Kerri A Qualls, Radion Svynarenko, Melanie J Cozad, Jessica Keim-Malpass, Guoping Huang, Lisa C Lindley
{"title":"Geographic Information Systems Utilization in Pediatric End-of-Life Research: A Scoping Review.","authors":"Kerri A Qualls, Radion Svynarenko, Melanie J Cozad, Jessica Keim-Malpass, Guoping Huang, Lisa C Lindley","doi":"10.1177/10499091231165276","DOIUrl":"10.1177/10499091231165276","url":null,"abstract":"<p><p>Currently, little is known about how geographic information systems (GIS) has been utilized to study end-of-life care in pediatric populations. The purpose of this review was to collect and examine the existing evidence on how GIS methods have been used in pediatric end-of-life research over the last 20 years. Scoping review method was used to summarize existing evidence and inform research methods and clinical practice was used. The Preferred Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA) was utilized. The search resulted in a final set of 17 articles. Most studies created maps for data visualization and used ArcGIS as the primary software for analysis. The scoping review revealed that GIS methodology has been limited to mapping, but that there is a significant opportunity to expand the use of this methodology for pediatric end-of-life care research.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"216-227"},"PeriodicalIF":1.5,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10825508/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9363529","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}
Gabriel Patarroyo-Aponte, Saeed Shoar, Deptmer M Ashley, Ali Noorbaksh, Dev Patel, Alisha Y Young, Bindu H Akkanti, Mark T Warner, Maria M Patarroyo-Aponte, Biswajit Kar, Igor D Gregoric, Caroline Ha, Bela Patel
{"title":"The Role of Palliative Care Consultation in Withdrawal of Life-Sustaining Treatment among ICU Patients Receiving Veno-Venous Extracorporeal Membrane Oxygenation (VV-ECMO): A Retrospective Case-Control Study.","authors":"Gabriel Patarroyo-Aponte, Saeed Shoar, Deptmer M Ashley, Ali Noorbaksh, Dev Patel, Alisha Y Young, Bindu H Akkanti, Mark T Warner, Maria M Patarroyo-Aponte, Biswajit Kar, Igor D Gregoric, Caroline Ha, Bela Patel","doi":"10.1177/10499091231173092","DOIUrl":"10.1177/10499091231173092","url":null,"abstract":"<p><p><i><b>Background:</b></i> Extracorporeal membrane oxygenation (ECMO) has extended the survivability of critically ill patients beyond their unsupported prognosis and has widened the timeframe for making an informed decision about the goal of care. However, an extended time window for survival does not necessarily translate into a better outcome and the sustaining treatment is ultimately withdrawn in many patients. Emerging evidence has implicated the determining role of palliative care consult (PCC) in direction of the care that critically ill patients receive. <i><b>Objective:</b></i> To evaluate the impact of PCC in withdrawal of life-sustaining treatment (WOLST) among critically ill patients, who were placed on venovenous ECMO (VV-ECMO) at the intensive care unit (ICU) of a tertiary care hospital. <i><b>Methods:</b></i> In a retrospective observational study, electronic medical records of 750 patients admitted to the ICU of our hospital between January 1, 2015, and October 31, 2021, were reviewed. Data was collected for patients on VV-ECMO, for whom WOLST was withdrawn during the ICU stay. Clinical characteristics and the underlying reasons for WOLST were compared between those who received PCC (PCC group) and those who did not (non-PCC group). <i><b>Results:</b></i> A total of 95 patients were included in our analysis, 63 in the PCC group and 32 in the non-PCC group. The average age of the study population was 48.8 ± 12.6 years, and 64.2% were male. There was no statistically significant difference between the two groups in terms of demographics or clinical characteristics at the time of ICU admission. The average duration of ICU stay and VV-ECMO were 14.1 ± 19.9 days and 9.4 ± 16.6 days, respectively. The number of PCC visits was correlated with the length of ICU stay<i>.</i> The average duration of ICU stay (40.3 ± 33.2 days vs 27.8 ± 19.3 days, P = .05) and ECMO treatment (31.9 ± 27 days vs 18.6 ± 16.1 days, P = .01) were significantly longer in patients receiving PCC than those not receiving PCC. However, the frequency of life sustaining measures or the underlying reasons for WOLST did not significantly differ between the two groups (P > .05). <i><b>Conclusion:</b></i> Among ICU patients requiring ECMO support, longer duration of ICU stay and treatment with a higher number of life-sustaining measures seemed to be correlated with the number of PCC visits. The underlying reasons for WOLST seem not to be affected by PCC.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"150-157"},"PeriodicalIF":1.9,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10751975/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9730006","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}
Beate Apolinarski, Carolin Huperz, Hanna A A Röwer, Nils Schneider, Stephanie Stiel, Franziska A Herbst
{"title":"Expert Perspectives on the Additional Benefit of Day Hospices and Palliative Day Care Clinics in Germany: A Qualitative Approach.","authors":"Beate Apolinarski, Carolin Huperz, Hanna A A Röwer, Nils Schneider, Stephanie Stiel, Franziska A Herbst","doi":"10.1177/10499091231168574","DOIUrl":"10.1177/10499091231168574","url":null,"abstract":"<p><p><b>Background:</b> In Germany, hospice and palliative care is well covered through inpatient, outpatient, and home-based care services. It is unknown if, and to what extent, there is a need for additional day care services to meet the specific needs of patients and caregivers. <b>Methods:</b> Two day hospices and two palliative day care clinics were selected. In the first step, two managers from each facility (<i>n</i> = 8) were interviewed by telephone, using a semi-structured interview guide. In the second step, four focus groups were conducted, each with three to seven representatives of hospice and palliative care from the facilities' hospice and palliative care networks. Interviews and focus groups were audio recorded, transcribed verbatim and analyzed using qualitative content analysis. <b>Results:</b> The interviewed experts perceived day care services as providing additional patient and caregiver benefits. Specifically, the services were perceived to meet patient needs for social interaction and bundled treatments, especially for patients who did not fit into inpatient settings (due to, e.g., their young age or a lack of desire for inpatient admission). The services were also perceived to meet caregiver needs for support, providing short-term relief for the home care situation. <b>Conclusions:</b> The results suggest that inpatient, outpatient, and home-based hospice and palliative care services do not meet the palliative care needs of all patients. Although the population that is most likely to benefit from day care services is assumed to be relatively small, such services may meet the needs of certain patient groups more effectively than other forms of care.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"167-172"},"PeriodicalIF":1.9,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10751967/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9252381","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}
{"title":"A Novel Education System to Createcustomized Primary Palliative Care Curricula for Training Programs.","authors":"Maie El-Sourady, Sara Martin, Thomas Carroll","doi":"10.1177/10499091231172498","DOIUrl":"10.1177/10499091231172498","url":null,"abstract":"<p><p>Clinicians need palliative care (PC) skills to provide good patient care. Primary PC (PPC) is the PC knowledge and skills provided by non-PC specialists and are distinct from specialist PC (SPC), the complex interventions provided by specialty trained clinicians. There is no consensus as to the specific PPC knowledge and skills that should be taught or the methods that should be used. We describe an educational system that incorporates a suite of tools that PC educators can easily adapt to the PC educational requests of training programs to evaluate the PPC educational needs of training programs and then to create customized educational programs that regularly adjusts to the input of trainees and faculty. We hope others can use this program to decrease the burden on the PC educators and provide a tailored PPC education program for training programs within their institutions.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"211-215"},"PeriodicalIF":1.9,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10751965/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9423461","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}
Daniel Kadden, Madeline Weber, Lori Herbst, Danielle E Weber
{"title":"The Impact of Words: Multisource Feedback Provides Students With a Deeper Understanding and Reflection on Goals of Care Discussions.","authors":"Daniel Kadden, Madeline Weber, Lori Herbst, Danielle E Weber","doi":"10.1177/10499091231175907","DOIUrl":"10.1177/10499091231175907","url":null,"abstract":"<p><p><b>Background:</b> Physician communication during goals of care (GOC) discussions impact experiences for patients and families at end-of-life (EOL). Simulation allows training in a safe environment where feedback from simulated patients (SP), clinicians, and self-reflection can be incorporated. <b>Objectives:</b> To determine if multisource feedback from SP scenarios enriches feedback provided to trainees. <b>Design:</b> Fourth-medical students participated in two SP GOC discussions during an advanced care planning (ACP) curriculum. Students received feedback from SPs and faculty and completed a video review with self-reflection. <b>Setting and Subjects:</b> Forty-seven fourth-year medical students at the University of Cincinnati College of Medicine participated in the curriculum from 2019-2021. <b>Measurements:</b> An inductive thematic analysis of the narrative data was performed examining all sources of feedback from the SP sessions. <b>Results:</b> Six themes emerged from the feedback: the warning shot: words to say and why it helps; acknowledging emotion: verbal vs non-verbal responses; organization: necessity of a clear path; body language: adding to and distracting from the conversation; terminology to avoid: what jargon encompasses and how it impacts patients; and silence: perceived importance by everyone. SP feedback focused on the personal emotional impact of a student's word choice and body language. Faculty feedback focused on specific learning points through examples from the conversation and expanded to hypothetical scenarios. Student self-reflection after video review allowed students to see challenges that they did not notice while immersed in the encounter. <b>Conclusion:</b> Multisource feedback from simulated GOC discussions provides unique insights for students to guide their development in leading difficult conversations.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"173-178"},"PeriodicalIF":1.9,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9911787","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}
Kim Sadler, Saadiya Khan, Khaled AlGhamdi, Hamad Hussain Alyami, Lori Nancarrow
{"title":"Addressing 10 Myths About Pediatric Palliative Care.","authors":"Kim Sadler, Saadiya Khan, Khaled AlGhamdi, Hamad Hussain Alyami, Lori Nancarrow","doi":"10.1177/10499091231174202","DOIUrl":"10.1177/10499091231174202","url":null,"abstract":"<p><p>With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity and lengthy hospitalizations, which can be associated with a poorer quality of life. This is where pediatric palliative care (PPC) can play a significant role. PPC is a specialty of healthcare that focuses on the prevention and relief of suffering in children with serious conditions. Unfortunately, despite the well-identified need for PPC services across pediatric specialties, multiple misconceptions persist. Common myths about palliative care are identified and deconstructed in light of the most recent evidenced-based references in the field to provide guidance to healthcare providers to address these. PPC is often associated with end-of-life care, loss of hope, and cancer. Some healthcare providers and parents also believe that information like diagnosis should be withheld from children for their emotional protection. These examples of misconceptions hinder the integration of pediatric palliative care and its additional layer of support and clinical expertise. PPC providers have advanced communication skills, are able to instill hope in the face of uncertainty, are trained to initiate and implement individualized pain and symptom management plans, and understand how to improve the quality of life in children with serious illnesses. Improved awareness about the scope of PPC is needed to ensure that children benefit from the maximum expertise and support throughout their complex health trajectories.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"193-202"},"PeriodicalIF":1.9,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9763564","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}
Alana Sagin, Dorene Balmer, Suzanne Rose, Rosie Musheno, Jennifer M Olenik, Laura Dingfield, C Jessica Dine, Nadia L Bennett
{"title":"Evaluation of a Palliative Care Longitudinal Curriculum for Medical Students Using the Context-Input-Process-Product Model.","authors":"Alana Sagin, Dorene Balmer, Suzanne Rose, Rosie Musheno, Jennifer M Olenik, Laura Dingfield, C Jessica Dine, Nadia L Bennett","doi":"10.1177/10499091231165504","DOIUrl":"10.1177/10499091231165504","url":null,"abstract":"<p><p>Palliative care (PC) longitudinal curricula are increasingly being recognized as important in Undergraduate Medical Education (UME). They are however, not yet commonplace, and where they do exist may be implemented without a systematic, prospective approach to curriculum evaluation. This paper describes an implementation of a new longitudinal curriculum at the Perelman School of Medicine (PSOM) at the University of Pennsylvania. We used the Context Input Process Product (CIPP) model, a holistic evaluation model, to assess the local environment, design the curriculum, guide the improvement process, and evaluate outcomes. Comprehensive models such as CIPP provide a more robust approach to curriculum evaluation than outcomes-only models and may be of use to other programs who are implementing new curricula or improving upon existing programs.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"158-166"},"PeriodicalIF":1.9,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10751966/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9509340","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}
Sharon E Bigger, Jean Croce Hemphill, Trizah Njoroge, Katherine Doyon, Lee Glenn
{"title":"Black Americans, hospitalization, and advance care planning: Structural vulnerability in Home Health Value-Based Purchasing.","authors":"Sharon E Bigger, Jean Croce Hemphill, Trizah Njoroge, Katherine Doyon, Lee Glenn","doi":"10.1177/10499091231176281","DOIUrl":"10.1177/10499091231176281","url":null,"abstract":"<p><p>Skilled home health (HH) is the largest long-term care setting and the fastest-growing site of healthcare in the United States (U.S.). Home Health Value-Based Purchasing (HHVBP) is a structure of Medicare that penalizes U.S. HH agencies for high hospitalization rates. Prior studies have shown inconsistent evidence about associations of race with hospitalization rates in HH. Evidence supports that Black or African Americans are less likely to participate in advance care planning (ACP), or to complete written advance directives, which could affect their potential for hospitalization when nearing end of life. In this quasi-experimental study, we used Medicare administrative datasets, the Weighted Acute Care Services Use Rates (WACSUR) score, and the Advance Care Planning Protocol (ACPP) score to determine whether the proportion of Black HH patients in the U.S. was correlated with acute care use rates and the robustness of agency protocols on ACP. We used primary and secondary data from the U.S. from 2016-2020. We included Medicare-certified HH agencies. Spearman's correlation coefficient was used. We found a statistical trend showing that the greater proportion of Black patients enrolled in a HH agency, the greater tendency to have a high hospitalization rate. Our findings suggest that HHVBP may encourage patient selection and exacerbate health disparities. Our findings support recommendations for alternative measures of quality in HH to include measures of goal-concordant care coordination when patients are denied admission to HH.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"140-149"},"PeriodicalIF":1.9,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9621183","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}
Andrea Bovero, Rossana Botto, Elena Mellano, Francesco Gottardo, Paola Berchialla, Sara Carletto, Giuliano C Geminiani
{"title":"Loss of Personal Autonomy and Dignity-Related Distress in End-Of-Life Cancer Patients.","authors":"Andrea Bovero, Rossana Botto, Elena Mellano, Francesco Gottardo, Paola Berchialla, Sara Carletto, Giuliano C Geminiani","doi":"10.1177/10499091231166373","DOIUrl":"10.1177/10499091231166373","url":null,"abstract":"<p><p>The objective of this cross-sectional study is to investigate Dignity-Related Loss of Personal Autonomy (DR-LPA) intended as loss of relational independence causing dignity-related distress. Moreover, it analyzes its possible relationships with demoralization, spirituality, quality of life, hope, and coping styles in a sample composed of 207 end-of-life cancer patients. These variables have been assessed through the following rating scales: Patient Dignity Inventory - Italian version, Demoralization Scale - Italian version, Functional Assessment of Cancer Therapy Scale - General Measure, Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being, Brief Coping Orientation to Problem Experienced, and Herth Hope Index. The results have shown that most of the DR-LPA items were considered a problem by most patients. Functional, social, emotional, and spiritual wellbeing, disheartenment, age, and sex emerged as significant predictors of DR-LPA. In conclusion, this study showed that DR-LPA can be a relevant concern for patients at the end-of-life and for this reason it becomes necessary for psychosocial provides to consider it to deliver better dignity conserving care.</p>","PeriodicalId":50810,"journal":{"name":"American Journal of Hospice & Palliative Medicine","volume":" ","pages":"179-186"},"PeriodicalIF":1.9,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9192985","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}