Kathleen M Akgün, Ling Han, Yan Zhan, Erica A Abel, Shelli L Feder
{"title":"Agreement Between Self-Reported and Proxy-Reported Pain in Veterans With Advanced Heart Failure.","authors":"Kathleen M Akgün, Ling Han, Yan Zhan, Erica A Abel, Shelli L Feder","doi":"10.1177/10499091251364232","DOIUrl":"10.1177/10499091251364232","url":null,"abstract":"<p><p>BackgroundSelf-reported pain is frequently reported among patients with advanced heart failure (aHF). Agreement between patients' pain assessment and their proxies have shown inconsistent results. We examined agreement between documented patient self-report and family-reported pain scores for Veterans with aHF towards the end of life (EOL).MethodsWe conducted a retrospective cohort study of aHF patients who died between 2018-2020 while inpatient at one of 83 Veterans Affairs Medical Centers (VAMC) and whose families completed a Beavered Family Survey (BFS) (n = 1045). BFS is a nationally distributed questionnaire assessing family-reported quality of inpatient EOL care at VAMCs. Averaged daily patient-reported numeric rating scale (NRS) pain scores over the last 30 and 7-days of life were categorized as: no pain (NRS = 0), mild (NRS = 1-3), moderate (NRS = 4-6), and severe (NRS = 7-10). NRS categories were compared to family-reported pain using responses to two BFS items (ever pain; some pain). Agreement between NRS categories and family-reported pain was assessed using Cohen's kappa coefficient statistic.ResultsThere was moderate agreement between 30-day NRS severe pain and BFS ever pain and fair agreement for the last 7 days. Mild pain showed no-to-slight agreement compared to both BFS pain outcomes. Substantial or complete agreement was not identified between NRS and BFS. Agreement was generally stronger for last 30 vs 7 days of life.ConclusionsAgreement between aHF patients' and their families' pain reporting was moderate for the worst pain categories only and stronger with longer time for patient-reported pain. These findings suggest limitations using proxy-reported pain in patients with aHF.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251364232"},"PeriodicalIF":1.4,"publicationDate":"2025-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144755539","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Martina Giachello, Chiara Provasoli, Simone Cosmai, Gloria Maria Modena, Daniela Cattani, Alessandra Dacomi, Cristina Chiari, Sarah Scollo, Stefano Mancin, Diego Lopane, Beatrice Mazzoleni
{"title":"Communication Tools for End-of-Life Conversations in Palliative Nursing: A Narrative Review.","authors":"Martina Giachello, Chiara Provasoli, Simone Cosmai, Gloria Maria Modena, Daniela Cattani, Alessandra Dacomi, Cristina Chiari, Sarah Scollo, Stefano Mancin, Diego Lopane, Beatrice Mazzoleni","doi":"10.1177/10499091251351571","DOIUrl":"https://doi.org/10.1177/10499091251351571","url":null,"abstract":"<p><p><b>Background:</b> Effective end-of-life communication is essential to patient-centered palliative care, yet nurses often report feeling unprepared for these challenging conversations. A variety of structured tools have emerged to support healthcare professionals in facilitating meaningful discussions with terminally ill patients. <b>Objectives:</b> This narrative review aims to identify and synthesize the main communication tools available to nurses to improve end-of-life conversations, with a focus on practical, evidence-based strategies that enhance patient-centered care planning. <b>Methods:</b> A comprehensive literature search was conducted in PubMed, CINAHL, Scopus, and UpToDate for studies published between 2012 and March 2025. Inclusion criteria encompassed English or Italian peer-reviewed articles focusing on adult patients receiving palliative care and evaluating communication tools designed for or involving nurses. Data were extracted and summarized based on study type, tool, and reported outcomes. <b>Results:</b> Nineteen studies met the inclusion criteria, including randomized controlled trials, systematic reviews, and qualitative studies. Communication tools were categorized into five main groups: card games, question prompt lists, acronym-based protocols, structured conversation guides, and digital tools. Across studies, these tools were associated with improved communication quality, greater patient participation, increased expression of care preferences, and enhanced emotional well-being. <b>Conclusion:</b> Nurse-led use of structured communication tools can facilitate timely, compassionate end-of-life conversations aligned with patients' values and needs. Their integration into palliative nursing practice requires targeted training and institutional support. Future research should explore their long-term effects on patient outcomes and care quality.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251351571"},"PeriodicalIF":1.4,"publicationDate":"2025-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144755540","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Joelle N Friesen, Erik J Wanberg, Alexandra Allman, Allison LeMahieu, Kelly Pennington, Alice Gallo de Moraes
{"title":"Rapid Response Events Prompt Increased Goals of Care Discussions and Code Status Changes.","authors":"Joelle N Friesen, Erik J Wanberg, Alexandra Allman, Allison LeMahieu, Kelly Pennington, Alice Gallo de Moraes","doi":"10.1177/10499091251363899","DOIUrl":"https://doi.org/10.1177/10499091251363899","url":null,"abstract":"<p><p>BackgroundWhile rapid response teams (RRT) are widely implemented to address clinical deterioration in hospitalized patients, their impact on goals of care (GOC) discussions remains underexplored.AimsWe aimed to evaluate whether RRT activations were associated with subsequent goals of care discussions, code status changes, and clinical outcomes.MethodsWe conducted a retrospective single-center review of hospitalized adult patients admitted to medicine services who had RRT activations between January and December 2023. The primary outcome was GOC discussion within 72 h of RRT. GOC discussions were identified through EMR documentation of conversations, code status changes, and ACP notes. Secondary outcomes included code status change, transition to comfort care, and 30- and 90-day mortality. Analyses were adjusted using inverse probability of treatment weighting.Results1823 RRTs among 1677 patients were analyzed; 47% of patients were female and 88% identified as white. Those transferred to the ICU had higher odds of goals of care discussions (OR 1.52, <i>P</i> < 0.001), code status change (OR 2.43, <i>P</i> < 0.001), and transition to comfort care (OR 1.47, <i>P</i> = 0.026) compared to those who remained on the floor. ICU transfer was also associated with increased 30- (OR 1.39, <i>P</i> = 0.006) and 90-day mortality (OR 1.30, <i>P</i> = 0.014).ConclusionsICU transfer following RRT activation is strongly associated with downstream goals of care discussions, changes in code status, comfort-focused care, and higher mortality. This demonstrates the importance of initiating goals of care discussions early and often, regardless of whether clinical decompensation is anticipated.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251363899"},"PeriodicalIF":1.4,"publicationDate":"2025-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144746610","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ankita Mehta, Emily Chai, Samuel Acquah, Joshua Lasseigne, Amy Newman, Li Zeng, Laura P Gelfman
{"title":"Palliative Care Consults Among Critically Ill Patients: Does Timing Matter?","authors":"Ankita Mehta, Emily Chai, Samuel Acquah, Joshua Lasseigne, Amy Newman, Li Zeng, Laura P Gelfman","doi":"10.1177/10499091251364245","DOIUrl":"https://doi.org/10.1177/10499091251364245","url":null,"abstract":"<p><p>IntroductionData supports the need for palliative care for critically ill patients. It is unclear if clinicians are able to identify which patients would benefit most from an in-ICU consult by the palliative care team. Given the limitations of our data, we used in-hospital mortality as a proxy for unmet palliative care needs.MethodsWe conducted a retrospective cohort study of patients in our palliative care consultation registry who had a MICU length of stay (LOS) ≥ 72 h at Mount Sinai Hospital in 2022. Using electronic health record and administrative data, we compared the sociodemographic and clinical characteristics of patients who received an in-ICU palliative care consult and those who received a post-ICU consult.ResultsIn our sample, 195 patients received an in-ICU palliative care consultation and 63 had a post-ICU consultation. There were no sociodemographic or clinical differences among the two groups. As compared to the post-ICU consult group, patients who received an in-ICU consult had a longer median ICU LOS and had more days between consult and discharge. There was no difference with regards to in-hospital mortality.DiscussionOur findings suggest that sociodemographic and clinical indicators do not distinguish which patients receive an in-ICU consult. Yet, all patients in this sample have a high in-hospital mortality rate regardless of consult timing. Delivery models are needed to ensure more patients with a MICU LOS ≥72 h receive an in-ICU palliative care consult.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251364245"},"PeriodicalIF":1.4,"publicationDate":"2025-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144736457","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Factors Associated With Potentially Inappropriate Medication Use and Deprescribing Among Patients Receiving Home-Based Hospice Care.","authors":"Yi-Chen Wu, Yu-Chang Yang, Meng-Sui Lee, Yung-Feng Yen, Mei-Ju Chen","doi":"10.1177/10499091251361460","DOIUrl":"https://doi.org/10.1177/10499091251361460","url":null,"abstract":"<p><p>PurposeThis study aimed to examine the factors associated with potentially inappropriate medication (PIM) use and the deprescribing among home hospice patients in Taipei, Taiwan.MethodsWe analyzed 101 home hospice patients from a Taipei City hospital from 2016 to 2022, using 2 significant PIMs which are identified by the OncPal guideline and STOPPFrail version 2 respectively. Logistic regression and Cox proportional hazards regression were used to analyze factors associated with PIMs and the deprescribing.ResultsOf the 101 participants, about half of the patients were prescribed at least 1 of the 2 PIM at the beginning of the program. 41.6% had excessive polypharmacy and 29.7% received nasogastric tube feeding. The common drug of the both PIMs included antihypertensives, antiulcer agents, vitamins and statins. We found the factor associated with using both PIMs is excessive polypharmacy, with adjusted odds ratios of 5.87 (95% Cl: 2.14-16.08) for STOPPFrail and 10.39 (95% Cl: 3.38-31.99) for OncPal respectively. The discontinuation rate is about 30%. A negative association was found between nasogastric tube feeding and PIM deprescribing, with adjusted hazard ratios of 0.23 (95% Cl: 0.07-0.82) for STOPPFrail and 0.08 (95% Cl: 0.02-0.46) for OncPal.ConclusionThis study demonstrates a high prevalence of PIMs among home-hospice care patients, with PIMs being less likely to be deprescribed in those receiving nasogastric tube feeding. The further research may be warranted to minimize use of PIM to enhance medication safety for patients.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251361460"},"PeriodicalIF":1.4,"publicationDate":"2025-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144736456","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hannah Maciejewski, Kathryn Levy, Catherine M Mann, Suzanne S Sullivan, Gina Schuster, Christopher W Kerr
{"title":"Exploring Virtual Reality as an Intervention to Improve Symptom Severity in Hospice-Eligible Patients.","authors":"Hannah Maciejewski, Kathryn Levy, Catherine M Mann, Suzanne S Sullivan, Gina Schuster, Christopher W Kerr","doi":"10.1177/10499091251363173","DOIUrl":"https://doi.org/10.1177/10499091251363173","url":null,"abstract":"<p><p>Virtual reality (VR) as an intervention has appeared in the literature and in clinical settings across many different populations. To expand the use of this care option, it is worth considering the ways in which a VR application may benefit individuals with life-limiting illness in hospice and palliative care settings. The incorporation of VR as a therapy option may aid in symptom management and support people nearing the end of life in focusing on aspects of their overall well-being. The goals of this study were to: 1) explore virtual reality as an intervention to improve symptom severity in hospice-eligible patients, 2) correlate self-reported presence scores to changes in symptom severity and 3) find evidence for feasibility of this type of intervention with a hospice eligible population. Participants partook in targeted, individualized VR experiences unique and personal to each participant; allowing them to revisit personally significant places where they experienced positive, meaningful memories during youth and adulthood. Due to difficulties in recruitment, a sample for sufficient statistical analysis was not achieved. However, the study yielded two takeaways: 1) evidence for feasibility and acceptability of this type of longitudinal intervention for hospice and palliative populations, 2) and VR sessions to meaningful places suggested potential symptom improvement and increased presence in VR with repeated sessions. Future research efforts should aim to expand on the use of VR in hospice-eligible populations.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251363173"},"PeriodicalIF":1.4,"publicationDate":"2025-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144736402","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Karen S Moore, Alison Colbert, Rick Zoucha, Verna Hendricks-Ferguson, John Taylor
{"title":"Race, Ethnicity, Neighborhood Disparities and Palliative Care Utilization: Retrospective Cohort Study.","authors":"Karen S Moore, Alison Colbert, Rick Zoucha, Verna Hendricks-Ferguson, John Taylor","doi":"10.1177/10499091251358381","DOIUrl":"https://doi.org/10.1177/10499091251358381","url":null,"abstract":"<p><p>BackgroundHistorically palliative care(PC) is utilized less in Hispanic and non-Hispanic Black(NHB) persons compared to non-Hispanic White(NHW). The potential for community and social factors to be fundamental to the disproportionality of disease burden and PC utilization is worthy of exploration.AimExplore the collective impact of race, ethnicity, and neighborhood disadvantage on PC utilization.DesignRetrospective cohort study utilizing inpatient electronic health records of adult patients now deceased.Setting/ParticipantsIncluded NHB, Hispanic, or NHW adult patients(age>18 years) admitted to midwestern healthcare system hospitals between 2009-2022 for solid cancer, cardiovascular, or cerebrovascular diseases that died within 12 months of hospitalization.Results24,243 total patients qualified based upon inclusion criteria(NHW (n = 21,346; 88.05%), NHB(n = 2666;11.00%) Hispanic patients (n = 231;0.95%)). In PC Offered, NHB(OR = 1.36) and Hispanic persons(OR = 1.17) were no less likely to be offered PC than NHW. Higher comorbidity index scores(OR = 1.13%), cerebrovascular disease(OR = 1.13), and do not resuscitate(DNR)(OR = 5.09) were more likely to be offered PC. ADI was not associated with increased likelihood of being offered PC. In PC Accepted, NHB(OR = 1.37), Hispanic(OR = 1.40), cardiovascular (OR = 1.12), cerebrovascular(OR = 1.40), comorbidity index scores(1.11),and DNR(OR = 5.79) were more likely to accept PC.ConclusionNHB and Hispanic persons were no less likely to be offered and were more likely to accept PC than NHW. PC services were offered to less than 40% of eligible patients. Of those who were offered PC, over 70% accepted care. The increased likelihood of PC being offered and accepted when comorbidity index scores are higher, and DNR suggests utilization of PC at end-of-life and not throughout serious illness.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251358381"},"PeriodicalIF":0.0,"publicationDate":"2025-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144593236","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Application of Immersive Teaching in the Training of Hospice Care Professionals: A Randomized Clinical Trial.","authors":"Huirong Zhang, Ying Li, Qin Lu, Feng Cao","doi":"10.1177/10499091251357597","DOIUrl":"https://doi.org/10.1177/10499091251357597","url":null,"abstract":"<p><p>ContextHospice care landscape is the stark contrast between developed and developing countries. There is a pressing need to strengthen the construction of hospice care talent teams further and establish corresponding training and development systems. Moreover, the study on the immersive teaching in hospice care training is lacking.BackgroundThis study aimed to investigate the application and responses for immersive teaching in the training of hospice care professionals.MethodsThis was a randomized clinical trial. 48 hospice care professionals participating in training programs from May 2021 to November 2023 were divided into an intervention group and a control group, with 24 participants in each group. Traditional teaching was given to the control group, while traditional teaching methods combined with immersive teaching were given to the intervention group. Both groups' theory, operation, and satisfaction scores were compared.ResultsUnder the teaching modes adopted by both groups, both groups' theoretical and practical operation scores improved. The similar theoretical scores were found between the 2 groups (<i>P</i> > 0.05). However, the operational scores of the intervention group were significantly higher than those of the control group (<i>P</i> < 0.05). The satisfaction and simulated experience satisfaction of the trainees in the intervention group were significantly higher than those in the control group, with statistically significant differences (<i>P</i> < 0.05).ConclusionThe application of immersive teaching in the training of hospice care professionals helps enhance operational ability and simulate experience, and thus improve satisfaction among trainees.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251357597"},"PeriodicalIF":0.0,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144556299","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Supriya Peshin, Claudia Villa Celi, Saima Rashid, Asti Rego, Steven J Baumrucker
{"title":"Pharmacology Update: Suzetrigine: A Novel NaV1.8 Sodium Channel Inhibitor for Acute Pain Management.","authors":"Supriya Peshin, Claudia Villa Celi, Saima Rashid, Asti Rego, Steven J Baumrucker","doi":"10.1177/10499091251353455","DOIUrl":"https://doi.org/10.1177/10499091251353455","url":null,"abstract":"<p><p>Suzetrigine (formerly known as VX-548) is a novel sodium channel inhibitor that selectively targets NaV1.8, a key mediator in pain signal transmission, particularly in peripheral nociceptive neurons. This mechanism distinguishes suzetrigine from traditional opioid therapies, offering an effective alternative for acute pain management without the risks of addiction, sedation, or respiratory depression commonly associated with opioids. This literature review examines the pharmacology, mechanism of action, and clinical efficacy of suzetrigine, with an emphasis on its role in acute pain reduction, safety profile, and emerging clinical applications. Preclinical research on suzetrigine and earlier NaV1.8 inhibitors has demonstrated significant reductions in nociceptive behaviors in animal models of inflammatory and neuropathic pain, with minimal off-target effects on other sodium channels such as NaV1.7 and NaV1.9. Unlike opioids and nonsteroidal anti-inflammatory drugs (NSAIDs), suzetrigine acts by selectively inhibiting NaV1.8 channels, which play a specialized role in pain amplification, while sparing central nervous system pathways. In Phase 2 clinical trials involving patients undergoing bunionectomy and abdominoplasty, suzetrigine achieved significant reductions in postoperative pain compared to placebo and demonstrated analgesic efficacy comparable to hydrocodone/acetaminophen. This review highlights the advantages of suzetrigine over current pain management drugs, particularly its ability to relieve pain without side the unwanted side effects from opioids. Suzetrigine has been well-tolerated in both preclinical and clinical settings, with mild gastrointestinal symptoms reported as the most common adverse effect. Its selective mechanism makes suzetrigine a strong candidate for use in multimodal analgesic regimens, especially in postoperative care or among patients at risk for opioid misuse. In the context of the ongoing opioid crisis, suzetrigine represents a promising advancement in acute pain treatment. However, further research is needed to evaluate its long-term safety and efficacy, especially in chronic pain conditions and in combination with other analgesics. As its clinical use expands, suzetrigine may offer a critical tool for reducing opioid dependency across both acute and long-term pain management strategies.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251353455"},"PeriodicalIF":0.0,"publicationDate":"2025-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144556300","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tamiko Younge, Hailey Moore, Jessica D Thompkins, Maureen E Lyon
{"title":"Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations.","authors":"Tamiko Younge, Hailey Moore, Jessica D Thompkins, Maureen E Lyon","doi":"10.1177/10499091251356237","DOIUrl":"https://doi.org/10.1177/10499091251356237","url":null,"abstract":"<p><p>IntroductionCaregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child's disease. This diverse population may share common goals related to their child's future care. Our objective was to describe goals of care as explored through advance care planning conversations among the high-risk and high-need community of families with children with rare diseases.MethodsWe performed inductive content analysis of Respecting Choices Next Steps FAmily CEntered (FACE) pediatric advance care planning conversations to identify themes related to goals of care. Interviews were conducted in the context of beta testing and a randomized control trial of a palliative care and advance care planning intervention for parents of children with rare diseases who cannot participate in medical decision making.ResultsWe analyzed 15 interviews conducted with 19 parents. We identified 13 goals of care themes: <i>maintaining stability, being happy, moving the body, thriving along their own path, reducing interventions, living a long life, curing disease, avoiding complications, connecting with others, having a village, an understanding world, knowing our child,</i> and <i>partnering with our medical team</i>. Families identified goals within 3 to 11 themes (mean = 7).ConclusionsParents of children with rare diseases have a multitude of holistic goals related to their child's care. High-quality advance care planning conversations may help families articulate these goals. Using language expressed by families described here may help healthcare teams and families communicate effectively around treatment plans and goals of care.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251356237"},"PeriodicalIF":0.0,"publicationDate":"2025-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144546733","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}