Pub Date : 2025-11-04DOI: 10.1016/j.jpainsymman.2025.10.032
Meaghann S Weaver, Kenneth A Berkowitz
As a contingency standard of care, telemedicine use surged during the COVID-19 pandemic. The Medicare telehealth flexibilities introduced during the COVID-19 pandemic expired in September 2025. Any ongoing sustained pivot to telemedicine warrants purposeful attentiveness to ethical considerations and not just technology use as an end unto itself. Telemedicine has the potential to complement face-to-face care practices and enhance clinical interactions when its use is based on shared values. Values such as access, equity, justice, compassion, autonomy, and dignity warrant thoughtful use of telemedicine. Patients and families need to be able to trust that clinicians and health systems will place patient welfare and shared values above technical convenience. As demonstrated in this case description, upholding values fundamental to the practice of medicine in telemedicine can enhance patient connection and foster trustworthy postpandemic practices.
{"title":"Values Considerations in Telemedicine: Pause Before Shifting.","authors":"Meaghann S Weaver, Kenneth A Berkowitz","doi":"10.1016/j.jpainsymman.2025.10.032","DOIUrl":"10.1016/j.jpainsymman.2025.10.032","url":null,"abstract":"<p><p>As a contingency standard of care, telemedicine use surged during the COVID-19 pandemic. The Medicare telehealth flexibilities introduced during the COVID-19 pandemic expired in September 2025. Any ongoing sustained pivot to telemedicine warrants purposeful attentiveness to ethical considerations and not just technology use as an end unto itself. Telemedicine has the potential to complement face-to-face care practices and enhance clinical interactions when its use is based on shared values. Values such as access, equity, justice, compassion, autonomy, and dignity warrant thoughtful use of telemedicine. Patients and families need to be able to trust that clinicians and health systems will place patient welfare and shared values above technical convenience. As demonstrated in this case description, upholding values fundamental to the practice of medicine in telemedicine can enhance patient connection and foster trustworthy postpandemic practices.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145459106","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-04DOI: 10.1016/j.jpainsymman.2025.10.026
Rinat Nissim, Shenhab Zaig, Paige Chu, Nazanin Nouriany, Anna T Santiago, Jennifer Croke, Breffni Hannon
Context: Family caregivers of individuals with advanced cancer face significant psychological and practical burdens, yet support for them remains limited.
Objectives: This study aimed to develop and pilot a nurse-led screening and response protocol to address unmet support needs of family caregivers in an outpatient palliative care clinic (OPCC).
Methods: English-speaking adult family caregivers of patients attending an (OPCC) in a tertiary cancer center in Canada were recruited. Participants completed repeated needs screenings and engaged in follow-up nurse consultations, offering a tailored response. A satisfaction with care scale was administered at baseline and six months, and qualitative interviews explored participants' experiences.
Results: Of 31 family caregivers enrolled, all completed needs screening and a follow-up consultation at least once, and 61% completed both baseline and six-month measures. A pre-post analysis demonstrated a statistically significant improvement in satisfaction with psychosocial care. In qualitative interviews with a subset of 11 participants, family caregivers highlighted the value of receiving support independently from the patient, the acknowledgment of their needs as caregivers, having guidance to resolve concerns, and the facilitation of end-of-life planning.
Conclusion: Routine screening and response protocols for family caregivers may help facilitate timely and tailored support. Early implementation may enhance recruitment and engagement.
{"title":"\"I Had a Needle, But This Program Gave Me the Thread\": A Caregiver Screening and Response Protocol.","authors":"Rinat Nissim, Shenhab Zaig, Paige Chu, Nazanin Nouriany, Anna T Santiago, Jennifer Croke, Breffni Hannon","doi":"10.1016/j.jpainsymman.2025.10.026","DOIUrl":"10.1016/j.jpainsymman.2025.10.026","url":null,"abstract":"<p><strong>Context: </strong>Family caregivers of individuals with advanced cancer face significant psychological and practical burdens, yet support for them remains limited.</p><p><strong>Objectives: </strong>This study aimed to develop and pilot a nurse-led screening and response protocol to address unmet support needs of family caregivers in an outpatient palliative care clinic (OPCC).</p><p><strong>Methods: </strong>English-speaking adult family caregivers of patients attending an (OPCC) in a tertiary cancer center in Canada were recruited. Participants completed repeated needs screenings and engaged in follow-up nurse consultations, offering a tailored response. A satisfaction with care scale was administered at baseline and six months, and qualitative interviews explored participants' experiences.</p><p><strong>Results: </strong>Of 31 family caregivers enrolled, all completed needs screening and a follow-up consultation at least once, and 61% completed both baseline and six-month measures. A pre-post analysis demonstrated a statistically significant improvement in satisfaction with psychosocial care. In qualitative interviews with a subset of 11 participants, family caregivers highlighted the value of receiving support independently from the patient, the acknowledgment of their needs as caregivers, having guidance to resolve concerns, and the facilitation of end-of-life planning.</p><p><strong>Conclusion: </strong>Routine screening and response protocols for family caregivers may help facilitate timely and tailored support. Early implementation may enhance recruitment and engagement.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145459052","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-04DOI: 10.1016/j.jpainsymman.2025.10.027
Mellar P Davis, Kari Bohlke, Andrew Davies
Opioid conversion, also known as opioid rotation or switching, is a critical strategy in cancer pain management, necessitated in up to 40% of patients undergoing opioid therapy. In 2025, five leading international organizations-MASCC, ASCO, AAHPM, HPNA, and NICSO-collaborated to produce the first global consensus guideline on opioid conversion in adults with cancer. This review provides clinical insights into the guideline's recommendations, emphasizing individualized care, safety, and evidence-informed practice. Key components include comprehensive preconversion assessment, consensus-based conversion ratios, and vigilant postconversion monitoring. The guideline challenges traditional dose-reduction protocols and addresses controversial areas such as methadone use, transdermal fentanyl conversion, and bidirectional asymmetry. Broader considerations include socioeconomic disparities, stigma, pharmacogenetics, and geriatric-specific concerns. While the guideline offers a robust framework for safer opioid transitions, limitations include reliance on heterogeneous data and the need for clinician expertise. Future directions call for expanded access, education, and integration of personalized medicine approaches to optimize cancer pain management.
{"title":"Opioid Conversion in Adults With Cancer: MASCC-ASCO-AAHPM-HPNA-NICSO Guideline Clinical Insights.","authors":"Mellar P Davis, Kari Bohlke, Andrew Davies","doi":"10.1016/j.jpainsymman.2025.10.027","DOIUrl":"10.1016/j.jpainsymman.2025.10.027","url":null,"abstract":"<p><p>Opioid conversion, also known as opioid rotation or switching, is a critical strategy in cancer pain management, necessitated in up to 40% of patients undergoing opioid therapy. In 2025, five leading international organizations-MASCC, ASCO, AAHPM, HPNA, and NICSO-collaborated to produce the first global consensus guideline on opioid conversion in adults with cancer. This review provides clinical insights into the guideline's recommendations, emphasizing individualized care, safety, and evidence-informed practice. Key components include comprehensive preconversion assessment, consensus-based conversion ratios, and vigilant postconversion monitoring. The guideline challenges traditional dose-reduction protocols and addresses controversial areas such as methadone use, transdermal fentanyl conversion, and bidirectional asymmetry. Broader considerations include socioeconomic disparities, stigma, pharmacogenetics, and geriatric-specific concerns. While the guideline offers a robust framework for safer opioid transitions, limitations include reliance on heterogeneous data and the need for clinician expertise. Future directions call for expanded access, education, and integration of personalized medicine approaches to optimize cancer pain management.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145459056","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Objective: The aim of this umbrella review is to synthesize pooled prevalence of existing evidence on depressive morbidity among informal cancer caregivers.
Method: This umbrella review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, and the protocol was registered in PROSPERO (CRD420251032522). A comprehensive search of major databases was performed to identify relevant studies. Predefined inclusion and exclusion criteria were applied. The corrected covered area (CCA) was calculated to assess overlap, and the methodological quality of included reviews was evaluated using the AMSTAR 2 tool.
Results: This umbrella review included four systematic reviews and meta-analyses, comprising a total of 160 primary studies with 40,605 participants worldwide. The pooled global prevalence of depression among informal caregivers of cancer patients was 38% (95% confidence intervals, 95% CI: 28%-48%). However, prevalence estimates varied widely, ranging from 4 to 55%, likely due to differences in the depression assessment tools used across studies.
Conclusion and recommendation: In conclusion, this review reveals a high prevalence of depression among informal caregivers of cancer patients a burden comparable to or exceeding that observed in other chronic illnesses and global crises such as the COVID-19 pandemic. Integrating routine mental health screening using validated tools such as the CES-D or PHQ-9 into oncology care is essential. Structured interventions including counseling, psych-education, and respite care should be embedded within care pathways. Future research should prioritize standardized assessment tools and caregiver-focused strategies to enhance comparability and guide best practices. Policymakers must invest in caregiver mental health to ensure sustainable and compassionate cancer care systems.
{"title":"Burden Beyond the Bedside: A Global Synthesis of Depression in Informal Cancer Caregivers: An Umbrella Review.","authors":"Tesfaye Engdaw Habtie, Molalign Aligaz Adisu, Sefineh Fenta Feleke, Tegene Atamenta Kitaw","doi":"10.1016/j.jpainsymman.2025.10.033","DOIUrl":"10.1016/j.jpainsymman.2025.10.033","url":null,"abstract":"<p><strong>Objective: </strong>The aim of this umbrella review is to synthesize pooled prevalence of existing evidence on depressive morbidity among informal cancer caregivers.</p><p><strong>Method: </strong>This umbrella review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, and the protocol was registered in PROSPERO (CRD420251032522). A comprehensive search of major databases was performed to identify relevant studies. Predefined inclusion and exclusion criteria were applied. The corrected covered area (CCA) was calculated to assess overlap, and the methodological quality of included reviews was evaluated using the AMSTAR 2 tool.</p><p><strong>Results: </strong>This umbrella review included four systematic reviews and meta-analyses, comprising a total of 160 primary studies with 40,605 participants worldwide. The pooled global prevalence of depression among informal caregivers of cancer patients was 38% (95% confidence intervals, 95% CI: 28%-48%). However, prevalence estimates varied widely, ranging from 4 to 55%, likely due to differences in the depression assessment tools used across studies.</p><p><strong>Conclusion and recommendation: </strong>In conclusion, this review reveals a high prevalence of depression among informal caregivers of cancer patients a burden comparable to or exceeding that observed in other chronic illnesses and global crises such as the COVID-19 pandemic. Integrating routine mental health screening using validated tools such as the CES-D or PHQ-9 into oncology care is essential. Structured interventions including counseling, psych-education, and respite care should be embedded within care pathways. Future research should prioritize standardized assessment tools and caregiver-focused strategies to enhance comparability and guide best practices. Policymakers must invest in caregiver mental health to ensure sustainable and compassionate cancer care systems.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145459063","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-31DOI: 10.1016/j.jpainsymman.2025.10.017
Maria Cassidy, Sarah Longwell, Salma Khanche
Objectives: Clinical induction for resident doctors rotating into new posts is vital for patient safety. Hospices provide repeated induction sessions to individual rotating doctors with limited resources. We proposed that a shared online learning resource could improve efficiency.
Results: Six of nine hospices surveyed responded; the majority reported clinical induction is resource intensive and were interested in an online resource. 22 resident doctors completed the pilot resource. 50% completed a feedback survey; 100% respondents rated the resource good or excellent and 100% agreed it met their learning needs. 102 users have now accessed the resource; knowledge check quiz scores are 74%-86%, with at least 20% improvement in confidence scores post resource completion.
Conclusion: We have successfully developed a re-usable online learning resource for more efficient clinical induction within Marie Curie hospices. We propose that this could be adopted by other hospices.
Pub Date : 2025-10-30DOI: 10.1016/j.jpainsymman.2025.10.015
William B Alexander, Eric D Hansen, Brian T Anderson, Ali John Zarrabi, Andrew H Rogers, Gregory Loewen, Zachary R Ficarro, Margaret H Alexander, Dylan Schaefer, Amy A Case
Context: Meaning is a primary existential concern in those with advanced illnesses and functions as an important coping mechanism. Loss of meaning contributes to existential distress, and, in particular, may manifest as demoralization, a syndrome of poor coping that is associated with negative outcomes. Psychedelics are unique psychoactive compounds that, among other properties, are proposed to enhance meaning. In the palliative setting, psychedelic therapies are under investigation for existential distress, including demoralization.
Objective: To synthesize the literature on meaning in palliative care, including the clinical impact of loss of meaning, particularly demoralization, and evidence for proposed interventions including existential psychological interventions and psychedelic therapies.
Methods: We conducted a narrative review based on a structured search within Pubmed. Articles were screened for those addressing prespecified questions derived from our objectives, and results were synthesized in narrative format.
Results: Loss of meaning is a hallmark feature of demoralization syndrome, a prevalent and distinct condition linked with diminished quality of life, increased symptom burden, and increased suicide risk. Existential psychological interventions improve numerous psychosocial outcomes, although evidence for their efficacy in demoralization is limited. In psychedelic therapy, meaning-making is a typical feature, and existential interventions are commonly integrated. Finally, early clinical trial data indicate that psychedelic therapies show promise for existential distress, including demoralization.
Conclusions: Novel approaches are needed to address existential distress, especially when manifested as demoralization. Psychedelic therapy is a promising combined pharmacologic and psychological intervention that promotes meaning-making and shows potential for improving demoralization, warranting further investigation.
{"title":"Meaning and Psychedelics in Palliative Care: A Narrative Review.","authors":"William B Alexander, Eric D Hansen, Brian T Anderson, Ali John Zarrabi, Andrew H Rogers, Gregory Loewen, Zachary R Ficarro, Margaret H Alexander, Dylan Schaefer, Amy A Case","doi":"10.1016/j.jpainsymman.2025.10.015","DOIUrl":"10.1016/j.jpainsymman.2025.10.015","url":null,"abstract":"<p><strong>Context: </strong>Meaning is a primary existential concern in those with advanced illnesses and functions as an important coping mechanism. Loss of meaning contributes to existential distress, and, in particular, may manifest as demoralization, a syndrome of poor coping that is associated with negative outcomes. Psychedelics are unique psychoactive compounds that, among other properties, are proposed to enhance meaning. In the palliative setting, psychedelic therapies are under investigation for existential distress, including demoralization.</p><p><strong>Objective: </strong>To synthesize the literature on meaning in palliative care, including the clinical impact of loss of meaning, particularly demoralization, and evidence for proposed interventions including existential psychological interventions and psychedelic therapies.</p><p><strong>Methods: </strong>We conducted a narrative review based on a structured search within Pubmed. Articles were screened for those addressing prespecified questions derived from our objectives, and results were synthesized in narrative format.</p><p><strong>Results: </strong>Loss of meaning is a hallmark feature of demoralization syndrome, a prevalent and distinct condition linked with diminished quality of life, increased symptom burden, and increased suicide risk. Existential psychological interventions improve numerous psychosocial outcomes, although evidence for their efficacy in demoralization is limited. In psychedelic therapy, meaning-making is a typical feature, and existential interventions are commonly integrated. Finally, early clinical trial data indicate that psychedelic therapies show promise for existential distress, including demoralization.</p><p><strong>Conclusions: </strong>Novel approaches are needed to address existential distress, especially when manifested as demoralization. Psychedelic therapy is a promising combined pharmacologic and psychological intervention that promotes meaning-making and shows potential for improving demoralization, warranting further investigation.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145421675","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-30DOI: 10.1016/j.jpainsymman.2025.10.016
Vilma A Tripodoro, Pedro Pérez-Cruz, Marina Khoury, Martha Ximena León, José Mario López Saca, Verónica Veloso, Ángela Acero, Sebastián Soto-Guerrero, Marco Rodríguez, Michelle Uchida, Ida Korfage, Agnes van der Heide
Context: The COVID-19 pandemic exposed critical weaknesses in end-of-life care (EOLC), particularly in Latin America, where fragmented health systems and inequities intensified suffering.
Objectives: To examine bereaved relatives' perceptions of EOLC during the pandemic in five Latin American countries, identify predictors of perceived adequacy, and assess alignment with the Core Outcome Set (COS) for best care for the dying person, a consensus-based set of patient-centered outcomes for end-of-life care.
Methods: A cross-sectional online survey of bereaved relatives was conducted in Argentina, Brazil, Chile, Colombia, and El Salvador (2021-2023) using an adapted iCODE questionnaire (Care of the Dying Evaluation). The primary outcome, perceived "adequate care" in the last 48 hours of life, was based on two iCODE items. Logistic regression identified associated factors.
Results: Among 1,125 respondents, 51% perceived care as adequate, varying from 45% in Argentina and Colombia to 81% in El Salvador (P < 0.001). Independent predictors included personal care support (P < 0.001), emotional support (P < 0.001), trust in professionals (P < 0.001), symptom relief (P ≤ 0.001), effective communication (P = 0.012), and family involvement in decision-making (P = 0.045). COVID-19 restrictions were negatively associated with perceived adequacy. Alignment of our findings with the COS domains revealed persistent gaps in spiritual support, shared decision-making, and communication.
Conclusion: Perceptions of EOLC adequacy during the pandemic varied across Latin America. Relational, emotional, and physical aspects of care strongly influenced relatives' assessments. The COS offers a practical framework to identify and address care gaps. Its adoption could promote holistic, culturally sensitive EOLC, essential to improving care in the region.
{"title":"Beyond the Pandemic: End-of-Life Care Lessons From Latin America to Inform Future Health Emergencies.","authors":"Vilma A Tripodoro, Pedro Pérez-Cruz, Marina Khoury, Martha Ximena León, José Mario López Saca, Verónica Veloso, Ángela Acero, Sebastián Soto-Guerrero, Marco Rodríguez, Michelle Uchida, Ida Korfage, Agnes van der Heide","doi":"10.1016/j.jpainsymman.2025.10.016","DOIUrl":"10.1016/j.jpainsymman.2025.10.016","url":null,"abstract":"<p><strong>Context: </strong>The COVID-19 pandemic exposed critical weaknesses in end-of-life care (EOLC), particularly in Latin America, where fragmented health systems and inequities intensified suffering.</p><p><strong>Objectives: </strong>To examine bereaved relatives' perceptions of EOLC during the pandemic in five Latin American countries, identify predictors of perceived adequacy, and assess alignment with the Core Outcome Set (COS) for best care for the dying person, a consensus-based set of patient-centered outcomes for end-of-life care.</p><p><strong>Methods: </strong>A cross-sectional online survey of bereaved relatives was conducted in Argentina, Brazil, Chile, Colombia, and El Salvador (2021-2023) using an adapted iCODE questionnaire (Care of the Dying Evaluation). The primary outcome, perceived \"adequate care\" in the last 48 hours of life, was based on two iCODE items. Logistic regression identified associated factors.</p><p><strong>Results: </strong>Among 1,125 respondents, 51% perceived care as adequate, varying from 45% in Argentina and Colombia to 81% in El Salvador (P < 0.001). Independent predictors included personal care support (P < 0.001), emotional support (P < 0.001), trust in professionals (P < 0.001), symptom relief (P ≤ 0.001), effective communication (P = 0.012), and family involvement in decision-making (P = 0.045). COVID-19 restrictions were negatively associated with perceived adequacy. Alignment of our findings with the COS domains revealed persistent gaps in spiritual support, shared decision-making, and communication.</p><p><strong>Conclusion: </strong>Perceptions of EOLC adequacy during the pandemic varied across Latin America. Relational, emotional, and physical aspects of care strongly influenced relatives' assessments. The COS offers a practical framework to identify and address care gaps. Its adoption could promote holistic, culturally sensitive EOLC, essential to improving care in the region.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145421692","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-28DOI: 10.1016/j.jpainsymman.2025.10.019
Korijna Valenti, Mary Cleveland, Kim Hamrick, Jasmine Vickers, Macy L Stockdill, Jennifer Hicks, Rodney O Tucker, Chao-Hui Sylvia Huang
Background: The Heartbeat Project (HBP) is a music therapist-led legacy intervention that incorporates patients' heartbeat recordings into personalized audio keepsakes. While anecdotally described as meaningful, few studies have explored caregiver outcomes after participation.
Objective: To describe implementation characteristics and caregiver-reported outcomes of the HBP to understand caregiver perceptions and inform best practices in palliative care.
Design: This mixed-methods study documented song genre preferences at implementation. A 16-item survey assessed caregiver engagement, satisfaction, and perceived emotional impact. Descriptive statistics and thematic analysis were applied to survey responses and qualitative feedback.
Setting/subjects: Patients receiving palliative care (n = 81) and caregivers (n = 29) were recruited from the University of Alabama at Birmingham's Palliative and Comfort Care Unit.
Results: Of 81 bereaved caregivers, 30 responded (36.7%), including both adult and pediatric caregivers. Most reported being very satisfied and described the keepsake as comforting, meaningful, and helpful during grief. Ratings for "comfort," "helpfulness," and "meaningfulness" were consistently high (mean scores: 9.14-9.96/10). Qualitative themes included emotional resonance, legacy preservation, and appreciation for personalized care.
Conclusion: The HBP was highly acceptable to caregivers and perceived as emotionally supportive. Findings suggest that legacy-based music therapy interventions may enhance grief coping across diverse palliative care settings.
{"title":"My Heart Will Go On: Caregiver Experiences of a Legacy Intervention in Acute Palliative Care.","authors":"Korijna Valenti, Mary Cleveland, Kim Hamrick, Jasmine Vickers, Macy L Stockdill, Jennifer Hicks, Rodney O Tucker, Chao-Hui Sylvia Huang","doi":"10.1016/j.jpainsymman.2025.10.019","DOIUrl":"10.1016/j.jpainsymman.2025.10.019","url":null,"abstract":"<p><strong>Background: </strong>The Heartbeat Project (HBP) is a music therapist-led legacy intervention that incorporates patients' heartbeat recordings into personalized audio keepsakes. While anecdotally described as meaningful, few studies have explored caregiver outcomes after participation.</p><p><strong>Objective: </strong>To describe implementation characteristics and caregiver-reported outcomes of the HBP to understand caregiver perceptions and inform best practices in palliative care.</p><p><strong>Design: </strong>This mixed-methods study documented song genre preferences at implementation. A 16-item survey assessed caregiver engagement, satisfaction, and perceived emotional impact. Descriptive statistics and thematic analysis were applied to survey responses and qualitative feedback.</p><p><strong>Setting/subjects: </strong>Patients receiving palliative care (n = 81) and caregivers (n = 29) were recruited from the University of Alabama at Birmingham's Palliative and Comfort Care Unit.</p><p><strong>Results: </strong>Of 81 bereaved caregivers, 30 responded (36.7%), including both adult and pediatric caregivers. Most reported being very satisfied and described the keepsake as comforting, meaningful, and helpful during grief. Ratings for \"comfort,\" \"helpfulness,\" and \"meaningfulness\" were consistently high (mean scores: 9.14-9.96/10). Qualitative themes included emotional resonance, legacy preservation, and appreciation for personalized care.</p><p><strong>Conclusion: </strong>The HBP was highly acceptable to caregivers and perceived as emotionally supportive. Findings suggest that legacy-based music therapy interventions may enhance grief coping across diverse palliative care settings.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145409398","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-28DOI: 10.1016/j.jpainsymman.2025.10.020
Christina L Rush, Ethan G Lester, Kush Mehta, Morgan Seward, Ana-Maria Vranceanu
Context: Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neurodegenerative disease. Nearly half of people with ALS (pALS) and their care partners experience significant emotional distress, particularly around the time of diagnosis, yet behavioral health needs are inconsistently addressed.
Objectives: To explore perspectives of pALS and care partners regarding emotional distress, behavioral health needs and preferences, and access to behavioral health resources within their clinics and communities.
Methods: 134 participants (88 pALS and 46 care partners) were recruited through ALS Y nonprofit listservs to complete an online survey developed by the study team. The survey included closed- and open-ended questions assessing behavioral health history, current needs, access to services, and preferred care approaches.
Results: Participants (59.7%, n = 80) self-reported lack of behavioral health screening, 47.7% (n = 42) of pALS reported new behavioral health diagnoses after ALS diagnosis. 46 (52.3%) of pALS and 32 (69.6%) of care partner proxies expressed a need for behavioral health care at time of ALS diagnosis and were open to a range of provider types. Open-ended responses noted limited time, need for ALS-tailored behavioral health care, and feeling overwhelmed postdiagnosis.
Conclusion: Findings highlight current gaps and opportunity to enhance behavioral health within interdisciplinary care. Embedding brief, flexible interventions delivered by a range of trained providers-particularly at key transitions-may support emotional well-being, care engagement, and quality of life for pALS and care partners.
{"title":"Patient and Care-Partner Voices in ALS: Shaping Behavioral Health and Collaborative Care.","authors":"Christina L Rush, Ethan G Lester, Kush Mehta, Morgan Seward, Ana-Maria Vranceanu","doi":"10.1016/j.jpainsymman.2025.10.020","DOIUrl":"10.1016/j.jpainsymman.2025.10.020","url":null,"abstract":"<p><strong>Context: </strong>Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neurodegenerative disease. Nearly half of people with ALS (pALS) and their care partners experience significant emotional distress, particularly around the time of diagnosis, yet behavioral health needs are inconsistently addressed.</p><p><strong>Objectives: </strong>To explore perspectives of pALS and care partners regarding emotional distress, behavioral health needs and preferences, and access to behavioral health resources within their clinics and communities.</p><p><strong>Methods: </strong>134 participants (88 pALS and 46 care partners) were recruited through ALS Y nonprofit listservs to complete an online survey developed by the study team. The survey included closed- and open-ended questions assessing behavioral health history, current needs, access to services, and preferred care approaches.</p><p><strong>Results: </strong>Participants (59.7%, n = 80) self-reported lack of behavioral health screening, 47.7% (n = 42) of pALS reported new behavioral health diagnoses after ALS diagnosis. 46 (52.3%) of pALS and 32 (69.6%) of care partner proxies expressed a need for behavioral health care at time of ALS diagnosis and were open to a range of provider types. Open-ended responses noted limited time, need for ALS-tailored behavioral health care, and feeling overwhelmed postdiagnosis.</p><p><strong>Conclusion: </strong>Findings highlight current gaps and opportunity to enhance behavioral health within interdisciplinary care. Embedding brief, flexible interventions delivered by a range of trained providers-particularly at key transitions-may support emotional well-being, care engagement, and quality of life for pALS and care partners.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145409354","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-28DOI: 10.1016/j.jpainsymman.2025.10.014
Holly Tate, Lana Ferguson
Context: Pain, agitation, and other refractory symptoms occur commonly in palliative patients. Dexmedetomidine has anxiolytic, analgesic, and sedating effects; however, its use remains uncommon in palliative care. In New Zealand, the Hospice Waikato Inpatient Unit has increasingly used dexmedetomidine since 2019 when symptoms are refractory and deep sedation is not desirable due to patient and prognostic factors.
Objectives: To describe use of subcutaneous dexmedetomidine infusions in the Hospice Waikato Inpatient Unit, noting patient demographics, treatment characteristics, safety factors, and effectiveness.
Methods: A retrospective, observational review of clinical records, using descriptive statistics.
Results: Twenty-six infusions in 25 adult patients (≥18 years) were analyzed, of whom 24 (96%) had malignancy. Refractory pain (n=24, 92%) and agitated delirium (n = 13, 50%) were the commonest indications for dexmedetomidine. Median duration was 4 days (interquartile range 2.3-8.8 days). Infusion rates ranged between 0.2 and 1.4 mcg/kg/hr. Side effects occurred in 15 infusions (58%) but none required cessation. Potentiation of opioids, causing sedation, occurred once (4% of infusion events). Hemodynamic monitoring was seldom performed. Median change in Richmond Agitation-Sedation Score (RASS-PAL) over 24 hours was -2 (P = 0.0001) and clinicians perceived dexmedetomidine as effective within 24 hours in 23 cases (88%). Opioid and midazolam requirements often reduced but this effect was less pronounced beyond 24 hours.
Conclusion: Dexmedetomidine subcutaneous infusion appears to be well-tolerated, safe, and effective in managing pain and agitation, while maintaining patients' ability to interact with family. It may avoid the need for palliative sedation therapy (PST) in some cases.
{"title":"Subcutaneous Dexmedetomidine for Refractory Symptoms in a Hospice Inpatient Unit.","authors":"Holly Tate, Lana Ferguson","doi":"10.1016/j.jpainsymman.2025.10.014","DOIUrl":"10.1016/j.jpainsymman.2025.10.014","url":null,"abstract":"<p><strong>Context: </strong>Pain, agitation, and other refractory symptoms occur commonly in palliative patients. Dexmedetomidine has anxiolytic, analgesic, and sedating effects; however, its use remains uncommon in palliative care. In New Zealand, the Hospice Waikato Inpatient Unit has increasingly used dexmedetomidine since 2019 when symptoms are refractory and deep sedation is not desirable due to patient and prognostic factors.</p><p><strong>Objectives: </strong>To describe use of subcutaneous dexmedetomidine infusions in the Hospice Waikato Inpatient Unit, noting patient demographics, treatment characteristics, safety factors, and effectiveness.</p><p><strong>Methods: </strong>A retrospective, observational review of clinical records, using descriptive statistics.</p><p><strong>Results: </strong>Twenty-six infusions in 25 adult patients (≥18 years) were analyzed, of whom 24 (96%) had malignancy. Refractory pain (n=24, 92%) and agitated delirium (n = 13, 50%) were the commonest indications for dexmedetomidine. Median duration was 4 days (interquartile range 2.3-8.8 days). Infusion rates ranged between 0.2 and 1.4 mcg/kg/hr. Side effects occurred in 15 infusions (58%) but none required cessation. Potentiation of opioids, causing sedation, occurred once (4% of infusion events). Hemodynamic monitoring was seldom performed. Median change in Richmond Agitation-Sedation Score (RASS-PAL) over 24 hours was -2 (P = 0.0001) and clinicians perceived dexmedetomidine as effective within 24 hours in 23 cases (88%). Opioid and midazolam requirements often reduced but this effect was less pronounced beyond 24 hours.</p><p><strong>Conclusion: </strong>Dexmedetomidine subcutaneous infusion appears to be well-tolerated, safe, and effective in managing pain and agitation, while maintaining patients' ability to interact with family. It may avoid the need for palliative sedation therapy (PST) in some cases.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145409387","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}