonie Gehrke, Carolin Rosendahl, Raymond Voltz, Kerstin Kremeike","doi":"10.1017/S1478951524002104","DOIUrl":"10.1017/S1478951524002104","url":null,"abstract":"<p><strong>Objectives: </strong>Up to 40% of seriously ill patients develop a (temporary) desire to die which can lead to requests for assisted dying. Health professionals often feel uncertain about addressing these topics, while informal caregivers may feel guilty and left out. Open and respectful communication proves beneficial. It remains unclear how this communication ideal realizes within the lived experience of all 3 parties. Therefore, we conducted in-depth analysis of communication strategies about desire to die from triangulated perspectives of patients, informal caregivers, and health professionals.</p><p><strong>Methods: </strong>We conducted semi-structured interviews with purposefully sampled triads consisting of seriously ill patients, their respective informal caregivers and health professionals. Interviews were part of the qualitative evaluation of a 3-phase mixed-methods study on the effects of communication about desire to die on seriously ill patients. We followed a framework analysis approach to build communication types.</p><p><strong>Results: </strong>From the <i>N</i> = 13 patients, 54% suffered from oncological diseases. Health professionals (<i>N</i> = 13) were multiprofessional. Informal caregivers (<i>N</i> = 13) were partners, children, or another relation. All in all, we conducted <i>N</i> = 14 interview triads (<i>n</i> = 3 incomplete; <i>N</i> = 39 individual interviews).Four key themes emerged from analysis: (a) how open communication was perceived, (b) whether participants reported shared reality, (c) how they talked about death, and (d) their communication strategies.Ultimately, 3 communication types were inductively derived at from these key themes. Type 1 \"Between the Lines,\" type 2 \"Past each Other\" and type 3 \"Matter of Fact\" show differing expressions on the key themes, especially on (b) shared reality. Specific type characteristics produce suggestions for health professionals' communicative practice.</p><p><strong>Significance of results: </strong>Awareness of typical communication strategies is necessary to foresee potential pitfalls such as loss of information or acting on unchecked assumptions. To reduce distress and increase information flow, health professionals should actively approach informal caregivers for desire to die conversations.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e83"},"PeriodicalIF":1.9,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143693734","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Prognostic utility of Palliative Prognostic Index in advanced cancer: A systematic review and meta-analysis.","authors":"Si Qi Yoong, Hui Zhang, Dee Whitty, Wilson Wai San Tam, Wenru Wang, Davina Porock","doi":"10.1017/S1478951525000021","DOIUrl":"10.1017/S1478951525000021","url":null,"abstract":"<p><strong>Objectives: </strong>To evaluate the prognostic utility of Palliative Prognostic Index (PPI) scores in predicting the death of adults with advanced cancer.</p><p><strong>Methods: </strong>A systematic review and meta-analysis were conducted. Six databases were searched for articles published from inception till 16 February 2024. Observational studies reporting time-to-event outcomes of PPI scores used in any setting, timing and score cutoffs were eligible. Participants were adults with advanced cancer residing in any setting. Random effects meta-analysis was used to pool hazard, risk, or odds ratios. Findings were narratively synthesized when meta-analysis was not possible.</p><p><strong>Results: </strong>Twenty-three studies (<i>n</i> = 11,235 patients) were included. All meta-analyses found that higher PPI scores or risk categories were significantly associated with death and, similarly, in most narratively synthesized studies. PPI > 6 vs PPI ≤ 4 (pooled adjusted HR = 5.42, 95% confidence intervals [CI] 2.01-14.59, <i>p</i> = 0.0009; pooled unadjusted HR = 5.05, 95% CI 4.10-6.17, <i>p</i> < 0.00001), 4 < PPI ≤ 6 vs PPI ≤ 4 (pooled adjusted HR = 2.04, 95% CI 1.30-3.21, <i>p</i> = 0.002), PPI ≥ 6 vs PPI < 6 (pooled adjusted HR = 2.52, 95% CI 1.39-4.58, <i>p</i> = 0.005), PPI ≤ 4 vs PPI > 6 for predicting inpatient death (unadjusted RR = 3.48, 95% CI 2.46-4.91, <i>p</i> < 0.00001), and PPI as a continuous variable (pooled unadjusted HR = 1.30, 95% CI 1.22-1.38, <i>p</i> < 0.00001) were significant predictors for mortality. Changes in PPI scores may also be useful as a prognostic factor.</p><p><strong>Significance of results: </strong>A higher PPI score is likely an independent prognostic factor for an increased risk of death, but more research is needed to validate the risk groups as defined by the original development study. Meta-analysis results need to be interpreted cautiously, as only 2-4 studies were included in each analysis. Clinicians and researchers may find this useful for guiding decision-making regarding the suitability of curative and/or palliative treatments and clinical trial design.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e80"},"PeriodicalIF":1.9,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143693708","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"I Am More.","authors":"Zhaohui Su","doi":"10.1017/S1478951525000215","DOIUrl":"https://doi.org/10.1017/S1478951525000215","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e82"},"PeriodicalIF":1.9,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143693436","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and validation of the Terminal Delirium-Related Distress Scale - Shortform.","authors":"Megumi Uchida, Tatsuo Akechi, Tatsuya Morita, Kento Masukawa, Yoshiyuki Kizawa, Satoru Tsuneto, Mitsunori Miyashita","doi":"10.1017/S1478951525000227","DOIUrl":"10.1017/S1478951525000227","url":null,"abstract":"<p><strong>Background: </strong>We previously developed a 24-item Terminal Delirium-Related Distress Scale (TDDS) to evaluate patient and family distress due to terminal delirium. However, a scale with fewer evaluation items was needed to reduce the burden on terminally ill patients and their families. Thus, the TDDS Shortform (TDDS-SF) was developed, and the validity and reliability of the scale were evaluated.</p><p><strong>Objectives: </strong>The aim of this study is to evaluate the validity and reliability of TDDS-SF.</p><p><strong>Methods: </strong>Items with insufficient loading (<0.6) based on factor analysis were removed from the TDDS. Palliative care experts reviewed each item and checked the structure of the scale. Based on their feedback, we developed the TDDS-SF, a 15-item questionnaire consisting of 4 subscales, including \"Care for the family,\" \"Ability to communicate,\" \"Psychiatric symptoms,\" and \"Adequate information and discussion about treatment for delirium.\" A cross-sectional, self-completed questionnaire survey of bereaved families of cancer patients who were admitted to a hospice/palliative care unit was conducted in August 2018. The survey included the TDDS-SF, Good Death Inventory (GDI), Care Evaluation Scale (CES), and distress score in the Delirium Experience Questionnaire. The validity, including construct validity, convergent validity, discriminant validity, and internal consistency, and reliability, including the Cronbach's alpha coefficient for internal consistency, of the TDDS-SF were evaluated.</p><p><strong>Results: </strong>The study included 366 bereaved family members. Factor analysis revealed good construct validity. Convergent validity was demonstrated based on good correlations with the CES (<i>r</i> = - 0.54, <i>P</i> < 0.001) and the GDI (<i>r</i> = - 0.54, <i>P</i> < 0.001). Discriminant validity was demonstrated by a low correlation (<i>r</i> = 0.23, <i>P</i> < 0.001) with the distress scores of bereaved families. The internal consistency was also good (Cronbach's alpha = 0.70-0.94).</p><p><strong>Significance of results: </strong>The TDDS-SF is a valid and feasible tool for assessing irreversible terminal delirium-related distress. A study targeting patients and their families with end-of-life delirium is planned for the near future.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e78"},"PeriodicalIF":1.9,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626481","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How to improve dealing with desire to die in hospice volunteers and informal caregivers.","authors":"Kathleen Boström, Thomas Dojan, Axel Doll, Thomas Montag, Raymond Voltz, Kerstin Kremeike","doi":"10.1017/S1478951525000239","DOIUrl":"10.1017/S1478951525000239","url":null,"abstract":"<p><strong>Objectives: </strong>Up to 40% of severely ill patients report at least an occasional desire to die, opening up not only to professionals but also to hospice volunteers and patients' informal caregivers. Based on an existing, evaluated 2-day desire to die training for professionals, we intend to adapt the training for hospice volunteers and informal caregivers, both face-to-face and online and provide a preliminary evaluation.</p><p><strong>Methods: </strong>Multi-method approach to (1) assess needs regarding content and form for (online) trainings for hospice volunteers and formats for informal care givers using online focus groups and (additional) individual interviews, (2) adapt existing training materials for both groups accompanied by expert discussion, and (3) pilot and evaluate the (online) trainings and formats through (online) surveys.</p><p><strong>Results: </strong>In an online focus group with <i>n</i> = 4 informal caregivers and <i>n</i> = 2 additional online interviews, participants reported wishes for form (e.g. short formats in plain language) and content (e.g. needs in relation to health professional and patient). The <i>n</i> = 6 hospice volunteers also wished for form (e.g. plain language) and content (e.g. volunteer role). Results were implemented in (a) a volunteer adaptation of the training, e.g. with target-group-specific case studies and (b) the development of an online format for informal caregivers. For evaluation, we conducted (a) 2 face-to-face trainings for hospice volunteers (<i>n</i> = 14 and <i>n</i> = 20) and (b) 2 online formats for informal caregivers (<i>n</i> = 7 and <i>n</i> = 13). Both groups benefited strongly from participation.</p><p><strong>Significance of results: </strong>Hospice volunteers and informal caregivers deal with patients' desires to die - often without being adequately prepared. Through (online) trainings and formats, their awareness and self-confidence regarding desire to die can increase. It is therefore of high relevance to meet the demand for easily accessible and target group specific (online) trainings on dealing with desire to die.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e77"},"PeriodicalIF":1.9,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626482","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Peaceful acceptance and struggle with terminal cancer: The role of mindfulness, self-compassion, and body image distress.","authors":"Francesco De Vincenzo, Rossella Mattea Quinto, Luca Iani, Sieva Durante, Chiara Scalpelli, Luigi Lombardo","doi":"10.1017/S1478951525000094","DOIUrl":"10.1017/S1478951525000094","url":null,"abstract":"<p><strong>Objectives: </strong>This study aimed to examine the extent to which mindfulness, self-compassion, and body image distress are associated with peaceful acceptance or struggle with illness in terminally ill cancer patients, after controlling for psychological distress, sociodemographic characteristics (age, gender, education, marital status), and clinical characteristics (body mass index, Karnofsky Performance Status, time since diagnosis).</p><p><strong>Methods: </strong>A cross-sectional study was conducted with 135 terminally ill cancer patients. Participants were consecutively sampled. Two five-step hierarchical regression models were performed, one for peaceful acceptance and the other for struggle with illness. The models included sociodemographic (step 1), clinical characteristics (step 2), psychological distress (step 3), mindfulness and self-compassion (step 4), and body image distress (step 5).</p><p><strong>Results: </strong>Body image distress was negatively associated with peaceful acceptance after controlling for the other variables. Both body image distress and self-compassion were uniquely associated with struggle with illness, in a positive and negative direction, respectively. The overall models explained 33% of the variance in peaceful acceptance and 61% in struggle with illness.</p><p><strong>Significance of results: </strong>Targeting body image distress may be important for both enhancing peaceful acceptance and reducing struggle with one's terminal condition. Addressing self-compassion, however, may help patients alleviate the struggle alone. These findings suggest that peaceful acceptance and struggle with illness may follow different clinical pathways with partly different underlying mechanisms. This study provides a foundation for future research to develop interventions for body image and self-compassion specifically tailored to the needs of terminally ill cancer patients.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e76"},"PeriodicalIF":1.9,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626483","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Resilient living program for patients with advanced cancer and their caregivers.","authors":"Sherry Chesak, Lori Rhudy, Susanne M Cutshall, Konstantinos Leventakos, Cindy Tofthagen, Jay Mandrekar, Teresa A Rummans, Matthew M Clark, Shawna Ehlers, Maria I Lapid, Amit Sood, Deirdre R Pachman","doi":"10.1017/S1478951524002128","DOIUrl":"10.1017/S1478951524002128","url":null,"abstract":"<p><strong>Objectives: </strong>Patients with advanced cancer and their caregivers experience a substantial amount of anxiety and distress. The purpose of this study was to assess the feasibility, acceptability, and preliminary effects of an 8-week, remotely delivered Resilient Living Program (RLP) for adult patients with advanced cancer and their caregivers.</p><p><strong>Methods: </strong>Eligible patients included adults (≥18 years) with advanced cancer. Their caregiver had the option to participate. The RLP components included online modules, a print journal, and 4 video-telehealth-delivered sessions. Content focused on techniques for managing stress and building resilience (mindful presence, uplifting emotions, reframing experiences through practicing principles of gratitude, compassion, acceptance, meaning, and forgiveness). Feasibility and acceptability were assessed quantitatively and with semi-structured interviews conducted with a subset of participants. Effectiveness measures (anxiety, stress, quality of life [QOL], sleep, resiliency, and fatigue) were administered at baseline, week 5, week 9, and week 12.</p><p><strong>Results: </strong>Of the eligible patients, 33/72 (46%) were enrolled. In all, 15 caregivers enrolled. Thirty participants (21 patients/9 caregivers) completed at least 3 video-telehealth sessions (63% adherence). For patients, there were statistically significant improvements in anxiety and fatigue at week 12 (<i>p</i> = 0.05). Other effectiveness measures (stress, QOL, sleep, resiliency) showed positive trends. Eleven participants were interviewed and qualitative analysis revealed 4 themes: Easy to Use, Learning Key Principles, Practice is Essential, and Examples of Benefits.</p><p><strong>Significance of results: </strong>Participation in the RLP was feasible and acceptable for patients with advanced cancer and their caregivers. Participants tended to indicate that the practices were easy to integrate into their everyday lives, engendered their ability to focus on the positive, and would recommend the RLP to other individuals living with advanced cancer. Preliminary effectiveness data suggest the program may positively impact anxiety, stress, QOL, sleep, resiliency, and fatigue. A larger randomized clinical trial is warranted to confirm these preliminary findings.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e75"},"PeriodicalIF":1.9,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143625050","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Dignity in Serious Illness: A Qualitative Exploration of Family Caregivers' Contributions in low middle-income country - ERRATUM.","authors":"Silva Dakessian Sailian, Yakubu Salifu, Nancy Preston","doi":"10.1017/S1478951525000288","DOIUrl":"10.1017/S1478951525000288","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e74"},"PeriodicalIF":1.9,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143617624","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Opioid withdrawal syndrome induced by naldemedine administration in a cancer patient without brain metastasis.","authors":"Mayumi Ishida, Kojun Okamoto, Isamu Koyama, Nozomu Uchida, Izumi Sato, Akira Yoshioka, Ryota Sato, Hideki Onishi","doi":"10.1017/S147895152500001X","DOIUrl":"10.1017/S147895152500001X","url":null,"abstract":"<p><strong>Objectives: </strong>Naldemedine is a peripherally acting μ-opioid receptor antagonist used to treat opioid-induced constipation. As this drug does not cross the blood-brain barrier, it is believed that patients without brain metastases do not experience opioid withdrawal symptoms.</p><p><strong>Methods: </strong>Here, we experienced a case in which a cancer patient without brain metastasis presented with anxiety and restlessness that was severe enough to interfere with daily life. The patient was diagnosed with naldemedine-induced opioid withdrawal syndrome.</p><p><strong>Results: </strong>The patient was a 66-year-old male with liver cancer metastasizing to the chest wall, but without brain metastasis. Oxycodone was started at 10 mg/day 2 months prior to his visit to our department to treat pain related to the chest wall metastasis, and was increased to 100 mg/day 1 month later and maintained at that dose. Naldemedine was administered as a countermeasure against opioid-induced constipation. The patient developed anxiety and restlessness 10 days prior to his initial visit to our department. After detailed examination, naldemedine-related opiod withdrawal syndrome was suspected on the basis of anxiety, agitation, and episodes of sudden onset sweating, and these symptoms disappeared within 2 days after the discontinuation of naldemedine, with no recurrence observed thereafter. In addition, head MRI revealed no brain metastasis.</p><p><strong>Significance of the results: </strong>Even in patients without brain metastasis, naldemedine can induce opioid withdrawal symptoms, so caution is required with patients receiving this drug. In addition, when psychiatric symptoms are pronounced, as in this case, withdrawal symptoms may be underdiagnosed.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e64"},"PeriodicalIF":1.9,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143617628","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Memento mori.","authors":"Ellen Zhang","doi":"10.1017/S1478951525000203","DOIUrl":"https://doi.org/10.1017/S1478951525000203","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e74"},"PeriodicalIF":1.9,"publicationDate":"2025-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143574347","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}