{"title":"<i>Letter:</i> The End-of-Life Dreams and Visions Toolkit: Cultivating Understanding and Comfort.","authors":"Kathryn Levy, Hannah Rachiele","doi":"10.1177/10966218261486545","DOIUrl":"https://doi.org/10.1177/10966218261486545","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"10966218261486545"},"PeriodicalIF":1.8,"publicationDate":"2026-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148912647","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}
Kanako Takeda, Noyuri Yamaji, Emily Harrop, Charlotte Holland, Laura Nohavicka, Megumi Baba, Hirokazu Sakai, Nobuyuki Yotani
{"title":"Communication and Relationships in Pediatric Palliative End-of-Life Decision Making in the United Kingdom and Japan: A Cross-Cultural Scoping Review.","authors":"Kanako Takeda, Noyuri Yamaji, Emily Harrop, Charlotte Holland, Laura Nohavicka, Megumi Baba, Hirokazu Sakai, Nobuyuki Yotani","doi":"10.1177/10966218261470487","DOIUrl":"https://doi.org/10.1177/10966218261470487","url":null,"abstract":"<p><strong>Introduction: </strong>Decision making in pediatric end-of-life care for children with life-limiting or life-threatening conditions (LLC/LTCs) is ethically complex and shaped by cultural values and health care systems. Although shared decision making has been increasingly emphasized, comparative evidence on how communication and relationships influence pediatric end-of-life decision making across cultural contexts remains limited. This scoping review compared communication and interpersonal relationships among health care professionals (HCPs), parents, and children in the United Kingdom and Japan.</p><p><strong>Methods: </strong>A scoping review was conducted in accordance with the Joanna Briggs Institute Manual for Evidence Synthesis and the PRISMA-ScR guidelines. The protocol was prospectively registered (10.6084/m9.figshare.29923349). Five databases-PubMed, Web of Science, PsycINFO, CINAHL (EBSCO), and Ichushi Web, a Japanese database-were searched for studies published between 2012 and 2025 that addressed communication and relationships in pediatric end-of-life decision making.</p><p><strong>Results: </strong>Sixteen reports were included (nine from the United Kingdom and seven from Japan). U.K. studies predominantly employed qualitative interviews and conversation analysis, highlighting structured communication, explicit presentation of options, and multidisciplinary support as facilitators of parental involvement. Japanese studies were largely case-based and emphasized nurses' roles in emotional attunement, sustained relational support, and consensus-building with families. In both settings, parents and HCPs experienced substantial emotional burdens and ethical dilemmas in determining what would best serve the child's interests.</p><p><strong>Conclusions: </strong>This review suggested that communication and relationships in pediatric end-of-life decision making were shaped by cultural and structural contexts, as reflected in the United Kingdom's more formalized, option-focused communication and Japan's more relational, nurse-mediated approach to support and consensus-building. A shared challenge across both settings was interpreting the child's best interests while respecting parental involvement. Overall, the findings indicate that trust-based, child-centered, and culturally responsive communication may strengthen support for parents and HCPs navigating end-of-life decisions.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"10966218261470487"},"PeriodicalIF":1.8,"publicationDate":"2026-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148912696","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}
Jyothsna Kuriakose, Jacopo D'Andria Ursoleo, Barney Isaac, Balamugesh Thangakunam, Donald R Sullivan, Kathleen Lindell, Anne-Marie Russell, Rachel Hadler, Matthew Maddocks, Natalia Smirnova, Russell Portenoy, M R Rajagopal, Sarah Mohammed, Anand S Iyer, Smriti Rana, Natasha Smallwood, Christopher A Jones, Jenifer Jeba Sundararaj
{"title":"Top Ten Tips Palliative Care Clinicians Should Know About Caring for People with Interstitial Lung Diseases.","authors":"Jyothsna Kuriakose, Jacopo D'Andria Ursoleo, Barney Isaac, Balamugesh Thangakunam, Donald R Sullivan, Kathleen Lindell, Anne-Marie Russell, Rachel Hadler, Matthew Maddocks, Natalia Smirnova, Russell Portenoy, M R Rajagopal, Sarah Mohammed, Anand S Iyer, Smriti Rana, Natasha Smallwood, Christopher A Jones, Jenifer Jeba Sundararaj","doi":"10.1177/10966218261484821","DOIUrl":"https://doi.org/10.1177/10966218261484821","url":null,"abstract":"<p><p>Interstitial lung diseases (ILD) represent a heterogenous group of illnesses with significant multidimensional suffering and varied prognoses. Integration of palliative care (PC), though beneficial, is limited for this group of individuals. The complex care needs of people with ILD and their caregivers are underrecognized and incompletely addressed. This gap necessitates shared care by a multidisciplinary team along the illness trajectory. PC clinicians need to understand the illness patterns, prognoses, therapeutic options including lung transplant, symptom management, and other supportive interventions in ILD care. This article distills the current evidence into 10 practical tips to assist PC clinicians in delivering comprehensive care to people with ILD. These tips have been compiled by a multidisciplinary and interprofessional group consisting of pulmonologists, intensivists, academic clinicians, policy makers, physicians, nurses, and psychologists from specialist PC teams. Well-informed PC teams can significantly influence the illness experience of individuals with ILD and their caregivers, thereby reducing serious health-related suffering.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"10966218261484821"},"PeriodicalIF":1.8,"publicationDate":"2026-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148891908","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}
Harvey Max Chochinov, Marianne Sofronas, Joseph J Fins
{"title":"Liminal Personhood and Continuity of Moral Identity in Clinical Care.","authors":"Harvey Max Chochinov, Marianne Sofronas, Joseph J Fins","doi":"10.1177/10966218261484816","DOIUrl":"https://doi.org/10.1177/10966218261484816","url":null,"abstract":"<p><p>Capacity-based frameworks of personhood risk marginalizing individuals whose agency, cognition, or consciousness are diminished by illness, brain injury, or proximity to death. This article introduces the concept of <i>liminal personhood</i>, which describes the persistence of moral and relational identity even as conventional markers of personhood fade. Drawing on ethical, philosophical, and neuroethical scholarship, the paper argues that failing to recognize enduring personhood can fracture patient identity and erode clinician and caregiver moral integrity. Recognition of liminal personhood has clear clinical utility: It guides dignity-conserving care, supports relational engagement, and sustains clinicians' ethical coherence amid profound vulnerability, thus offering a practical framework for humane care at the edges of consciousness and decisional capacity.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"10966218261484816"},"PeriodicalIF":1.8,"publicationDate":"2026-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148880845","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":"The Quiet Conflict of Caring: Things We Do because We Must.","authors":"Júlia Drummond de Carmargo","doi":"10.1177/10966218261486912","DOIUrl":"https://doi.org/10.1177/10966218261486912","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"10966218261486912"},"PeriodicalIF":1.8,"publicationDate":"2026-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148887727","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}
Simran Kripalani, Howard Eison, Goretti Nassali, Prossy Nafula, Benjamin Schwarz, Randi Diamond
{"title":"Palliative Surgery to Restore Function and Dignity: A Case of Massive Breast Tumor Debulking in Rural Uganda.","authors":"Simran Kripalani, Howard Eison, Goretti Nassali, Prossy Nafula, Benjamin Schwarz, Randi Diamond","doi":"10.1177/10966218261485008","DOIUrl":"https://doi.org/10.1177/10966218261485008","url":null,"abstract":"<p><strong>Background: </strong>Palliative surgery plays a critical role in alleviating symptom burden and thus improving quality of life in patients with advanced disease.</p><p><strong>Case presentation: </strong>This is a case of a 23-year-old female in rural Uganda with an untreated, massive right breast mass present since infancy and progressive abdominal distention of unclear etiology. Over time, the breast mass impaired her mobility, rendering her largely homebound and dependent on others for basic movement. Despite evidence of profound malnutrition, the patient expressed a clear goal: to regain the ability to walk in the time she had left. After multidisciplinary discussions and goals-of-care conversations, she was able to undergo medical optimization. She underwent a right total mastectomy under limited anesthesia. A 9.6 kg mass was successfully removed without complication. Postoperatively, she regained independent ambulation and reported significant improvement in quality of life.</p><p><strong>Discussion: </strong>This case highlights the value of palliative surgery in restoring function and dignity in the context of limited life expectancy. Patient-centered decision-making prioritizing patient values, clear communication, and interdisciplinary collaboration are all important considerations in decision-making. In low-resource settings, where access to early diagnosis and treatment is often limited, palliative surgical interventions can offer meaningful improvements in autonomy and well-being.</p><p><strong>Conclusion: </strong>Palliative surgery, when aligned with patient goals, can provide substantial functional and psychosocial benefits.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"10966218261485008"},"PeriodicalIF":1.8,"publicationDate":"2026-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148880855","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}
Daniel Shalev, Indrany Datta-Barua, Leah B Rosenberg, Keri O Brenner, Theodore Scheel, Danielle Chammas
{"title":"Threatened Identity: Self Psychology Informed Communication for Serious Illness Care.","authors":"Daniel Shalev, Indrany Datta-Barua, Leah B Rosenberg, Keri O Brenner, Theodore Scheel, Danielle Chammas","doi":"10.1177/10966218261484373","DOIUrl":"https://doi.org/10.1177/10966218261484373","url":null,"abstract":"<p><p>Serious illness threatens both the body and the self: the coherent, continuous sense of who one is, from bodily integrity to psychosocial identity. When illness disrupts identity and patients confront mortality and dependence, a range of responses may follow, including behaviors such as relentless demands, devaluation of clinicians, insistence on additional treatment, or rage at perceived care failures. These presentations are often labeled \"narcissistic,\" yet such a formulation can foreclose clinical understanding. Heinz Kohut's self psychology offers a more generative framework: one that understands these behaviors as attempts to preserve self-cohesion when illness threatens identity, autonomy, competence, and roles. Because needs for recognition, connection, and reliable support persist throughout life, serious illness often exposes vulnerabilities that were previously stabilized through work, relationships, and social roles. Informed by self psychology's core concepts-self-object needs, mirroring, idealizing, twinship, and empathic attunement-this paper presents practical serious illness communication tools designed to reduce interpersonal conflict, strengthen therapeutic alliance, and support patients in maintaining a coherent sense of self as illness progressively reshapes what is possible.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"10966218261484373"},"PeriodicalIF":1.8,"publicationDate":"2026-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148880810","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}
Asia Estis-Deaton, Daphna Grossman, Tania Johannsen, Kathleen Milne, Leah Salvage, Michael Bonares
{"title":"Palliative Care Services for Patients with Noncancer Diseases in Outpatient Clinics Across Canada: A National Survey Study.","authors":"Asia Estis-Deaton, Daphna Grossman, Tania Johannsen, Kathleen Milne, Leah Salvage, Michael Bonares","doi":"10.1177/10966218261485698","DOIUrl":"https://doi.org/10.1177/10966218261485698","url":null,"abstract":"<p><strong>Background: </strong>The palliative care needs of patients with noncancer diseases are increasingly recognized, yet the prevalence, models, and delivery of outpatient specialist palliative care for these populations remain understudied.</p><p><strong>Objective: </strong>To describe outpatient palliative care clinics for noncancer diseases across Canada, including clinic prevalence and models of care.</p><p><strong>Methods: </strong>Cross-sectional survey study of practicing Canadian palliative care physicians recruited nationally. Quantitative data were analyzed descriptively, and qualitative data were analyzed using thematic analysis.</p><p><strong>Results: </strong>Eighty-eight physicians responded (response rate = 13.2%). Fifty-six physicians from seven provinces completed the survey, representing 49 noncancer palliative care clinics. Most clinics (71%) were disease-agnostic or focused on neurological or transplant populations. Majority were stand-alone clinics (55.5%, 95% confidence interval [CI] = 37%-72%), with the remainder embedded in disease-specific clinics (37%, 95% CI = 28%-63%). Joint specialist-palliative visits were uncommon (32%; 95% CI = 18%-51%). Few initial visits were virtual (2%; interquartile range [IQR] = 0%-5% for telephone and 0%-6% for video), and rural patients constituted a minority of caseloads (median = 20%; IQR = 10%-50%). Referral criteria varied, with some incorporating prognosis and functional scores. Barriers included logistical constraints, staffing, and variable disease specialists and institutional supports. Communication and collaboration were identified as key strategies to overcome barriers.</p><p><strong>Conclusions: </strong>While outpatient palliative care clinics for noncancer diseases in Canada appear to be growing, survey respondents identified ongoing challenges including variable referral practices, limited resources, and gaps in rural access. These preliminary findings should be interpreted with caution given the response rate and missing data. Nevertheless, they underscore the need to address barriers to equitable and timely palliative care access in these populations.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"10966218261485698"},"PeriodicalIF":1.8,"publicationDate":"2026-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148880832","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}