Objective: Our study examines how non-small cell lung cancer (NSCLC) survivors undergoing immunotherapy can experience reduced anxiety and psychological distress, improved quality of life (QOL) and increased immunotherapy efficacy.
Methods: 133 men and 20 women with NSCLCs were enrolled. In a randomised controlled trial involving a care as usual group (CG) and a music therapy group (MTG), the researchers employed various tools such as the Self-Rating Anxiety Scale, Symptom Distress Thermometer, Functional Assessment of Cancer Therapy-General version 4 and Response Evaluation Criteria in Solid Tumours. These measures were used to evaluate anxiety, psychological distress, QOL and immunotherapy efficacy in patients undergoing immunotherapy before and after patients' completion.
Results: After the intervention, patients in the MTG demonstrated a noteworthy reduction in anxiety (t=6.272, p≤0.001) and distress (t=10.111, p≤0.001), as well as an increase in QOL (t=-7.649, p≤0.001). Moreover, compared with patients in the CG, those in the MTG demonstrated a remarkable drop in anxiety (t=-4.72, p≤0.001) and distress (t=-7.29, p≤0.001), a significant increase in QOL (t=5.363, p≤0.001) and a significant improvement in immunotherapy efficacy (z=-2.18, p≤0.05) after the intervention.
Conclusions: The use of individual music therapy sessions appears to be effective in reducing anxiety and distress, while also increasing QOL and immunotherapy efficacy in patients with NSCLCs undergoing immunotherapy.
{"title":"Music therapy, quality of life and efficacy of immunotherapy for NSCLC.","authors":"Xu Duan, Yingxue Jia, Jiaying Chai, Wen Li, Lingxue Tang, Anlong Li, Han Ge, Runze Huang, Huaidong Cheng","doi":"10.1136/spcare-2023-004325","DOIUrl":"10.1136/spcare-2023-004325","url":null,"abstract":"<p><strong>Objective: </strong>Our study examines how non-small cell lung cancer (NSCLC) survivors undergoing immunotherapy can experience reduced anxiety and psychological distress, improved quality of life (QOL) and increased immunotherapy efficacy.</p><p><strong>Methods: </strong>133 men and 20 women with NSCLCs were enrolled. In a randomised controlled trial involving a care as usual group (CG) and a music therapy group (MTG), the researchers employed various tools such as the Self-Rating Anxiety Scale, Symptom Distress Thermometer, Functional Assessment of Cancer Therapy-General version 4 and Response Evaluation Criteria in Solid Tumours. These measures were used to evaluate anxiety, psychological distress, QOL and immunotherapy efficacy in patients undergoing immunotherapy before and after patients' completion.</p><p><strong>Results: </strong>After the intervention, patients in the MTG demonstrated a noteworthy reduction in anxiety (t=6.272, p≤0.001) and distress (t=10.111, p≤0.001), as well as an increase in QOL (t=-7.649, p≤0.001). Moreover, compared with patients in the CG, those in the MTG demonstrated a remarkable drop in anxiety (t=-4.72, p≤0.001) and distress (t=-7.29, p≤0.001), a significant increase in QOL (t=5.363, p≤0.001) and a significant improvement in immunotherapy efficacy (z=-2.18, p≤0.05) after the intervention.</p><p><strong>Conclusions: </strong>The use of individual music therapy sessions appears to be effective in reducing anxiety and distress, while also increasing QOL and immunotherapy efficacy in patients with NSCLCs undergoing immunotherapy.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"140-149"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10170758","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}
Pub Date : 2025-12-23DOI: 10.1136/spcare-2025-005661
Claire Stokes, Aaryan Khagram, Billie Metselaar, Taylan Gurgenci, Phillip Good
Patients with life-limiting illnesses often experience profound emotional and spiritual challenges that conventional palliative care treatments may not fully alleviate. Psychedelics, with their potential to facilitate deep psychological insight, offer a promising approach to enhancing end-of-life care. Despite growing interest and emerging psychiatric applications, their use in palliative settings remains poorly understood, with existing studies limited by small sample sizes and low methodological quality. This article outlines a research agenda that prioritises adequately powered randomised controlled trials with patient-centred outcome measures, with an aim to inform policy and practice change.
{"title":"Psychedelic drugs in palliative care: research agenda.","authors":"Claire Stokes, Aaryan Khagram, Billie Metselaar, Taylan Gurgenci, Phillip Good","doi":"10.1136/spcare-2025-005661","DOIUrl":"10.1136/spcare-2025-005661","url":null,"abstract":"<p><p>Patients with life-limiting illnesses often experience profound emotional and spiritual challenges that conventional palliative care treatments may not fully alleviate. Psychedelics, with their potential to facilitate deep psychological insight, offer a promising approach to enhancing end-of-life care. Despite growing interest and emerging psychiatric applications, their use in palliative settings remains poorly understood, with existing studies limited by small sample sizes and low methodological quality. This article outlines a research agenda that prioritises adequately powered randomised controlled trials with patient-centred outcome measures, with an aim to inform policy and practice change.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"79-81"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145291086","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}
Pub Date : 2025-12-23DOI: 10.1136/spcare-2024-004805
Iris Beuls, Ann Petermans, Jan Vanrie
Objective: This article aims to explore architectural-rich insights derived from users' experiences within everyday practice in palliative environments and provides a practical framework for healthcare organisations, architects and researchers involved in (re)designing palliative environments for person-centred care.
Methods: An ethnographic study involving participatory observation was undertaken to gain insight into the influence of palliative environments on the diverse users' subjective experiences. This immersive research took place across multiple palliative environments, encompassing a palliative care unit, a day care centre for palliative care and a hospice located in Belgium. Also, informal conversations and photo-elicitation interviews were conducted with residents, family members, healthcare professionals, volunteers and maintenance staff.
Results: Analysing the subjective experiences yielded a practical framework of four architectural atmospheres (proximity, support, engagement, comfort) intended to serve as guiding principles for designing palliative environments. To shape these atmospheres, this article elaborates on 17 spatial aspects and aligns them with real-life experiences of users within palliative environments, thereby enriching and contextualising these insights.
Conclusions: This study presents a practical framework encompassing atmospheres, spatial aspects and overarching insights. It is augmented by supplemental material featuring real-life user experiences, all directed towards guiding the design of palliative environments in pursuit of person-centred palliative care. This article advocates for a collaborative, interdisciplinary, holistic design approach that acknowledges these considerations' interconnectedness and considers the users' multiple perspectives. Ultimately, this approach serves as a means of bridging design intentions and actual experiences encountered by users in their real-life contexts to assist healthcare organisations and architects in creating environments for person-centred palliative care.
{"title":"Connect, care, create: practical framework for physical environment design for person-centred palliative care.","authors":"Iris Beuls, Ann Petermans, Jan Vanrie","doi":"10.1136/spcare-2024-004805","DOIUrl":"10.1136/spcare-2024-004805","url":null,"abstract":"<p><strong>Objective: </strong>This article aims to explore architectural-rich insights derived from users' experiences within everyday practice in palliative environments and provides a practical framework for healthcare organisations, architects and researchers involved in (re)designing palliative environments for person-centred care.</p><p><strong>Methods: </strong>An ethnographic study involving participatory observation was undertaken to gain insight into the influence of palliative environments on the diverse users' subjective experiences. This immersive research took place across multiple palliative environments, encompassing a palliative care unit, a day care centre for palliative care and a hospice located in Belgium. Also, informal conversations and photo-elicitation interviews were conducted with residents, family members, healthcare professionals, volunteers and maintenance staff.</p><p><strong>Results: </strong>Analysing the subjective experiences yielded a practical framework of four architectural atmospheres (proximity, support, engagement, comfort) intended to serve as guiding principles for designing palliative environments. To shape these atmospheres, this article elaborates on 17 spatial aspects and aligns them with real-life experiences of users within palliative environments, thereby enriching and contextualising these insights.</p><p><strong>Conclusions: </strong>This study presents a practical framework encompassing atmospheres, spatial aspects and overarching insights. It is augmented by supplemental material featuring real-life user experiences, all directed towards guiding the design of palliative environments in pursuit of person-centred palliative care. This article advocates for a collaborative, interdisciplinary, holistic design approach that acknowledges these considerations' interconnectedness and considers the users' multiple perspectives. Ultimately, this approach serves as a means of bridging design intentions and actual experiences encountered by users in their real-life contexts to assist healthcare organisations and architects in creating environments for person-centred palliative care.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"198-206"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142543665","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}
Pub Date : 2025-12-23DOI: 10.1136/spcare-2025-005745
Mymy Tran, Kah Yee Tham, Susanne Webster, Lauren Troy, Caitlin Fermoyle, Christin Monika Geis, Helen Jo, Alan Teoh, Laura Glenn, Nathan Mortimer, Kelly Mian Chen, Aruvi Thiruvarudchelvan, Tamera J Corte, Anthoulla Mohamudally
Objectives: To facilitate earlier access to palliative care (PC) for interstitial lung disease (ILD) patients, a combined ILD-PC clinic was launched at Royal Prince Alfred Hospital. We describe referral patterns and clinical practice 16 months post-implementation.
Methods: A review of consecutive patients referred to the ILD-PC clinic was performed. Reasons for referral, PC interventions implemented and clinical outcomes were documented.
Results: 36 patients were referred to the ILD-PC clinic (75±8 years; 57% men). Diagnoses included idiopathic pulmonary fibrosis (49%), unclassifiable ILD (14%), chronic hypersensitivity pneumonitis (14%) and connective tissue disease-associated ILD (11%). Reasons for referral included high symptom burden (91%), advanced disease (66%) and disease progression (49%). PC management strategies encompassed symptom management (60%), referral to community PC services (40%), advance care planning (26%) and the prescription of opioids and benzodiazepines (23%). During the follow-up period, 23% of patients self-reported worsening symptoms, 40% demonstrated lung function decline, 11% died and 6% were listed for lung transplantation.
Conclusions: The ILD-PC clinic incorporates a multidisciplinary, patient-centred approach to ILD care by enabling early access to symptom management, community services and advance care planning.
{"title":"Interstitial lung disease: multidisciplinary outpatient palliative care service.","authors":"Mymy Tran, Kah Yee Tham, Susanne Webster, Lauren Troy, Caitlin Fermoyle, Christin Monika Geis, Helen Jo, Alan Teoh, Laura Glenn, Nathan Mortimer, Kelly Mian Chen, Aruvi Thiruvarudchelvan, Tamera J Corte, Anthoulla Mohamudally","doi":"10.1136/spcare-2025-005745","DOIUrl":"10.1136/spcare-2025-005745","url":null,"abstract":"<p><strong>Objectives: </strong>To facilitate earlier access to palliative care (PC) for interstitial lung disease (ILD) patients, a combined ILD-PC clinic was launched at Royal Prince Alfred Hospital. We describe referral patterns and clinical practice 16 months post-implementation.</p><p><strong>Methods: </strong>A review of consecutive patients referred to the ILD-PC clinic was performed. Reasons for referral, PC interventions implemented and clinical outcomes were documented.</p><p><strong>Results: </strong>36 patients were referred to the ILD-PC clinic (75±8 years; 57% men). Diagnoses included idiopathic pulmonary fibrosis (49%), unclassifiable ILD (14%), chronic hypersensitivity pneumonitis (14%) and connective tissue disease-associated ILD (11%). Reasons for referral included high symptom burden (91%), advanced disease (66%) and disease progression (49%). PC management strategies encompassed symptom management (60%), referral to community PC services (40%), advance care planning (26%) and the prescription of opioids and benzodiazepines (23%). During the follow-up period, 23% of patients self-reported worsening symptoms, 40% demonstrated lung function decline, 11% died and 6% were listed for lung transplantation.</p><p><strong>Conclusions: </strong>The ILD-PC clinic incorporates a multidisciplinary, patient-centred approach to ILD care by enabling early access to symptom management, community services and advance care planning.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"215-218"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145039113","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}
Pub Date : 2025-12-23DOI: 10.1136/spcare-2024-005316
Grace Freeman-Spratt, Brendan Tan, Hossein Kasiri
Background: Palliative sedation therapy (PST) is used to treat refractory symptoms at the end of life. Phenobarbital is infrequently used as a third-line agent following unsuccessful symptom control with first-line and second-line agents. However, there is wide clinical and guideline variance in the use of phenobarbital, reflecting a gap in the literature.
Objective: The aim of this study is to summarise the current evidence and guidelines surrounding practices of phenobarbital use in PST and discuss areas for future investigations, specifically regarding route of administration, time to death, dosing and concurrent use of first-line and second-line PST.
Methods: Studies and guidelines on the use of phenobarbital in PST were retrieved from PubMed and Google and the reference list of identified papers through to August 2024.
Key findings: Limited case studies and retrospective audits have been conducted into the use of phenobarbital in PST. These studies and existing guidelines reflect a degree of variance specifically regarding recommendations about route of administration, dosing and use of first-line and second-line PST. Efficacy is not well reported. However, phenobarbital use appears to be safe and does not appear to impact time to survival.
Conclusion: Phenobarbital appears to have a safe and potentially efficacious role as a third-line agent in PST. Great variance exists with regards to optimal dosing and the concurrent use of first- and second-line PST agents. High-quality research and multicentre reviews are required to enhance the understanding of optimal phenobarbital use and encourage evidence-based practice in palliative medicine.
{"title":"Phenobarbital for palliative sedation therapy: narrative review.","authors":"Grace Freeman-Spratt, Brendan Tan, Hossein Kasiri","doi":"10.1136/spcare-2024-005316","DOIUrl":"10.1136/spcare-2024-005316","url":null,"abstract":"<p><strong>Background: </strong>Palliative sedation therapy (PST) is used to treat refractory symptoms at the end of life. Phenobarbital is infrequently used as a third-line agent following unsuccessful symptom control with first-line and second-line agents. However, there is wide clinical and guideline variance in the use of phenobarbital, reflecting a gap in the literature.</p><p><strong>Objective: </strong>The aim of this study is to summarise the current evidence and guidelines surrounding practices of phenobarbital use in PST and discuss areas for future investigations, specifically regarding route of administration, time to death, dosing and concurrent use of first-line and second-line PST.</p><p><strong>Methods: </strong>Studies and guidelines on the use of phenobarbital in PST were retrieved from PubMed and Google and the reference list of identified papers through to August 2024.</p><p><strong>Key findings: </strong>Limited case studies and retrospective audits have been conducted into the use of phenobarbital in PST. These studies and existing guidelines reflect a degree of variance specifically regarding recommendations about route of administration, dosing and use of first-line and second-line PST. Efficacy is not well reported. However, phenobarbital use appears to be safe and does not appear to impact time to survival.</p><p><strong>Conclusion: </strong>Phenobarbital appears to have a safe and potentially efficacious role as a third-line agent in PST. Great variance exists with regards to optimal dosing and the concurrent use of first- and second-line PST agents. High-quality research and multicentre reviews are required to enhance the understanding of optimal phenobarbital use and encourage evidence-based practice in palliative medicine.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"47-52"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145225058","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}
Pub Date : 2025-12-23DOI: 10.1136/spcare-2025-005878
Ruslan Zinchenko, Allan House, Sheila Hollins
{"title":"Decision-making and physician-assisted suicide: capacity assessment in the Terminally Ill Adults (End of Life) Bill is inadequate.","authors":"Ruslan Zinchenko, Allan House, Sheila Hollins","doi":"10.1136/spcare-2025-005878","DOIUrl":"10.1136/spcare-2025-005878","url":null,"abstract":"","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"66-68"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145353820","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}
Pub Date : 2025-12-23DOI: 10.1136/spcare-2025-005761
Masahiko Kusaba, Takuro Sakurai, Takuya Fukushima
Patients with brain tumours experience a variety of symptoms and side effects due to treatment, which can seriously affect their physical function and activities of daily living. These patients also face a greater physical burden than that experienced by patients with other cancers, and rehabilitation interventions are important. However, thus far, there have been no sufficient investigations of how rehabilitation interventions contribute to improving patients' physical function, activities of daily living and prognosis. Therefore, a narrative review was conducted to explore physical function and its influence on the prognosis of patients with brain tumours, as well as to investigate the effects of rehabilitation interventions in these patients. Patients with brain tumours experience a decline in physical function and physical activity, which are related to prognosis, over a long period of time. The effects of rehabilitation interventions for patients with brain tumours have been reported in randomised clinical trials and before-and-after studies. Patients with brain tumours experience long-term declines in physical function and activity; therefore, long-term rehabilitation interventions are important for these patients. Furthermore, although the effectiveness of these interventions in randomised clinical trials has been reported, most research is limited to patients with gliomas, and future investigation is required.
{"title":"Physical function and rehabilitation in patients with brain tumours: narrative review.","authors":"Masahiko Kusaba, Takuro Sakurai, Takuya Fukushima","doi":"10.1136/spcare-2025-005761","DOIUrl":"10.1136/spcare-2025-005761","url":null,"abstract":"<p><p>Patients with brain tumours experience a variety of symptoms and side effects due to treatment, which can seriously affect their physical function and activities of daily living. These patients also face a greater physical burden than that experienced by patients with other cancers, and rehabilitation interventions are important. However, thus far, there have been no sufficient investigations of how rehabilitation interventions contribute to improving patients' physical function, activities of daily living and prognosis. Therefore, a narrative review was conducted to explore physical function and its influence on the prognosis of patients with brain tumours, as well as to investigate the effects of rehabilitation interventions in these patients. Patients with brain tumours experience a decline in physical function and physical activity, which are related to prognosis, over a long period of time. The effects of rehabilitation interventions for patients with brain tumours have been reported in randomised clinical trials and before-and-after studies. Patients with brain tumours experience long-term declines in physical function and activity; therefore, long-term rehabilitation interventions are important for these patients. Furthermore, although the effectiveness of these interventions in randomised clinical trials has been reported, most research is limited to patients with gliomas, and future investigation is required.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"40-46"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145562608","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}
Pub Date : 2025-12-23DOI: 10.1136/spcare-2025-005692
Michelle Uchida Miwa, Carlos Eduardo Paiva, Ana Julia Sucupira Ferreira, Bianca Sakamoto Ribeiro Paiva
Objectives: To understand how dignity therapy (DT) helps patients in the search for meaning and resignification of life.
Methods: Qualitative, exploratory and descriptive study with DT interviews with 30 patients hospitalised in a palliative care unit. Narratives were analysed, categorised through Bardin's content analysis and complete speeches originated into legacy documents.
Results: Categories were adjusted to reflect the essence of each Dignity Therapy Question Protocol question, identifying nine main themes: biography and significant life experiences, moments of vitality and personal fulfilment, personal legacy and meaningful memories, significant roles and personal accomplishments, key achievements and personal pride, important messages and reflections for loved ones, hopes and dreams for loved ones, life lessons and wisdom to share, and advice and guidance for loved ones. Subcategories related mainly to the importance of family and friends, childhood memories, achievements related to graduations, professional career, and material assets, births, parenting, child education and values transmission, gratitude, forgiveness, faith and spirituality, search for meaning in illness, the significance of the present moment, impermanence, social and artistic interactions, farewells, cause-and-effect actions, empathy and character.
Conclusion: This study identified intrinsic topics and unique insights, providing an understanding of how DT helps restore or redefine purpose and meaning amid life-threatening illness.
{"title":"Dignity therapy in cancer palliative care: meaning and resignification of life-a qualitative study.","authors":"Michelle Uchida Miwa, Carlos Eduardo Paiva, Ana Julia Sucupira Ferreira, Bianca Sakamoto Ribeiro Paiva","doi":"10.1136/spcare-2025-005692","DOIUrl":"10.1136/spcare-2025-005692","url":null,"abstract":"<p><strong>Objectives: </strong>To understand how dignity therapy (DT) helps patients in the search for meaning and resignification of life.</p><p><strong>Methods: </strong>Qualitative, exploratory and descriptive study with DT interviews with 30 patients hospitalised in a palliative care unit. Narratives were analysed, categorised through Bardin's content analysis and complete speeches originated into legacy documents.</p><p><strong>Results: </strong>Categories were adjusted to reflect the essence of each Dignity Therapy Question Protocol question, identifying nine main themes: biography and significant life experiences, moments of vitality and personal fulfilment, personal legacy and meaningful memories, significant roles and personal accomplishments, key achievements and personal pride, important messages and reflections for loved ones, hopes and dreams for loved ones, life lessons and wisdom to share, and advice and guidance for loved ones. Subcategories related mainly to the importance of family and friends, childhood memories, achievements related to graduations, professional career, and material assets, births, parenting, child education and values transmission, gratitude, forgiveness, faith and spirituality, search for meaning in illness, the significance of the present moment, impermanence, social and artistic interactions, farewells, cause-and-effect actions, empathy and character.</p><p><strong>Conclusion: </strong>This study identified intrinsic topics and unique insights, providing an understanding of how DT helps restore or redefine purpose and meaning amid life-threatening illness.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"239-242"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144538732","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}
Pub Date : 2025-12-23DOI: 10.1136/spcare-2025-005779
Laura Lamfre, María Coller, Clément Meier, Claudia Fischer, Vilma Adriana Tripodoro
Objective: To estimate the economic costs of informal caregiving at the end of life in Argentina, incorporating both direct and indirect costs, and to analyse their distribution through a gender equity lens.
Methods: The study is part of the international iLIVE project and includes data from 153 informal caregivers of patients with life-limiting illnesses in Argentina. Costs were estimated using both the opportunity cost and proxy-good methods. Information was collected at baseline and at the 30-day follow-up using the Caregiver Impact Questionnaire, which measured the time spent on caregiving activities, work productivity losses and compensation. Gender-disaggregated analyses were conducted.
Results: Caregivers provided an average of 57 hours of informal care per week and lost 25 hours of paid work. Emotional support represented the largest share of time (36%), followed by household tasks (25%), practical assistance (22%) and personal care (17%). Using the opportunity cost method, societal costs averaged US$29 293 at baseline and US$18 851 at follow-up. The estimated annual costs using the proxy-good method were US$32 065 at baseline and US$21 595 at follow-up. Women consistently incurred higher costs than men, with a female-to-male cost ratio of 2.0 for unpaid care. Nearly all caregivers (98%) received no financial compensation.
Conclusion: Informal caregiving at the end of life entails a considerable and often overlooked economic burden in Argentina, disproportionately affecting women. Recognising and valuing this work in economic evaluations and public policy is essential to promote gender equity and build more sustainable health systems.
{"title":"Informal end-of-life care-hidden costs: multi-method analysis.","authors":"Laura Lamfre, María Coller, Clément Meier, Claudia Fischer, Vilma Adriana Tripodoro","doi":"10.1136/spcare-2025-005779","DOIUrl":"10.1136/spcare-2025-005779","url":null,"abstract":"<p><strong>Objective: </strong>To estimate the economic costs of informal caregiving at the end of life in Argentina, incorporating both direct and indirect costs, and to analyse their distribution through a gender equity lens.</p><p><strong>Methods: </strong>The study is part of the international iLIVE project and includes data from 153 informal caregivers of patients with life-limiting illnesses in Argentina. Costs were estimated using both the opportunity cost and proxy-good methods. Information was collected at baseline and at the 30-day follow-up using the Caregiver Impact Questionnaire, which measured the time spent on caregiving activities, work productivity losses and compensation. Gender-disaggregated analyses were conducted.</p><p><strong>Results: </strong>Caregivers provided an average of 57 hours of informal care per week and lost 25 hours of paid work. Emotional support represented the largest share of time (36%), followed by household tasks (25%), practical assistance (22%) and personal care (17%). Using the opportunity cost method, societal costs averaged US$29 293 at baseline and US$18 851 at follow-up. The estimated annual costs using the proxy-good method were US$32 065 at baseline and US$21 595 at follow-up. Women consistently incurred higher costs than men, with a female-to-male cost ratio of 2.0 for unpaid care. Nearly all caregivers (98%) received no financial compensation.</p><p><strong>Conclusion: </strong>Informal caregiving at the end of life entails a considerable and often overlooked economic burden in Argentina, disproportionately affecting women. Recognising and valuing this work in economic evaluations and public policy is essential to promote gender equity and build more sustainable health systems.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"122-129"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145205566","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}