The American journal of hospice & palliative care最新文献

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Utilization of Antibiotics for the Treatment of Urinary Tract Infections in End-of-Life Patients. 使用抗生素治疗临终患者的尿路感染。
The American journal of hospice & palliative care Pub Date : 2025-08-01 Epub Date: 2024-08-13 DOI: 10.1177/10499091241273949
Abigail Thomas, Lacey Davis, Allie Dolan, Rebecca Prewett
{"title":"Utilization of Antibiotics for the Treatment of Urinary Tract Infections in End-of-Life Patients.","authors":"Abigail Thomas, Lacey Davis, Allie Dolan, Rebecca Prewett","doi":"10.1177/10499091241273949","DOIUrl":"10.1177/10499091241273949","url":null,"abstract":"<p><p>PurposeThe use of antibiotics for end-of-life patients is controversial; currently there is limited guidance on the use of antibiotics in hospice patients. The threat of antibiotic resistance, risk of adverse events, variable efficacy, and time to benefit in hospice patients makes their use divisive. Patients' potential care needs are estimated using the palliative performance scale (PPS) with lower scores indicating more care is required. The purpose of this project is to examine the utilization of antibiotics for urinary tract infections (UTIs) in hospice patients.MethodsThis multi-center retrospective observational cohort study evaluated the prescribing of antibiotics in symptomatic vs asymptomatic hospice patients being treated for UTIs and assessed antibiotic initiation based on PPS of ≥30% or <30%. Patients included in this study were adults initiated on oral antibiotics for UTI. Exclusion criteria included antibiotics initiated prior to admission, prophylactic antibiotics, non-oral antibiotics, or if the patient revoked election of hospice.ResultsA total of 56 patients were prescribed antibiotics for UTIs during the 1-year study period. Half of the antibiotics were prescribed appropriately based on documented symptoms when starting the antibiotics. There was not a statistically significant difference between appropriate utilization based on PPS ≥30% or <30% using the Mann-Whitney U test (<i>P</i> = 0.255).ConclusionThe prescribing of antibiotics in end-of-life patients is not always appropriate regardless of the PPS. This may indicate that antibiotics are initiated in asymptomatic hospice patients, and the utilization of unnecessary medications presents the risk of adverse effects.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"769-774"},"PeriodicalIF":0.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141977600","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}
引用次数: 0
Roles of Chaplains and Clergy in Spiritual Care for African Americans in Hospice: A Pilot Study. 牧师和神职人员在安宁疗护中对非裔美国人的精神关怀中的作用:试点研究。
The American journal of hospice & palliative care Pub Date : 2025-08-01 Epub Date: 2024-08-02 DOI: 10.1177/10499091241268549
Denise D Quigley, Sara G McCleskey, Jason Lesandrini, Natalie McNeal, Nabeel Qureshi
{"title":"Roles of Chaplains and Clergy in Spiritual Care for African Americans in Hospice: A Pilot Study.","authors":"Denise D Quigley, Sara G McCleskey, Jason Lesandrini, Natalie McNeal, Nabeel Qureshi","doi":"10.1177/10499091241268549","DOIUrl":"10.1177/10499091241268549","url":null,"abstract":"<p><p>ContextSpiritual care is <i>recognition of</i> patient and caregiver spiritual/religious needs and <i>attention to</i> those needs. Caregivers of African American hospice patients are more likely to report worse emotional/religious support. Yet, spiritual care delivery and roles of community clergy and chaplains for African American hospice patients are not well understood.ObjectivesExamine who provides spiritual care to African American hospice patients and caregivers.MethodsPartnering with large, urban/suburban community hospice, we interviewed caregivers of deceased African American hospice patients (n = 12), their clergy (n = 3) and chaplains (n = 5). Using a phenomenological qualitative study design, we coded transcripts and deceased patient chart data and conducted thematic analysis to identify themes.ResultsCommunity clergy and chaplains tend to not interact and provide different aspects of emotional, religious and spiritual support to hospice patients and families. Clergy and chaplains agreed that rapport and openness of the patient were main factors in meeting spiritual care needs. Clergy provided interaction with a trusted person and connection to church, congregational support, religious beliefs/theology, and practices. Chaplains focused on present needs and issues of death and dying.ConclusionClergy and chaplains have distinct, complementary roles in providing spiritual care to African American hospice patients and families. Both are needed to provide desired spiritual care for African American hospice patients and their caregivers. Robust spiritual care programs need to ensure chaplains have sufficient time to spend with patients and families and incorporate collaboration, handoffs and integrated processes for clergy and chaplains. Research is needed on effectively including clergy in hospice spiritual care delivery.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"717-727"},"PeriodicalIF":0.0,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141879957","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}
引用次数: 0
Palliative Care Consults Among Critically Ill Patients: Does Timing Matter? 危重病人的姑息治疗咨询:时机重要吗?
IF 1.4
The American journal of hospice & palliative care Pub Date : 2025-07-28 DOI: 10.1177/10499091251364245
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}
引用次数: 0
Factors Associated With Potentially Inappropriate Medication Use and Deprescribing Among Patients Receiving Home-Based Hospice Care. 在接受居家安宁疗护的病人中,与潜在不适当用药及处方解除相关的因素。
IF 1.4
The American journal of hospice & palliative care Pub Date : 2025-07-27 DOI: 10.1177/10499091251361460
Yi-Chen Wu, Yu-Chang Yang, Meng-Sui Lee, Yung-Feng Yen, Mei-Ju Chen
{"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}
引用次数: 0
Exploring Virtual Reality as an Intervention to Improve Symptom Severity in Hospice-Eligible Patients. 探索虚拟实境干预改善安宁疗护适格病人症状严重程度。
IF 1.4
The American journal of hospice & palliative care Pub Date : 2025-07-27 DOI: 10.1177/10499091251363173
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}
引用次数: 0
Race, Ethnicity, Neighborhood Disparities and Palliative Care Utilization: Retrospective Cohort Study. 种族、民族、邻里差异与姑息治疗的使用:回顾性队列研究。
The American journal of hospice & palliative care Pub Date : 2025-07-09 DOI: 10.1177/10499091251358381
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}
引用次数: 0
Application of Immersive Teaching in the Training of Hospice Care Professionals: A Randomized Clinical Trial. 沉浸式教学在临终关怀专业人员培训中的应用:一项随机临床试验。
The American journal of hospice & palliative care Pub Date : 2025-07-03 DOI: 10.1177/10499091251357597
Huirong Zhang, Ying Li, Qin Lu, Feng Cao
{"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}
引用次数: 0
Pharmacology Update: Suzetrigine: A Novel NaV1.8 Sodium Channel Inhibitor for Acute Pain Management. 药理学更新:suzetriine:一种用于急性疼痛管理的新型NaV1.8钠通道抑制剂。
The American journal of hospice & palliative care Pub Date : 2025-07-02 DOI: 10.1177/10499091251353455
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}
引用次数: 0
Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations. 罕见病儿童的父母关怀目标:儿童预先护理计划对话内容分析。
The American journal of hospice & palliative care Pub Date : 2025-07-02 DOI: 10.1177/10499091251356237
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}
引用次数: 0
Factors Influencing Discharges to Hospice for Patients With Late-Stage Huntington's Disease. 影响晚期亨廷顿氏病患者出院接受临终关怀的因素。
The American journal of hospice & palliative care Pub Date : 2025-07-01 Epub Date: 2024-08-21 DOI: 10.1177/10499091241274725
Amy C Ogilvie, Ryan M Carnahan, Adys Mendizabal, Stephanie Gilbertson-White, Aaron Seaman, Elizabeth Chrischilles, Jordan L Schultz
{"title":"Factors Influencing Discharges to Hospice for Patients With Late-Stage Huntington's Disease.","authors":"Amy C Ogilvie, Ryan M Carnahan, Adys Mendizabal, Stephanie Gilbertson-White, Aaron Seaman, Elizabeth Chrischilles, Jordan L Schultz","doi":"10.1177/10499091241274725","DOIUrl":"10.1177/10499091241274725","url":null,"abstract":"<p><p><b>Background:</b> Hospice services for patients with Huntington's disease (HD) are likely beneficial in relieving significant burdens and minimizing costly hospitalizations at the end of life, though there has been little study or clinical guidance on hospice enrollment for patients with HD. <b>Objectives:</b> The primary objective of this study was to identify clinical, sociodemographic, and system-level factors associated with discharges to hospice compared to other dispositions for hospitalized patients with late-stage HD. <b>Methods:</b> These analyses used data from the Nationwide Inpatient Sample between the years 2007 and 2011. Weighted logistic regression with a forward selection approach was performed to identify factors associated with discharge to hospice compared to discharge to home, facility, other locations, and death in hospital. <b>Results:</b> These analyses included 6544 hospitalizations of patients with late-stage HD. There was a significant increasing trend in discharges to hospice over the study period (<i>P</i> < 0.001). After adjustment, multiple clinical, sociodemographic, and system-level variables were identified as being associated with discharges to hospice. Patients with aspiration pneumonia and non-aspiration pneumonias had lower odds of being discharged to hospice compared to dying in the hospital. When comparing to discharges to facilities and home, weight loss and palliative care consultation were associated with greater odds of discharge to hospice. <b>Conclusions:</b> Our findings serve as a foundation for future studies on these factors, and thus help clinician decision-making on when to start advance care planning or end-of-life care for patients with HD. These results also support studies developing hospice referral criteria specific to patients with HD.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"644-652"},"PeriodicalIF":0.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11931636/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142020033","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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