Pub Date : 2024-05-01Epub Date: 2023-06-13DOI: 10.1177/10499091231183107
Na Ouyang, Shelli L Feder, Justin N Baker, M Tish Knobf
Background: Prognostic communication between clinicians and parents in pediatric oncology is complex. However, no review has exclusively examined research on prognostic communication in pediatric oncology. In this review, we synthesize the evidence on prognostic communication in pediatric oncology and provide recommendations for future research. Methods: We conducted an integrative review searching six databases for studies on prognostic communication in pediatric oncology as of August 2022. We applied descriptive and narrative approaches to data analysis. Results: Fourteen quantitative and five qualitative studies were included. All studies were conducted in Western developed countries. In total, 804 parents of 770 children with cancer were included. Across studies, parents were predominately female, Non-Hispanic White, and had high school or higher levels of education. Most parents reported that prognostic communication was initiated in the first year after their children's diagnosis. High-quality prognostic communication was positively associated with trust and hope and negatively associated with parental distress and decisional regret. In qualitative studies, parents suggested that prognostic communication should be open, ongoing, and delivered with sensitivity. Most studies were of moderate quality. The main gaps included inconsistent definitions of prognostic communication, and a lack of comprehensive and validated measurements, high-quality longitudinal studies, and diverse settings and participants. Conclusions: Clinicians should initiate high-quality prognostic communication early on in clinical practice. Future research should consider conducting high-quality longitudinal studies, developing prognostic communication definitions and measurements, and conducting studies across settings with diverse populations.
{"title":"Prognostic Communication Between Parents and Clinicians in Pediatric Oncology: An Integrative Review.","authors":"Na Ouyang, Shelli L Feder, Justin N Baker, M Tish Knobf","doi":"10.1177/10499091231183107","DOIUrl":"10.1177/10499091231183107","url":null,"abstract":"<p><p><b>Background:</b> Prognostic communication between clinicians and parents in pediatric oncology is complex. However, no review has exclusively examined research on prognostic communication in pediatric oncology. In this review, we synthesize the evidence on prognostic communication in pediatric oncology and provide recommendations for future research. <b>Methods:</b> We conducted an integrative review searching six databases for studies on prognostic communication in pediatric oncology as of August 2022. We applied descriptive and narrative approaches to data analysis. <b>Results:</b> Fourteen quantitative and five qualitative studies were included. All studies were conducted in Western developed countries. In total, 804 parents of 770 children with cancer were included. Across studies, parents were predominately female, Non-Hispanic White, and had high school or higher levels of education. Most parents reported that prognostic communication was initiated in the first year after their children's diagnosis. High-quality prognostic communication was positively associated with trust and hope and negatively associated with parental distress and decisional regret. In qualitative studies, parents suggested that prognostic communication should be open, ongoing, and delivered with sensitivity. Most studies were of moderate quality. The main gaps included inconsistent definitions of prognostic communication, and a lack of comprehensive and validated measurements, high-quality longitudinal studies, and diverse settings and participants. <b>Conclusions:</b> Clinicians should initiate high-quality prognostic communication early on in clinical practice. Future research should consider conducting high-quality longitudinal studies, developing prognostic communication definitions and measurements, and conducting studies across settings with diverse populations.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"545-557"},"PeriodicalIF":1.9,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9977431","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01Epub Date: 2023-06-15DOI: 10.1177/10499091231184623
Sarah Mollman, Michelle Gierach, Amanda Sedlacek
Background: The COVID-19 pandemic created a unique opportunity to evolve an interdisciplinary palliative care seminar (IPC) into a virtual platform. This seminar provides foundational palliative and hospice concepts, introductions into palliative care disciplines, integration of teamwork, and incorporates interdisciplinary student led patient encounters. Traditionally, this experience had been in person, however during the COVID-19 pandemic, healthcare restrictions transitioned the educational delivery to a virtual platform.
Methods: To assess the knowledge gained from this novel experience, the Palliative Care Knowledge Test (PCKT) was administered before and after the IPC Seminar. A 1-year follow up survey was also administered to evaluate how the IPC Seminar was applicable to the students' clinical experiences and practice.
Results: The virtual didactics and virtual student led patient encounters significantly improved learners understanding of palliative and hospice care. This gain of knowledge was noted across undergraduate and graduate programs, which highlights the need for and benefit from foundational concepts. Furthermore, a 1-year follow up survey noted the IPC seminar was applicable to their practices and suggests that this experience will impact future patients.
Discussion: Many of the students practice in rural areas where access to palliative care services is limited or non-existent. This experience exponentially impacts the growth of palliative and hospice care understanding and access to care across the region.
Conclusion: Evolving our IPC Seminar has shown to significantly improve knowledge, foster collaboration of student led interdisciplinary teams, and increases capacity to meet the needs of more learners.
{"title":"Palliative Care Knowledge Following an Interdisciplinary Palliative Care Seminar.","authors":"Sarah Mollman, Michelle Gierach, Amanda Sedlacek","doi":"10.1177/10499091231184623","DOIUrl":"10.1177/10499091231184623","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic created a unique opportunity to evolve an interdisciplinary palliative care seminar (IPC) into a virtual platform. This seminar provides foundational palliative and hospice concepts, introductions into palliative care disciplines, integration of teamwork, and incorporates interdisciplinary student led patient encounters. Traditionally, this experience had been in person, however during the COVID-19 pandemic, healthcare restrictions transitioned the educational delivery to a virtual platform.</p><p><strong>Methods: </strong>To assess the knowledge gained from this novel experience, the Palliative Care Knowledge Test (PCKT) was administered before and after the IPC Seminar. A 1-year follow up survey was also administered to evaluate how the IPC Seminar was applicable to the students' clinical experiences and practice.</p><p><strong>Results: </strong>The virtual didactics and virtual student led patient encounters significantly improved learners understanding of palliative and hospice care. This gain of knowledge was noted across undergraduate and graduate programs, which highlights the need for and benefit from foundational concepts. Furthermore, a 1-year follow up survey noted the IPC seminar was applicable to their practices and suggests that this experience will impact future patients.</p><p><strong>Discussion: </strong>Many of the students practice in rural areas where access to palliative care services is limited or non-existent. This experience exponentially impacts the growth of palliative and hospice care understanding and access to care across the region.</p><p><strong>Conclusion: </strong>Evolving our IPC Seminar has shown to significantly improve knowledge, foster collaboration of student led interdisciplinary teams, and increases capacity to meet the needs of more learners.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"501-507"},"PeriodicalIF":1.9,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9637119","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01Epub Date: 2023-06-29DOI: 10.1177/10499091231186818
Myrna K Serna, Catherine Yoon, Julie Fiskio, Joshua R Lakin, Jeffrey L Schnipper, Anuj K Dalal
Background: Serious Illness Conversations (SICs) conducted during hospitalization can lead to meaningful patient participation in the decision-making process affecting medical management. The aim of this study is to determine if standardized documentation of a SIC within an institutionally approved EHR module during hospitalization is associated with palliative care consultation, change in code status, hospice enrollment prior to discharge, and 90-day readmissions. Methods: We conducted retrospective analyses of hospital encounters of general medicine patients at a community teaching hospital affiliated with an academic medical center from October 2018 to August 2019. Encounters with standardized documentation of a SIC were identified and matched by propensity score to control encounters without a SIC in a ratio of 1:3. We used multivariable, paired logistic regression and Cox proportional-hazards modeling to assess key outcomes. Results: Of 6853 encounters (5143 patients), 59 (.86%) encounters (59 patients) had standardized documentation of a SIC, and 58 (.85%) were matched to 167 control encounters (167 patients). Encounters with standardized documentation of a SIC had greater odds of palliative care consultation (odds ratio [OR] 60.10, 95% confidence interval [CI] 12.45-290.08, P < .01), a documented code status change (OR 8.04, 95% CI 1.54-42.05, P = .01), and discharge with hospice services (OR 35.07, 95% CI 5.80-212.08, P < .01) compared to matched controls. There was no significant association with 90-day readmissions (adjusted hazard ratio [HR] .88, standard error [SE] .37, P = .73). Conclusions: Standardized documentation of a SIC during hospitalization is associated with palliative care consultation, change in code status, and hospice enrollment.
背景:住院期间进行的重病会诊(SIC)可促使患者切实参与影响医疗管理的决策过程。本研究旨在确定住院期间在机构认可的电子病历模块中对 SIC 进行标准化记录是否与姑息治疗咨询、代码状态更改、出院前加入临终关怀服务以及 90 天再入院相关。方法:我们对一家学术医疗中心附属社区教学医院的全科患者在 2018 年 10 月至 2019 年 8 月期间的住院情况进行了回顾性分析。我们确定了有 SIC 标准化记录的就诊病例,并通过倾向评分与没有 SIC 的对照病例按 1:3 的比例进行了匹配。我们使用多变量配对逻辑回归和 Cox 比例危险度模型来评估主要结果。结果:在 6853 次就诊(5143 名患者)中,59 次就诊(59 名患者)有标准化的 SIC 记录(0.86%),58 次(0.85%)与 167 次对照就诊(167 名患者)匹配。与匹配的对照组相比,有标准化 SIC 记录的就诊者接受姑息治疗咨询(几率比 [OR] 60.10,95% 置信区间 [CI]12.45-290.08,P < .01)、有记录的代码状态改变(OR 8.04,95% CI 1.54-42.05,P = .01)和出院时接受临终关怀服务(OR 35.07,95% CI 5.80-212.08,P < .01)的几率更高。与 90 天再入院没有明显关系(调整后危险比 [HR] .88,标准误差 [SE] .37,P = .73)。结论:住院期间的 SIC 标准化记录与姑息治疗咨询、代码状态变化和安宁疗护注册有关。
{"title":"The Association of Standardized Documentation of Serious Illness Conversations With Healthcare Utilization in Hospitalized Patients: A Propensity Score Matched Cohort Analysis.","authors":"Myrna K Serna, Catherine Yoon, Julie Fiskio, Joshua R Lakin, Jeffrey L Schnipper, Anuj K Dalal","doi":"10.1177/10499091231186818","DOIUrl":"10.1177/10499091231186818","url":null,"abstract":"<p><p><b>Background:</b> Serious Illness Conversations (SICs) conducted during hospitalization can lead to meaningful patient participation in the decision-making process affecting medical management. The aim of this study is to determine if standardized documentation of a SIC within an institutionally approved EHR module during hospitalization is associated with palliative care consultation, change in code status, hospice enrollment prior to discharge, and 90-day readmissions. <b>Methods:</b> We conducted retrospective analyses of hospital encounters of general medicine patients at a community teaching hospital affiliated with an academic medical center from October 2018 to August 2019. Encounters with standardized documentation of a SIC were identified and matched by propensity score to control encounters without a SIC in a ratio of 1:3. We used multivariable, paired logistic regression and Cox proportional-hazards modeling to assess key outcomes. <b>Results:</b> Of 6853 encounters (5143 patients), 59 (.86%) encounters (59 patients) had standardized documentation of a SIC, and 58 (.85%) were matched to 167 control encounters (167 patients). Encounters with standardized documentation of a SIC had greater odds of palliative care consultation (odds ratio [OR] 60.10, 95% confidence interval [CI] 12.45-290.08, <i>P</i> < .01), a documented code status change (OR 8.04, 95% CI 1.54-42.05, <i>P</i> = .01), and discharge with hospice services (OR 35.07, 95% CI 5.80-212.08, <i>P</i> < .01) compared to matched controls. There was no significant association with 90-day readmissions (adjusted hazard ratio [HR] .88, standard error [SE] .37, <i>P</i> = .73). <b>Conclusions:</b> Standardized documentation of a SIC during hospitalization is associated with palliative care consultation, change in code status, and hospice enrollment.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"479-485"},"PeriodicalIF":1.9,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10983774/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9690158","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01Epub Date: 2023-06-02DOI: 10.1177/10499091231180553
Carolina Parra-Cantu, Jennifer M Martinez-Thompson, Forrest B Linch, Tasha L Welch, Claudia Z Chou, Adele K Pattinson, Nathan P Staff, Melissa Neisen
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease with a median survival of about 3 years. An ALS multidisciplinary team can provide primary palliative care and improve outcomes and quality of life for patients. Feeding tube insertion may be considered for patients with significant weight loss, or respiratory insufficiency. While radiologically inserted gastrostomy (RIG) tube placement may be an option, further studies are required to determine its best timing and appropriateness. This study's objectives were to evaluate the feasibility and outcomes of RIG tube placement in ALS patients over a 90-day follow-up period through the assessment and primary palliative care provided by the multidisciplinary team. This retrospective study reviewed the placement of 16 or 18 French RIG-tube without intubation or endoscopy for 36 ALS patients at a single center between April 2019 and December 2021. Measures included ALS Functional Rating Scale-Revised (ALSFRS-R) scores to determine the ALS stage. Demographic, clinical, procedural, and follow-up data were reviewed. Results showed that the RIG tube placement had a low rate of minor adverse events (11%) and no major procedure-related adverse events. The mean ALSFRS-R score at the time of procedure in subjects who died within 90 days was lower than of those alive beyond 90 days (P = .04). This study found that RIG-tube placement is a safe and effective way to manage dysphagia in ALS patients and highlights the importance of educating members of the multidisciplinary clinic in palliative care principles to determine the appropriateness of RIG tube placement.
肌萎缩侧索硬化症(ALS)是一种神经退行性疾病,中位生存期约为 3 年。肌萎缩侧索硬化症多学科团队可以为患者提供初级姑息治疗,并改善治疗效果和生活质量。体重明显减轻或呼吸功能不全的患者可考虑插入喂食管。虽然放射学插入胃造瘘管(RIG)可能是一种选择,但仍需进一步研究以确定其最佳时机和适宜性。本研究的目的是通过多学科团队提供的评估和基本姑息治疗,评估在 90 天随访期内为 ALS 患者置入 RIG 管的可行性和效果。这项回顾性研究回顾了 2019 年 4 月至 2021 年 12 月期间在一个中心为 36 名 ALS 患者置入 16 或 18 法式 RIG 管的情况,没有进行插管或内窥镜检查。研究措施包括 ALS 功能评定量表-修订版(ALSFRS-R)评分,以确定 ALS 分期。审查了人口统计学、临床、程序和随访数据。结果显示,RIG置管的轻微不良事件发生率较低(11%),且无重大手术相关不良事件。90 天内死亡的受试者在手术时的平均 ALSFRS-R 评分低于 90 天后存活的受试者(P = .04)。这项研究发现,RIG 置管是治疗 ALS 患者吞咽困难的一种安全有效的方法,并强调了对多学科诊所成员进行姑息治疗原则教育的重要性,以确定 RIG 置管是否合适。
{"title":"Radiologically Inserted Gastrostomy Tube Placement Guided by the Assessment and Primary Palliative Care Provided by an Amyotrophic Lateral Sclerosis Multidisciplinary Clinic: A Single-Arm Retrospective Clinical Study.","authors":"Carolina Parra-Cantu, Jennifer M Martinez-Thompson, Forrest B Linch, Tasha L Welch, Claudia Z Chou, Adele K Pattinson, Nathan P Staff, Melissa Neisen","doi":"10.1177/10499091231180553","DOIUrl":"10.1177/10499091231180553","url":null,"abstract":"<p><p>Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease with a median survival of about 3 years. An ALS multidisciplinary team can provide primary palliative care and improve outcomes and quality of life for patients. Feeding tube insertion may be considered for patients with significant weight loss, or respiratory insufficiency. While radiologically inserted gastrostomy (RIG) tube placement may be an option, further studies are required to determine its best timing and appropriateness. This study's objectives were to evaluate the feasibility and outcomes of RIG tube placement in ALS patients over a 90-day follow-up period through the assessment and primary palliative care provided by the multidisciplinary team. This retrospective study reviewed the placement of 16 or 18 French RIG-tube without intubation or endoscopy for 36 ALS patients at a single center between April 2019 and December 2021. Measures included ALS Functional Rating Scale-Revised (ALSFRS-R) scores to determine the ALS stage. Demographic, clinical, procedural, and follow-up data were reviewed. Results showed that the RIG tube placement had a low rate of minor adverse events (11%) and no major procedure-related adverse events. The mean ALSFRS-R score at the time of procedure in subjects who died within 90 days was lower than of those alive beyond 90 days (<i>P</i> = .04). This study found that RIG-tube placement is a safe and effective way to manage dysphagia in ALS patients and highlights the importance of educating members of the multidisciplinary clinic in palliative care principles to determine the appropriateness of RIG tube placement.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"516-526"},"PeriodicalIF":1.9,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9933976","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01Epub Date: 2023-05-22DOI: 10.1177/10499091231178503
Lori Constantine, Danielle DeCicco, Roger D Carpenter, Stephanie Pockl, Katherine B Seachrist, R Osvaldo Navia
Background: Coronavirus 19 (COVID-19) affected healthcare workers (HCW) in ways more than increasing the volume of patients needing care. Increased numbers of patients at younger ages required support with extracorporeal membrane oxygenation (ECMO). Providing this care requires an interdisciplinary team.
Aim: This study explored the experiences of HCW caring for patients with COVID-19 on ECMO.
Methods: Face-to-face semi-structured interviews were conducted via videoconferencing, and transcript comparison was used for the analysis.
Findings: Open coding of the data generated 7 categories including (1) fearing the unknown, (2) confronting challenges in patient and/or family interactions, (3) encountering barriers to providing care, (4) facing moral distress, (5) working through exhaustion, (6) persevering by strengthening teamwork, (7) and acknowledging frustration with non-believers.
Discussion: HCW balanced pessimism and optimism while caring for patient with COVID-19 on ECMO. They used negative experiences caring for these patients to strength teamwork and bonding among peers.
Conclusion: The practice implications for caring for patients with COVID-19 on ECMO include viligance by clinician and organization to protect the wellbeing of healthcare providers, particularly in ICU and ECMO units were moral distress and burnout can be high.
{"title":"Healthcare Providers' Experiences of Caring for Patients With COVID-19 Requiring Extracorporeal Membrane Oxygenation Support.","authors":"Lori Constantine, Danielle DeCicco, Roger D Carpenter, Stephanie Pockl, Katherine B Seachrist, R Osvaldo Navia","doi":"10.1177/10499091231178503","DOIUrl":"10.1177/10499091231178503","url":null,"abstract":"<p><strong>Background: </strong>Coronavirus 19 (COVID-19) affected healthcare workers (HCW) in ways more than increasing the volume of patients needing care. Increased numbers of patients at younger ages required support with extracorporeal membrane oxygenation (ECMO). Providing this care requires an interdisciplinary team.</p><p><strong>Aim: </strong>This study explored the experiences of HCW caring for patients with COVID-19 on ECMO.</p><p><strong>Methods: </strong>Face-to-face semi-structured interviews were conducted via videoconferencing, and transcript comparison was used for the analysis.</p><p><strong>Findings: </strong>Open coding of the data generated 7 categories including (1) fearing the unknown, (2) confronting challenges in patient and/or family interactions, (3) encountering barriers to providing care, (4) facing moral distress, (5) working through exhaustion, (6) persevering by strengthening teamwork, (7) and acknowledging frustration with non-believers.</p><p><strong>Discussion: </strong>HCW balanced pessimism and optimism while caring for patient with COVID-19 on ECMO. They used negative experiences caring for these patients to strength teamwork and bonding among peers.</p><p><strong>Conclusion: </strong>The practice implications for caring for patients with COVID-19 on ECMO include viligance by clinician and organization to protect the wellbeing of healthcare providers, particularly in ICU and ECMO units were moral distress and burnout can be high.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"568-573"},"PeriodicalIF":1.9,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10203850/pdf/10.1177_10499091231178503.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9574109","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01Epub Date: 2023-07-05DOI: 10.1177/10499091231188693
Benjamin Gallo Marin, Rocío Oliva, Gowri Anandarajah
Context: Hospice services are underutilized by the Latino community in the United States. Previous research has identified that language is a key barrier contributing to disparities. However, very few studies have been conducted in Spanish to specifically explore other barriers to hospice enrollment or values related to end-of-life (EOL) care in this community. Here, we remove the language barrier in order to gain an in-depth understanding of what members of the diverse Latino community in one state in the USA considers high quality EOL and barriers to hospice. Methods: This exploratory semi-structured individual interview study of Latino community members was conducted in Spanish. Interviews were audio-recorded, transcribed verbatim and translated to English. Transcripts were analyzed by three researchers, using a grounded-theory approach to identify themes and sub-themes. Main Findings: Six major themes emerged: (1) concept of "a good death"-spiritual peace, family/community connection, no burdens left behind; (2) centrality of family; (3) lack of knowledge about hospice/palliative care; (4) Spanish language as critical; (5) communication style differences; and (6) necessity for cultural understanding. The central theme of "a good death" was closely linked to having the entire family physically and emotionally present. The four other themes represent interrelated, compounding barriers to achieving this "good death." Principal Conclusions: Healthcare providers and the Latino community can work together to decrease hospice utilization disparities by: actively involving family at every step; addressing misconceptions regarding hospice; conducting important conversations in Spanish; and improving provider skills in culturally sensitive care, including communication style.
{"title":"Exploring the Beliefs, Values, and Understanding of Quality End-of-Life Care in the Latino Community: A Spanish-Language Qualitative Study.","authors":"Benjamin Gallo Marin, Rocío Oliva, Gowri Anandarajah","doi":"10.1177/10499091231188693","DOIUrl":"10.1177/10499091231188693","url":null,"abstract":"<p><p><b>Context:</b> Hospice services are underutilized by the Latino community in the United States. Previous research has identified that language is a key barrier contributing to disparities. However, very few studies have been conducted in Spanish to specifically explore other barriers to hospice enrollment or values related to end-of-life (EOL) care in this community. Here, we remove the language barrier in order to gain an in-depth understanding of what members of the diverse Latino community in one state in the USA considers high quality EOL and barriers to hospice. <b>Methods:</b> This exploratory semi-structured individual interview study of Latino community members was conducted in Spanish. Interviews were audio-recorded, transcribed verbatim and translated to English. Transcripts were analyzed by three researchers, using a grounded-theory approach to identify themes and sub-themes. <b>Main Findings:</b> Six major themes emerged: (1) concept of \"a good death\"-spiritual peace, family/community connection, no burdens left behind; (2) centrality of family; (3) lack of knowledge about hospice/palliative care; (4) Spanish language as critical; (5) communication style differences; and (6) necessity for cultural understanding. The central theme of \"a good death\" was closely linked to having the entire family physically and emotionally present. The four other themes represent interrelated, compounding barriers to achieving this \"good death.\" <b>Principal Conclusions:</b> Healthcare providers and the Latino community can work together to decrease hospice utilization disparities by: actively involving family at every step; addressing misconceptions regarding hospice; conducting important conversations in Spanish; and improving provider skills in culturally sensitive care, including communication style.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"508-515"},"PeriodicalIF":1.9,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10132848","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01Epub Date: 2023-06-08DOI: 10.1177/10499091231181567
Lindsay M Gibbon, Laura Buck, Lauren Schmidt, Jori F Bogetz, Amy Trowbridge
Background: Residents often feel unprepared to care for dying patients and may benefit from more training. Little is known about factors in the clinical setting that promote resident learning about end of life (EOL) care.
Objectives: This qualitative study aimed to characterize the experiences of residents caring for dying patients and elucidate the impact of emotional, cultural, and logistical factors on learning.
Methods: 6 US internal medicine and 8 pediatric residents who had cared for at least 1 dying patient completed a semi-structured one-on-one interview between 2019 and 2020. Residents described an experience caring for a dying patient including their confidence in clinical skills, emotional experience, role within the interdisciplinary team, and perspective on how to improve their education. Interviews were transcribed verbatim and investigators conducted content analysis to generate themes.
Results: 3 themes (with subthemes) emerged: (1) experiencing strong emotion or tension (loss of patient personhood, emerging professional identity, emotional dissonance); (2) processing the experience (innate resilience, team support); and (3) recognition of a new perspective or skill (bearing witness, meaning making, recognizing biases, emotional work of doctoring).
Conclusions: Our data suggests a model for the process by which residents learn affective skills critical to EOL care: residents (1) notice strong emotion, (2) reflect on the meaning of the emotion, and (3) crystallize this reflection into a new perspective or skill. Educators can use this model to develop educational methods that emphasize normalization of physician emotions and space for processing and professional identity formation.
{"title":"\"It's a Heavy Thing to Carry:\" Internal Medicine and Pediatric Resident Experiences Caring for Dying Patients.","authors":"Lindsay M Gibbon, Laura Buck, Lauren Schmidt, Jori F Bogetz, Amy Trowbridge","doi":"10.1177/10499091231181567","DOIUrl":"10.1177/10499091231181567","url":null,"abstract":"<p><strong>Background: </strong>Residents often feel unprepared to care for dying patients and may benefit from more training. Little is known about factors in the clinical setting that promote resident learning about end of life (EOL) care.</p><p><strong>Objectives: </strong>This qualitative study aimed to characterize the experiences of residents caring for dying patients and elucidate the impact of emotional, cultural, and logistical factors on learning.</p><p><strong>Methods: </strong>6 US internal medicine and 8 pediatric residents who had cared for at least 1 dying patient completed a semi-structured one-on-one interview between 2019 and 2020. Residents described an experience caring for a dying patient including their confidence in clinical skills, emotional experience, role within the interdisciplinary team, and perspective on how to improve their education. Interviews were transcribed verbatim and investigators conducted content analysis to generate themes.</p><p><strong>Results: </strong>3 themes (with subthemes) emerged: (1) experiencing strong emotion or tension (loss of patient personhood, emerging professional identity, emotional dissonance); (2) processing the experience (innate resilience, team support); and (3) recognition of a new perspective or skill (bearing witness, meaning making, recognizing biases, emotional work of doctoring).</p><p><strong>Conclusions: </strong>Our data suggests a model for the process by which residents learn affective skills critical to EOL care: residents (1) notice strong emotion, (2) reflect on the meaning of the emotion, and (3) crystallize this reflection into a new perspective or skill. Educators can use this model to develop educational methods that emphasize normalization of physician emotions and space for processing and professional identity formation.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"492-500"},"PeriodicalIF":1.9,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9646290","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01Epub Date: 2023-08-03DOI: 10.1177/10499091231190354
Deborah Swiderski, Rodrigo Ng Taniguchi, Elizabeth Chuang
Background: Advance Care Planning (ACP) has not reliably improved care for patients at end-of-life. Serious Illness Conversations when patients are in the late stages of chronic illness might be more effective to address patients' goals. The Serious Illness Conversation (SIC) Guide has been helpful but was not developed for use in safety-net settings serving racial and ethnic minority populations.
Methods: Physicians were recruited to complete a needs assessment survey prior to training in the use of the SIC Guide.
Results: Of the 44 physician participants, most were female (82%) and white, non-Hispanic (62%). Less than half of respondents rated themselves as skilled or very skilled in basic serious illness communication related tasks such as setting up goals of care discussions (44%), assessing informational preferences (42%), sharing prognosis (38%), exploring goals for future care (49%) and managing family dynamics (44%). Respondents reported lower skill levels in conducting goals of care conversations via telehealth and establishing trust in racially discordant provider/patient pairs.
Conclusions: Most participants expressed the need for further training in critical end-of-life communications skills, including help with encounters with racial and/or language discordance. This may help to explain the failure of ACP discussions to reliably result in appropriate end-of-life care.
{"title":"Are Safety-Net Primary Care Physicians Prepared to Engage in Serious Illness Conversations?","authors":"Deborah Swiderski, Rodrigo Ng Taniguchi, Elizabeth Chuang","doi":"10.1177/10499091231190354","DOIUrl":"10.1177/10499091231190354","url":null,"abstract":"<p><strong>Background: </strong>Advance Care Planning (ACP) has not reliably improved care for patients at end-of-life. Serious Illness Conversations when patients are in the late stages of chronic illness might be more effective to address patients' goals. The Serious Illness Conversation (SIC) Guide has been helpful but was not developed for use in safety-net settings serving racial and ethnic minority populations.</p><p><strong>Methods: </strong>Physicians were recruited to complete a needs assessment survey prior to training in the use of the SIC Guide.</p><p><strong>Results: </strong>Of the 44 physician participants, most were female (82%) and white, non-Hispanic (62%). Less than half of respondents rated themselves as skilled or very skilled in basic serious illness communication related tasks such as setting up goals of care discussions (44%), assessing informational preferences (42%), sharing prognosis (38%), exploring goals for future care (49%) and managing family dynamics (44%). Respondents reported lower skill levels in conducting goals of care conversations via telehealth and establishing trust in racially discordant provider/patient pairs.</p><p><strong>Conclusions: </strong>Most participants expressed the need for further training in critical end-of-life communications skills, including help with encounters with racial and/or language discordance. This may help to explain the failure of ACP discussions to reliably result in appropriate end-of-life care.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"486-491"},"PeriodicalIF":1.9,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9918167","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-04-17DOI: 10.1177/10499091241246520
John R. Reed, Stephanie K. Parks, Antony Kaniaru, Justin Hefley, Young Yauger, Jeremy V. Edwards, Derrick C. Glymph
The goal of palliative care is to focus on the holistic needs of the patient and their family versus the pathology of the patient’s diagnosis to reduce the stress of illness. U.S. servicemembers deployed to austere environments worldwide have significantly less access to palliative care than in military treatment facilities in the U.S. Preparation for future conflicts introduces the concept of prolonged medical management for an environment where urgent casualty evacuation is impossible. Ketamine is currently widely used for analgesia and anesthesia in the care of military service members and its use has increased in combat zones of Iraq and Afghanistan due to the favorable preservation of respiratory function, minimal changes in hemodynamics, and lower pain scores compared to opioids. Ketamine acts as a non-competitive antagonist on N-methyl-D aspartate (NMDA) receptors. Its anesthesia and analgesic effects are complex and include both presynaptic and postsynaptic neurons in brain and spinal cord. The use of palliative care to minimize suffering should not be withheld due to the logistical boundaries of austere military environments or lack of guidelines for recommended use. The use of ketamine for palliative care is a new clinical management strategy to provide both sedation and pain management for an acute pain crisis or comfort measures for the terminally ill. This makes ketamine an attractive consideration for palliative care when managing critically wounded patients for an extended time.
{"title":"Ketamine Use for Palliative Care in the Austere Environment: Is Ketamine the Path Forward for Palliative Care","authors":"John R. Reed, Stephanie K. Parks, Antony Kaniaru, Justin Hefley, Young Yauger, Jeremy V. Edwards, Derrick C. Glymph","doi":"10.1177/10499091241246520","DOIUrl":"https://doi.org/10.1177/10499091241246520","url":null,"abstract":"The goal of palliative care is to focus on the holistic needs of the patient and their family versus the pathology of the patient’s diagnosis to reduce the stress of illness. U.S. servicemembers deployed to austere environments worldwide have significantly less access to palliative care than in military treatment facilities in the U.S. Preparation for future conflicts introduces the concept of prolonged medical management for an environment where urgent casualty evacuation is impossible. Ketamine is currently widely used for analgesia and anesthesia in the care of military service members and its use has increased in combat zones of Iraq and Afghanistan due to the favorable preservation of respiratory function, minimal changes in hemodynamics, and lower pain scores compared to opioids. Ketamine acts as a non-competitive antagonist on N-methyl-D aspartate (NMDA) receptors. Its anesthesia and analgesic effects are complex and include both presynaptic and postsynaptic neurons in brain and spinal cord. The use of palliative care to minimize suffering should not be withheld due to the logistical boundaries of austere military environments or lack of guidelines for recommended use. The use of ketamine for palliative care is a new clinical management strategy to provide both sedation and pain management for an acute pain crisis or comfort measures for the terminally ill. This makes ketamine an attractive consideration for palliative care when managing critically wounded patients for an extended time.","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":"23 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140610687","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-04-17DOI: 10.1177/10499091241247841
Thomas F. Osborne, Zachary P. Veigulis, Anna Ware, David M. Arreola, Catherine Curtin, Marianne Yeung
BackgroundTerminally ill patients benefit from earlier engagement in palliative care. However, this does not always occur. This project assessed if an already available risk score, the Care Assessment Needs (CAN) score, would be able to identify patients at greatest risk for mortality within 30 days of hospital admission within the Veterans Health Administration (VHA).MethodsThe cohort of this retrospective analysis included all VA acute are patients over 18 years of age with a recent CAN score. The CAN score is an automatically calculated VA risk score that was repurposed to determine if it could predict risk of mortality after acute care admission. Univariate logistic regression was performed to obtain the probability of mortality within 30 days of admission, based on their CAN score.Results298,467 patient records were assessed from January 1, 2019, to December 31, 2019. There was 6% mortality after 30 days of admissions, and 17% mortality within 1-year post-admission. Mean CAN score was 65 (SD: 29). On average, each incremental increase in the CAN score increased the probability of mortality by 7%. Patients with a CAN score of 90 had a 10% probability of 30-day post-admission mortality.ConclusionA readily available risk score, automatically calculated from EHR data, was able to identify patients at high risk for 30-day mortality in the acute care setting. Next steps will be to assess how the CAN score can be utilized to in improve end of life care for high-risk hospitalized Veterans.
{"title":"Automated Electronic Health Record Score to Predict Mortality Risk at the US Department of Veterans Affairs","authors":"Thomas F. Osborne, Zachary P. Veigulis, Anna Ware, David M. Arreola, Catherine Curtin, Marianne Yeung","doi":"10.1177/10499091241247841","DOIUrl":"https://doi.org/10.1177/10499091241247841","url":null,"abstract":"BackgroundTerminally ill patients benefit from earlier engagement in palliative care. However, this does not always occur. This project assessed if an already available risk score, the Care Assessment Needs (CAN) score, would be able to identify patients at greatest risk for mortality within 30 days of hospital admission within the Veterans Health Administration (VHA).MethodsThe cohort of this retrospective analysis included all VA acute are patients over 18 years of age with a recent CAN score. The CAN score is an automatically calculated VA risk score that was repurposed to determine if it could predict risk of mortality after acute care admission. Univariate logistic regression was performed to obtain the probability of mortality within 30 days of admission, based on their CAN score.Results298,467 patient records were assessed from January 1, 2019, to December 31, 2019. There was 6% mortality after 30 days of admissions, and 17% mortality within 1-year post-admission. Mean CAN score was 65 (SD: 29). On average, each incremental increase in the CAN score increased the probability of mortality by 7%. Patients with a CAN score of 90 had a 10% probability of 30-day post-admission mortality.ConclusionA readily available risk score, automatically calculated from EHR data, was able to identify patients at high risk for 30-day mortality in the acute care setting. Next steps will be to assess how the CAN score can be utilized to in improve end of life care for high-risk hospitalized Veterans.","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":"81 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140610686","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}