Christine E Alvarado, Stephanie G Worrell, Aaron E Tipton, Max Coffey, Boxiang Jiang, Philip A Linden, Christopher W Towe
{"title":"The Role of Structured Goals of Care Discussions in Critically Ill Thoracic Surgery Patients.","authors":"Christine E Alvarado, Stephanie G Worrell, Aaron E Tipton, Max Coffey, Boxiang Jiang, Philip A Linden, Christopher W Towe","doi":"10.1177/08258597241274163","DOIUrl":"10.1177/08258597241274163","url":null,"abstract":"<p><p><b>Objective:</b> The American College of Surgeons recommends structured family meetings (FM) for high-risk surgical patients. We hypothesized that goals of care discussions (GOCD) in the form of an FM, multidisciplinary family meeting (MDFM), or palliative care consult (PCC) would be underutilized in imminently dying thoracic surgery patients. <b>Methods:</b> A retrospective chart review at a tertiary academic medical center was performed on all inpatient mortalities and discharges to hospice after any thoracic surgery operation. The utilization of GOCDs was compared between the 2 groups. Secondary outcomes were length-of-stay, comatose status and ventilator dependence during initial GOCD, and timing of code status change. <b>Results:</b> In total, 56 patients met inclusion criteria: 44 of 56 (78.6%) died and 12 of 56 (21.4%) were discharged to hospice. Most patients had a FM (79.5% mortality vs 100% hospice, <i>P</i> = .29) and few had an MDFM (25.0% mortality vs 25.0% hospice, <i>P</i> = 1.00). Patients discharged to hospice were more likely to have a PCC (66.7% vs 31.2%, <i>P</i> = .03) and less likely to be comatose (16.7% vs 59.1%, <i>P</i> = .009) or ventilator dependent during initial GOCD (16.7% vs 70.5%, <i>P</i> = .001). Among patients who died and were DNR-CC (do not resuscitate-comfort care; 37 of 44), 75.7% died the same day of code status change and 67.6% died within 48 h of initial GOCD. <b>Discussion:</b> Although FMs were common, MDFMs were infrequent. Patients discharged to hospice were more likely to have a PCC. Most deaths occurred shortly after initial GOCD and most code status changes occurred on day-of-death. This data suggest an opportunity to improve GOCDs in critically ill thoracic surgery patients.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"333-339"},"PeriodicalIF":1.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142037700","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}
{"title":"Barriers and Facilitators of Palliative Care in Older Adults With Heart Failure: A Qualitative Content Analysis.","authors":"Farzaneh Gholami Motlagh, Monir Nobahar, Masoud Bahrami","doi":"10.1177/08258597231183316","DOIUrl":"10.1177/08258597231183316","url":null,"abstract":"<p><p><b>Objectives:</b> The progressive and unpredictable course of heart failure (HF) has made the provision of palliative care (PC) services to older adults with HF a serious challenge. This study aimed to explain the barriers and facilitators of PC in older adults with HF. <b>Methods:</b> This qualitative study was conducted using the content analysis approach. A sample of 15 participants, including 6 patients, 2 family caregivers, and 7 healthcare team members (4 nurses, a psychiatric nurse, a nutritionist, and a PC physician) were selected by purposive sampling over 10 months (November 21, 2020 to September 1, 2021). The data were collected using semistructured in-person interviews until data saturation and analyzed with conventional qualitative content analysis. <b>Results:</b> The findings revealed the main category of \"neglecting the provision of PC,\" with 4 subcategories of \"weak organizational structure,\" \"poor social support,\" \"older adults' and healthcare teams' poor knowledge,\" and \"limited financial resources\" as the barriers of PC and the main category of \"enjoying support potentials\" with 3 subcategories of \"the cooperation of the government, benefactors, and nongovernmental organizations,\" \"empathy from the family and relatives,\" and \"benefiting from the presence of healthcare workers\" as PC facilitators. <b>Conclusions:</b> The findings of this study explained the barriers and facilitators of PC in older adults with HF. Removing the barriers and supporting the facilitators give older adults with HF better access to PC. Therefore, to expand PC centers for older adults with HF, health system officials, and policy-makers should pay attention to organizational infrastructures and remove the barriers at organizational, social, educational, and economic levels with the cooperation of governmental organizations, benefactors, and nongovernmental organizations.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"271-281"},"PeriodicalIF":1.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9693491","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}
{"title":"Emergency Preparedness in Philippine Hospices: Insights From a Global Literature Review.","authors":"Jeff Clyde G Corpuz, Aurora M Peñaflor","doi":"10.1177/08258597241276321","DOIUrl":"10.1177/08258597241276321","url":null,"abstract":"<p><p>In a recently published paper, Baker Rogers provided significant insights into enhancing emergency preparedness in hospices. A literature review identified 26 articles focusing on various aspects of hospice emergency preparedness, organized into 6 key themes: Policies and Procedures; Testing/Training/Education; Integration and Coordination; Mitigation; Risk Assessment/Hazard and Vulnerability Analysis; and Regulations. These themes highlight the multifaceted approach required for effective disaster readiness in hospice settings. This correspondence article aims to apply these findings to the Philippine context, suggesting pathways to strengthen the resilience of hospice care during disasters.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"264-265"},"PeriodicalIF":1.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142019430","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}
Mia Helyar, Marisa Eamens, Sandra Coombs, Therese Smeal, Martha Mherekumombe, Tiina Jaaniste
{"title":"Attitudes and Experiences of Community Palliative Care Nurses Regarding Pediatric Home-Based End-of-Life Care: A Statewide Survey.","authors":"Mia Helyar, Marisa Eamens, Sandra Coombs, Therese Smeal, Martha Mherekumombe, Tiina Jaaniste","doi":"10.1177/08258597241284286","DOIUrl":"10.1177/08258597241284286","url":null,"abstract":"<p><p><b>Objectives:</b> Pediatric end-of-life (EOL) care at home is often provided by community palliative care (CPC) nurses who do not specialize in pediatrics. This study aimed to better understand the challenges CPC nurses face when providing EOL care to children at home. <b>Methods:</b> A total of 52 CPC nurses across New South Wales (NSW), Australia, participated in an online survey about their training, attitudes, and experiences regarding the provision of home-based pediatric EOL care. Participants were asked to reflect back over a \"negative\" experience of caring for a child at EOL, where things did not go as well as hoped, and a \"positive\" EOL care experience, where nurses perceived that care of the child and family went well, and respond to questions about these experiences. <b>Results:</b> Confidence of CPC nurses when providing EOL care to pediatric patients was significantly lower than when caring for adults (<i>p</i>'s < .05). Most respondents expressed the desire for more training in pediatric EOL care. Cases identified as negative by CPC nurses did not significantly differ from positive cases in terms of the timing of the referral to CPC, clinical symptoms at EOL, or how well informed the nurses felt. Siblings were present at EOL in 74% of the negative experiences and 86% of the positive experiences, reportedly receiving significantly poorer support in the negative experiences (<i>p </i>= .002). <b>Conclusion:</b> This research contributes to an improved understanding of the challenges associated with home-based pediatric EOL care and highlights potential areas for improvement in CPC service delivery and training.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597241284286"},"PeriodicalIF":1.3,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142331941","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}
Diane Wintz,Kathryn B Schaffer,Kelly Wright,Stacy L Nilsen
{"title":"EMPOWERING END-OF-LIFE CONVERSATIONS: The Role of Specialized Nursing Teams in Facilitating Code Status Changes at Discharge.","authors":"Diane Wintz,Kathryn B Schaffer,Kelly Wright,Stacy L Nilsen","doi":"10.1177/08258597241283303","DOIUrl":"https://doi.org/10.1177/08258597241283303","url":null,"abstract":"Objectives: Hospitalized patients may require goals of care (GOC) or Advance Health Care Planning (ACP), which can be time-consuming and emotionally tolling for providers. A nursing team specializing in code status (CODE), GOC, and ACP was developed to provide meaningful support for patients and families and decrease provider burden. Interest in CODE, GOC, ACP, and effectiveness of a nursing team to lead these conversations prompted this study. Methods: A collaborative nursing team was trained to address CODE, GOC, and ACP with patients demonstrating illness or geriatric syndrome. This team conducted 3 visits per patient on average during hospitalization using structured CODE templates to establish longer term goals and document what matters in the healthcare journey. Comprehensive narratives for ACP and GOC were included in charting, syncing the medical team, nursing, patient, and family. Consults were tracked over nine months with data reviewed retrospectively from medical charts. Descriptive analyses of cohort demographics, CODE and outcomes were completed. Results: The study group comprised 3342 patients between October 2022 and June 2023. Patients ranged in age from 18-106 years, with majority (88%) age 65 years and older. Mean length of stay (LOS) was 6.8 days with CODE documented for 91% upon admission. Of the 3166 older adults with known CODE on admission, 946 (30%) changed CODE by discharge, of which 95% were de-escalated. 83% of older patients arriving with limited CODE maintained limitations at discharge, with a small portion converting to comfort (16%). Conclusion: Employing a focused nursing team to conduct CODE, GOC, and ACP conversations may be an effective use of time and resources and result in de-escalation of resuscitation orders for patients demonstrating illness or geriatric syndrome.","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"27 1","pages":"8258597241283303"},"PeriodicalIF":1.7,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142262206","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}
{"title":"Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review.","authors":"Daniele Rusconi,Ilaria Basile,Flavia Rampichini,Stella Colombo,Laura Arba,Maria Luisa Pancheri,Letteria Consolo,Maura Lusignani","doi":"10.1177/08258597241274027","DOIUrl":"https://doi.org/10.1177/08258597241274027","url":null,"abstract":"Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. Methods: A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0-18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. Results: Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. Conclusion: e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care.","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"36 1","pages":"8258597241274027"},"PeriodicalIF":1.7,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142262208","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}
{"title":"Family Peace and Affecting Factors in Family Caregivers of Patients With Cancer: A Cross-Sectional Study.","authors":"Furkan Şahin,Fatma Sinem Şahin,Ayse Özkaraman","doi":"10.1177/08258597241282999","DOIUrl":"https://doi.org/10.1177/08258597241282999","url":null,"abstract":"Objective: During the care process, family members who provide care for a patient with cancer are confronted with changes in their family dynamics. The purpose of this study was to evaluate the family peace of caregivers of patient with cancer and the associated factors. Methods: A cross-sectional study was conducted in a single center. The sample of the study included caregivers who were family members of patients with cancer. Data were collected with Caregiver and Patient Information Forms, General Self-Efficacy Scale, Family Peace Scale, Self-Care Behaviors Scale, and MD Anderson Symptom Inventory. Results: It was found that the mean age of the caregivers was 50.20 ± 0.71 years, 64.1% were female, 78.7% were married. The mean score of the caregivers on the total family peace scale was above the average value with 46 ± 0.75 out of 75 points. The caregivers' level of family peace increases as their scores on the scale increase. The family peace of caregivers who were widowed or divorced, were self-employed, had less income than their expenses, had a chronic disease, reported that their health was affected, had low self-efficacy was worse than that of others. The family peace of caregivers of patients who had gynecological cancer and had a good income was better (P < 0.05). The self-efficacy level of the caregivers and the symptoms of the patient with cancer were significant predictors of family peace (P < 0.001). Conclusions: Family peace of caregivers was affected by the type of cancer, symptom burden, self-care behaviors of the patient, and caregivers' income status, chronic disease, marital status, and self-efficacy. Physicians and nurses, who are in close contact with caregivers of cancer patients, should be aware of the issue, professionals should assess the family environment of the caregivers of patient with cancer and counseling should be provided if deemed necessary.","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"18 1","pages":"8258597241282999"},"PeriodicalIF":1.7,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142262207","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}
{"title":"A General Overview of Palliative Care in Morocco: Needs Far Beyond Means","authors":"Meryem Hamdoune, Khaoula Jounaidi, Asmaa Ghafili, Abdellah Gantare","doi":"10.1177/08258597241278399","DOIUrl":"https://doi.org/10.1177/08258597241278399","url":null,"abstract":"Morocco's approach to developing palliative care is notably constrained, with an almost complete scarcity of laws and regulations in this area. Despite some progress, palliative care remains fragmented and underdeveloped, with persistent disparities in its accessibility and provision. Nationally, there is a lack of sufficient and detailed information about its progress. This paper aims to fill this gap by offering an overview of the history, infrastructure, education, and legislation framework surrounding palliative care in the country. Significant strides have been made since its implementation, but challenges persist, including the need for a comprehensive legislation framework, more trained professionals, and expanded services beyond oncology to other chronic diseases. Strengthening infrastructure and policies is essential to meet the growing needs of Morocco's population.","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"165 1","pages":"8258597241278399"},"PeriodicalIF":1.7,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142199238","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}
{"title":"The Lived Experiences of Hospice Healthcare Workers Caring for Adolescents and Young Adults With Advanced Cancer: An Interpretative Phenomenological Analysis.","authors":"Nadine Persaud, Sarah Brearley, Catherine Walshe","doi":"10.1177/08258597241277725","DOIUrl":"https://doi.org/10.1177/08258597241277725","url":null,"abstract":"<p><p><b>Objective:</b> To understand the lived experience of healthcare workers who provide palliative care to adolescents and young adults living with advanced cancer. <b>Methods:</b> Interpretative phenomenological analysis was the design of this study. Hospice healthcare workers from four pediatric hospices across Canada were recruited through purposive sampling. Semistructured in-person interviews were conducted. <b>Results:</b> Eighteen hospice healthcare workers participated. Two superordinate themes were identified. First, balancing on the tightrope of uncertainty wherein hospice healthcare workers strive to do their best while aiming to take the path of least regret. This theme was underscored by a notion of doing for the adolescents and young adults. Second, acting as a proxy revolves around the importance of fostering relationships with adolescents and young adults through honesty and transparency. The cycle of protection between adolescents and young adults, families, and healthcare providers was emphasized. <b>Conclusions:</b> An action-focused orientation when supporting adolescents and young adults was shared by the healthcare workers. The need to do for adolescents and young adults and the need to protect not only the people they care for but also themselves. More exploration is needed on how healthcare workers who care for adolescents and young adults can be supported while better understanding coping mechanisms.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597241277725"},"PeriodicalIF":1.3,"publicationDate":"2024-08-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142114476","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}
Tomas Escobar Gil, Mohammed A Quazi, Amir Humza Sohail, Muhammad Ali Butt, Aman Goyal, Sulaiman Sultan, Farooq Ali Sheikh, Muhammad Salman Khan, Abu Baker Sheikh
{"title":"The Intersectionality of Race and Gender in Palliative Care Services Utilization Among Critically-Ill Necrotizing Pancreatitis Patients: Analysis of a Large Nationwide Database in the United States.","authors":"Tomas Escobar Gil, Mohammed A Quazi, Amir Humza Sohail, Muhammad Ali Butt, Aman Goyal, Sulaiman Sultan, Farooq Ali Sheikh, Muhammad Salman Khan, Abu Baker Sheikh","doi":"10.1177/08258597241276318","DOIUrl":"10.1177/08258597241276318","url":null,"abstract":"<p><strong>Objective: </strong>Necrotizing pancreatitis (NP) is a severe form of pancreatitis that often necessitates intensive care and can result in significant morbidity and mortality. This study aimed to investigate racial and gender disparities in palliative care (PC) utilization among mechanically-ventilated patients with NP.</p><p><strong>Methods: </strong>In this retrospective analysis using the National Inpatient Sample from 2016 to 2020, we investigated 84 335 patients with NP requiring invasive mechanical ventilation, and the utilization of PC services and their disparities based on gender and race. To adjust for potential confounding factors, we employed multivariable logistic regression, ensuring that our findings account for various influencing variables and provide a robust analysis of the data.</p><p><strong>Results: </strong>Among the patients studied, 15.4% utilized PC consultations. Notably, female patients were 12% more likely to utilize PC than their male counterparts (OR 1.1, 95% CI: 1.003-1.2; <i>P</i> = .008). Racial disparities were pronounced: African Americans (OR 0.8, 95% CI 0.7-0.9, <i>P</i> < .001), Hispanic (OR 0.8, 95% CI 0.7-0.9, <i>P</i> = .001), and Asian or Pacific Islander patients (OR 0.74, 95% CI 0.57-0.97; <i>P</i> = .03) had significantly lower odds of utilizing PC compared to White patients. The cohort utilizing PC had a higher in-hospital mortality rate (74.7% vs 24.8%; OR 8.2, 95% CI 7.7-9.2) but a shorter mean hospital stays and lower associated costs.</p><p><strong>Conclusions: </strong>Our findings indicate significant racial and gender disparities in the utilization of PC for intubated patients with NP, with lower utilization among males and minority populations. These findings emphasize the urgent requirement for comprehensive changes in healthcare protocols.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597241276318"},"PeriodicalIF":1.3,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142082520","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}