Mostafa Abasseri, Shakira Hoque, Kim Caldwell, Linda Sheahan, Slavica Kochovska, Meera Agar, Amany Zekry
{"title":"Exploring Misconceptions of Palliative Care Among Patients With Hepatocellular Carcinoma: A Pilot Study.","authors":"Mostafa Abasseri, Shakira Hoque, Kim Caldwell, Linda Sheahan, Slavica Kochovska, Meera Agar, Amany Zekry","doi":"10.1177/10499091241268423","DOIUrl":"10.1177/10499091241268423","url":null,"abstract":"<p><p>BackgroundHepatocellular carcinoma is a burdensome form of liver cancer with an increasing global prevalence. Emerging evidence has shown that early palliative care introduction at diagnosis of any life-limiting illness improves patient and carer outcomes. Despite this, patients with hepatocellular carcinoma usually receive palliative care late. These patients are important stakeholders in the provision of palliative care, but their perceived barriers regarding its delivery are poorly defined.AimThis <b>pilot</b> study aimed to identify the barriers perceived by patients to integrating palliative care into the hepatocellular carcinoma treatment algorithm.DesignPatients living with hepatocellular carcinoma undertook semi-structured interviews about their perceptions of palliative care. We compared these perceptions before and after providing a brief explanation of palliative care. Interview data was inductively coded in NVivo 12 (2018) and thematically analysed.ResultsTwenty-one patients were interviewed. 16 perceived palliative care to mean end-of-life therapy, and nine participants had no prior knowledge of palliative care. After hearing a definition of palliative care, 17 participants reported changed positive attitudes. Seven participants supported a name change, including four participants who continued to reject palliative care following the explanation due to the negative stigma associated with the term 'palliative care'.ConclusionThere is significant misperception about the purpose of palliative care among patients with hepatocellular carcinoma, constituting a barrier to early integration. This can be feasibly addressed with a two-folded educational and renaming initiative to dispel patient misconceptions regarding palliative care. Effective strategies to achieve this should be developed and tested with relevant stakeholders, particularly patients.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"467-476"},"PeriodicalIF":0.0,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11894838/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142001612","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}
{"title":"Congruence Between Older Chinese Immigrants and Their Adult Children on Hospice Attitudes and Preferences: An Actor-Partner Interdependence Model.","authors":"Xiaofang Liu, Cathy Berkman","doi":"10.1177/10499091241265100","DOIUrl":"10.1177/10499091241265100","url":null,"abstract":"<p><p><b>Objectives:</b> This study investigates the alignment of awareness, attitudes, and preferences regarding hospice care between older Chinese immigrants and their adult children. <b>Methods:</b> Forty older Chinese immigrants and their adult children in New York City were assessed for their awareness, attitudes, and preferences for hospice care. McNemar's and Cohen's Kappa tests examined differences and congruence within parent-child dyads. The Actor-Partner Interdependence Model (APIM) was employed for dyadic analysis using structural equation modeling (SEM). <b>Results:</b> Discrepancies were observed between older parents and adult children, with the latter showing higher awareness and more positive attitudes toward hospice care compared to their parents. While 84.2% of older parents expressed willingness to accept hospice care, only 65.7% of their children believed their parents would desire hospice, and only 39.5% of children expressed a preference for hospice care for their parents. Kappa coefficients indicated poor-to-slight agreement within parent-child dyads, but there was a fair level of agreement in children's perceptions of their parents' preferences and their own preferences for parents. APIM revealed significant actor effects but nonsignificant partner effects, suggesting that parents' and children's preferences are influenced by their own attitudes, but not by those of other family members within the parent-child dyads. <b>Conclusion:</b> The incongruence in attitudes and preferences for hospice care between Chinese immigrant older adults and their children emphasizes the need for culturally-informed education and interventions to facilitate open conversations and ensure patient-centered end-of-life care for older Chinese immigrants.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"508-516"},"PeriodicalIF":0.0,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141763671","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":"The Importance of Providing Training to Informal Caregivers of Hospice Patients: Caregiver Experience With Hospice Care Based on Consumer Assessment of Healthcare Providers & Systems Surveys.","authors":"Tami M Videon, Robert J Rosati, Stephanie Finn","doi":"10.1177/10499091241262804","DOIUrl":"10.1177/10499091241262804","url":null,"abstract":"<p><p>BackgroundInformal caregivers aid hospice patients at the end of life. Little is known of their preparation and confidence in providing care, and how this relates to experiences of hospice care.ObjectiveExamine factors associated with informal caregivers' rating of home hospice care.MethodsData come from 828 completed CAHPS® surveys mailed between January 2022 and December 2023 from a single non-profit Hospice organization. Multivariate logistic regression analyses examined the independent influence of various aspects of hospice care on ratings of hospice.ResultsNine of every 10 respondents rated hospice care high (9 or 10). Most aspects of hospice care were rated favorably. Nearly all respondents felt the patient was treated with dignity and respect (96%). The measure with the greatest room for improvement was getting help as soon as needed (82% \"always\"). Multivariate analyses revealed 6 factors that independently predicted overall rating of hospice care. The strongest predictor was always getting help as soon as needed, followed by believing the hospice team cared about the patient. Three measures of caregiver training were significantly associated with higher ratings of hospice care being trained to: safely move the patient, what to do if patient became restless, and on pain medications.ConclusionsWhen informal caregivers feel trained to assess and manage the symptoms, they rate hospice care more favorably. Greater attention to informal caregiver training and support are imperative to improving hospice care.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"459-466"},"PeriodicalIF":0.0,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141433724","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":"Characteristics of Patients With Amyotrophic Lateral Sclerosis Followed by a Home Palliative Care Team.","authors":"Sebastiano Mercadante, Antonino Petronaci, Angela Terranova, Alessandra Casuccio","doi":"10.1177/10499091241266985","DOIUrl":"10.1177/10499091241266985","url":null,"abstract":"<p><p>BackgroundInformation about patients with amyothrophic lateral sclerosis (ALS) followed at home is limited.ObjectivesTo assess patients's characteristics at admission to a home palliative care program based on a multidisciplinary team, and the temporal course along the trajectory of ALS disease.DesignRetrospective. Setting/subjects: Charts of a consecutive number of ALS patients who were referred to a specialistic home palliative care were reviewed.MeasurementGeneral data, referral, start of home palliative care, use of ventilator support and nutritional support, were recorded. The existence of advance directives and shared care planning was also collected.Results82 patients were examined; 31 patients died before the term of the study and 51 patients were still living. No patient anticipately expressed their will regarding their treatments. However, a certain number of patients shared a care planning with ALS team, generally after starting home care. Most patients did not have ventilatory support at the beginning of home care assistance, but progressively received ventilatory support by NIV or MV, particularly those who were still living. NIV at start of home care was negatively correlated to frontotemporal dementia. (<i>P</i> = 0.015), and directly correlated to referral from hospital and GP (<i>P</i> = 0.031) and awareness of disease (<i>P</i> = 0.034). Gastrostomy at start of home care was positively correlated to referral from hospital (<i>P</i> = 0.046). Gastrostomy during home care was correlated to bulbar SLA (<i>P</i> = 0.017). The use of NIV during home care was positively correlated to shared care planning (<i>P</i> = 0.001).ConclusionThe continuous presence of a multi-specialist team may provide timely intervention, guarantee and trust on the part of the patient and family members.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"483-488"},"PeriodicalIF":0.0,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141725430","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}
Heather A Davis, Christy Torkildson, Lisa C Lindley
{"title":"California Hospice Ownership Changes From 2018-2020: A Spatial Analysis and Case Illustration.","authors":"Heather A Davis, Christy Torkildson, Lisa C Lindley","doi":"10.1177/10499091241262436","DOIUrl":"10.1177/10499091241262436","url":null,"abstract":"<p><p>Hospices in California have undergone significant and complicated ownership changes in recent years. Little is known about the impact of these ownership changes on hospices. The purpose of our longitudinal, retrospective descriptive study was to describe the ownership changes impacting hospices 2018 to 2021 in California. Using descriptive statistics, we measured characteristics of hospices with and without ownership changes employing public data from the California Home Health Agencies and Hospice Annual Utilization Report. Ownership change characteristics were measured via publicly available hospice provider and facility data. Spatial characteristics were additionally measured via latitude and longitude publicly available data. Our findings showed that ownership changes were significant and complicated. An influx of for-profit organizations into the California market was primarily responsible for these changes. Additionally, lack of corporate financial public disclosure and voluntary hospice accreditation, certification, and reporting result in a lack of free, publicly available, definitive comprehensive data on for-profit hospice ownership. This hinders information gathering on and provider/familial choice-making regarding hospices. Our study provides critical insight into the impact of ownership changes and lack of definitive, free, publicly available information on adult hospices in California caring for children and has important clinical, research, and policy implications.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"429-437"},"PeriodicalIF":0.0,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141322269","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}
Emily Marquez Campbell, Chaitanya Konda, Kelsey Lau, Winnie Wang
{"title":"Integrating an Interventional Pain Management Curriculum in Hospice and Palliative Medicine Fellowship Training: A Feasibility Study.","authors":"Emily Marquez Campbell, Chaitanya Konda, Kelsey Lau, Winnie Wang","doi":"10.1177/10499091241268597","DOIUrl":"10.1177/10499091241268597","url":null,"abstract":"<p><p>BackgroundPain is a common symptom for patients with cancer. Hospice and Palliative Medicine (HPM) physicians are expected to be experts in both pharmacologic and non-pharmacologic treatment of pain for this patient population. Insufficient knowledge of non-pharmacologic, interventional approaches to pain management is a barrier to providing optimal care. This study assesses the feasibility and effectiveness of an interventional pain management curriculum on HPM fellow knowledge at a single institution.ObjectivesThe primary objective was to implement an interventional pain management curriculum for HPM fellows' and secondly to measure its effects on their knowledge and confidence in interventional pain management approaches.MethodsWe executed an interventional pain management curriculum for HPM fellows. The curriculum consisted of 6 fifty-minute virtual lectures. Anonymous pre- and post-curriculum surveys were used to assess curricular impact.ResultsPost-course surveys showed a significant increase in HPM fellows' knowledge and confidence in interventional pain management techniques.ConclusionsAn interventional pain management curriculum for HPM fellows is a feasible and promising intervention to significantly impact fellows' knowledge and confidence in non-pharmacologic treatment of cancer pain.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"504-507"},"PeriodicalIF":0.0,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11894826/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141794460","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}
Rachel A Hadler, Rachel Klinedinst, Christopher A Jones, Yuhua Bao, Ravi Pathak, Ali J Zarrabi, William E Rosa
{"title":"Dangerous Variation or Patient-Centered Care? Palliative Care and Pain Providers' Comfort, Experiences, and Approaches when Treating Cancer Pain With Coexisting Aberrant Behaviors.","authors":"Rachel A Hadler, Rachel Klinedinst, Christopher A Jones, Yuhua Bao, Ravi Pathak, Ali J Zarrabi, William E Rosa","doi":"10.1177/10499091241259034","DOIUrl":"10.1177/10499091241259034","url":null,"abstract":"<p><p>BackgroundPatients with cancer-related pain are at high risk for aberrant drug use behaviors (ADB), including self-escalation, diversion and concurrent illicit substance or opioid misuse; however, limited evidence is available to guide opioid prescribing for patients with life-limiting illness and concurrent or suspected ADB. We sought to characterize how specialists evaluate for and manage these high-risk behaviors in patients with cancer-related pain.MethodsWe conducted telephonic semi-structured interviews with palliative care and pain medicine providers. Participants discussed their own comfort and experience level with identifying and managing ADB in patients with life-limiting illness. They were subsequently presented with a series of standardized scenarios and asked to describe their concerns and management strategies.Results95 interdisciplinary pain and palliative care specialists were contacted; 37 agreed to participate (38.9%). Analysis of interview contents revealed several central themes: (1) widespread discomfort and anxiety regarding safe and compassionate opioid prescribing for high-risk patients, (2) belief that widely used risk-mitigation tools such as opioid contracts and urine drug screens provided inadequate support for decision-making, and (3) lack of institutional and organizational support and guidance for safe prescribing strategies. Most clinicians reported self-education regarding addiction and alternative prescribing/pain management strategies. Providers varied widely in their willingness to discontinue opioid prescribing in a patient with aberrant behavior and pain associated with life-limiting illness.ConclusionProviders caring for patients demonstrating ADB and cancer-related pain struggle to balance safe prescribing with symptom management. Increased guidance is needed regarding opioid prescribing, monitoring, and discontinuation in high-risk patients.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"489-503"},"PeriodicalIF":0.0,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11612028/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141238644","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}
Rebecca L Utz, Michael Hollingshaus, Attrayee Bandyopadhyay, Kathie Supiano, Margaret Clayton, Katherine A Ornstein, Djin Tay, Eli Iacob, Ken Smith, Caroline Stephens
{"title":"Hospice Use by Cause of Death: A Cohort Study Using Utah Population Database.","authors":"Rebecca L Utz, Michael Hollingshaus, Attrayee Bandyopadhyay, Kathie Supiano, Margaret Clayton, Katherine A Ornstein, Djin Tay, Eli Iacob, Ken Smith, Caroline Stephens","doi":"10.1177/10499091251338254","DOIUrl":"https://doi.org/10.1177/10499091251338254","url":null,"abstract":"<p><p>PurposeIllnesses such as cancer often follow a predictable trajectory of decline, while others, such as Alzheimer's Disease and Related Dementias (ADRD) and Chronic Obstructive Pulmonary Disease (COPD), follow a more dwindling and protracted decline. Hospice, a form of EOL palliative care for individuals with less than 6 months of remaining life, was originally created for patients with life-limiting cancer but is increasingly used by all patients with all types of life-limiting diagnoses. This study assesses whether hospice use differs by the underlying cause of death and whether current hospice eligibility and practices provide optimal EOL to all causes of death.MethodBased on data from 17,321 hospice users drawn from the Caregiver Population Science (C-PopS) decedent cohort of the Utah Population Database (UPDB), we used multinomial regression analyses and Kaplan-Meier Survival Curves to model hospice length-of-stay by cause of death, in order to identify patterns of hospice use by patients who have different underlying causes of death.Major FindingsNon-cancer decedents were more likely to have sub-optimal patterns of hospice care, including <i>minimal use</i>, lasting less than a week, and <i>extended use</i>, lasting more than 6 months. Stroke decedents were the most likely to have <i>minimal-use</i> patterns of hospice, whereas dementia and COPD decedents were most likely to have <i>extended use</i>.ConclusionNew models of hospice-like EOL care that can accommodate both short-term and long-term palliative care needs may help meet the diverse needs of patients and families facing different EOL trajectories associated with common causes of death.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251338254"},"PeriodicalIF":0.0,"publicationDate":"2025-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144056347","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}
Anna Dray, Renuka Chepuru, Stephanie Erickson, S Mae Bradbury, Sara Hock, Kaylee Lindahl, Jose Velasco, Helen Hoover, Nicole Siparsky
{"title":"Targeted Simulation Training in ICU Shared Decision-Making Boosts Confidence and Competence in Medical Students.","authors":"Anna Dray, Renuka Chepuru, Stephanie Erickson, S Mae Bradbury, Sara Hock, Kaylee Lindahl, Jose Velasco, Helen Hoover, Nicole Siparsky","doi":"10.1177/10499091251334637","DOIUrl":"https://doi.org/10.1177/10499091251334637","url":null,"abstract":"<p><p>IntroductionShared decision-making (SDM) is the standard of communication. Many providers receive little or no training in SDM. In our study, we implemented a training simulation aimed at boosting medical student confidence and competence in SDM.Methods, Study DesignProspective, non-randomized, observational pilot study.Study SettingSimulation center in large, urban, academic medical center.RecruitmentParticipants were recruited by electronic mail invitation. Participation was voluntary and paid.ConsentParticipants were consented for participation in the study, including video recording, prior to starting the study.ParticipantsParticipants were recruited from our medical school's second (M2), third (M3), and fourth (M4) year classes. Each participant completed two confidence surveys, two simulations, and a communication training session. Seven months later, participants were invited to complete a confidence survey and an assessment of attitudes.ResultsThirty seven participants completed the study: 17 M2 (46%), 9 M3 (24%) , and 11 M4 (30%). We observed an improvement in learner confidence in 8 of 8 communication domains (100%). Following training, statistically significant improvement in learner competence was measured in 7 of 8 domains (87.5%). Our retention rate was 59% (n = 22) at seven months, at which time confidence in nonverbal communication was significantly higher. Participants rated the simulation highly.ConclusionSimulation is effective at improving medical student communication skill and confidence. Students maintained their increased confidence for at least seven months. We recommend the implementation of targeted simulation training early in medical school to establish a standard for SDM and enhance student communication skill and confidence.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251334637"},"PeriodicalIF":0.0,"publicationDate":"2025-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144061255","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}
Mary Katherine Rohrbaugh, Gail Houseman, Amy Cunningham, Stephanie Dobak, Hristelina Ilieva, Margaret Kreher
{"title":"The Impact of Cognitive Impairment on Advance Care Planning and Healthcare Utilization in People With ALS.","authors":"Mary Katherine Rohrbaugh, Gail Houseman, Amy Cunningham, Stephanie Dobak, Hristelina Ilieva, Margaret Kreher","doi":"10.1177/10499091251337464","DOIUrl":"https://doi.org/10.1177/10499091251337464","url":null,"abstract":"<p><p>ObjectiveHalf of people with amyotrophic lateral sclerosis (PALS) develop cognitive impairment and/or behavioral changes, which may affect decision-making ability and participation in advance care planning (ACP) discussions. We aimed to determine the impact cognitive impairment, as measured by the Edinburgh Cognitive and Behavioural ALS Screen (ECAS), has on PALS' ACP discussions and healthcare utilization.MethodsPALS from a retrospective chart review were categorized into 2 groups: cognitively intact or cognitively impaired (ALS Specific Score < 77, ALS Nonspecific Score < 24, ECAS Total Score < 105, and/or ECAS Behavior or Psychosis Score 1+). Documented advance directives (AD); ACP discussions; and rates of percutaneous endoscopic gastrostomy (PEG) placement, tracheostomy placement, hospitalization within 2 weeks of death, death in hospital, and hospice utilization were recorded. Late disease stage was defined as ALS Functional Rating Scale-Revised (ALSFRS-R) score ≤ 38. Group comparisons were completed using chi-square tests, Fisher's exact test, and independent samples t-tests with <i>P</i> < .05 significance.ResultsThirty-three (47.1%) of 70 PALS met ECAS criteria for cognitive impairment. Rates of AD for PEG placement, AD for tracheostomy placement, hospitalization within 2 weeks of death, death in hospital, and hospice enrollment were not significantly different between groups (<i>P</i> = .41, .62, .32, .30, .06, respectively) despite ALSFRS-R score ≥/< 38 (all <i>P</i> > .05). <b>Conclusions:</b> ACP discussions and healthcare utilization were not affected by cognitive impairment despite disease stage. It is unknown if cognitive impairment affects healthcare decision-making processes for PALS/families. Further research examining the effect of various provider communication strategies on outcomes is needed.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091251337464"},"PeriodicalIF":0.0,"publicationDate":"2025-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144016325","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}