PROGRESS IN PALLIATIVE CARE最新文献

{"title":"Evaluating end-of-life chemotherapy for solid tumor and hematologic malignancy patients","authors":"L. Baum, Rachel Rosenblum, B. Scarborough, Cardinale B. Smith","doi":"10.1080/09699260.2021.1872138","DOIUrl":"https://doi.org/10.1080/09699260.2021.1872138","url":null,"abstract":"Despite guidelines, chemotherapy near end-of-life (EOL) remains common, particularly in hematologic malignancy (HM). Determinants of EOL chemotherapy for hospitalized cancer patients are not well elucidated. We performed a retrospective cross-sectional descriptive study of patients who died inpatient within two weeks of chemotherapy in 2012 and 2014. By chart review, we identified patient characteristics, estimated performance status, categorized cause of death, and abstracted clinical intent. We identified 102 patients; 65% with HM and 35% with SM. Amongst these patients, rates of ‘Do Not Resuscitate’ status at time of death (P=0.36) were similar; patients with SM were more likely to receive a palliative care consultation (OR=7.6; 95%CI: 2.4–24.3) and less likely to die in intensive care (ICU) (OR=0.17; 95%CI=0.04–0.6). Progression of disease was the most common cause of death in both groups; patients with SM had lower likelihood of dying from a treatment-related cause (OR=0.06; 95%CI=0.01–0.32). Chemotherapy was administered closer to death in HM, 5.6 ± 4.2 days, compared to SM, 8.0 ± 3.7 days (IRR=2.18; 95%CI=0.58–3.78). For patients with HM, documented clinical reasoning emphasized curative intent. The dichotomization of palliative and oncologic care may contribute to worse EOL outcomes, particularly for patients receiving curative intent therapies.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"337 - 341"},"PeriodicalIF":1.7,"publicationDate":"2021-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1872138","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47544121","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Impact of a pediatric palliative care team on resident education in end of life care","authors":"Brian W. Pennarola, R. MacDonell-Yilmaz, P. Sprinz, T. Renaud","doi":"10.1080/09699260.2021.1871578","DOIUrl":"https://doi.org/10.1080/09699260.2021.1871578","url":null,"abstract":"Introduction The presence of Pediatric Palliative Care (PPC) teams and PPC curricula at teaching hospitals are shown to increase resident physician education in pain and symptom management. However, their impact on residents’ comfort in caring for children at the end of life (EOL) is not well studied. We sought to examine whether differences exist in reported levels of experience and education with palliative andEOL care among physicians completing residency before versus after the development of a PPC team. Methods We surveyed 329 pediatrics residents and graduates from our medium-sized children’s hospital about their experiences and education in providing palliative or EOL care to pediatric patients. We compared responses from residents who completed training prior to the development of a PPC team to those who completed training after its implementation. Results 149 individuals (45%) responded. Participants who completed residency during or after the implementation of the PPC team were more likely to agree that they received education about EOL symptom management (K2 = 11.58, P < 0.001) and felt comfortable caring for patients at EOL (K 2 = 5.62, P = 0.02). Discussion Our findings suggest a beneficial impact of PPC team presence on pediatrics resident education. When appropriate, involving of pediatrics residents in the care of children approaching EOL should be supported and encouraged.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"217 - 222"},"PeriodicalIF":1.7,"publicationDate":"2021-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1871578","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47191871","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Candidates and candidacy: Patient, carer and staff perceptions of referral to a specialist palliative day unit","authors":"F. Wilson, C. Gardiner","doi":"10.1080/09699260.2021.1872150","DOIUrl":"https://doi.org/10.1080/09699260.2021.1872150","url":null,"abstract":"Background Specialist palliative day care can support palliative caregiving for those living in the community with advanced disease. However, how people access specialist palliative day care and why is unclear. This study therefore aims to explore the referral experiences of patients, carers and staff in the context of a specialist palliative day care unit. Design Qualitative study using constant comparative analysis to explore referral experiences to a UK specialist palliative day unit through one-to-one interviews with patients (n=15), family carers (n=6) and staff (n=10) including nurses, medics and managers and focus groups with (n=3 and n=7) specialist palliative care nurses. Findings The three datasets (staff, patients and carers) provide a triangulation of perspectives captured within the core category of ‘managing referral’ and presented as six sub-themes. Staff described referral as an intuitive interaction involving ‘looking for openings’ and ‘getting people through the door’. Patients familiar with the service were persistent in ‘shouting for help’ but most regarded referral with dread, only ‘giving it a go’ following crisis. For family carers referral presented ‘time out/respite’ but also the ‘end-of-the-line’. Conclusions Unclear understandings of services as well as uncertain professional, patient and carers notions of candidacy influence referral to specialist palliative day care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"278 - 284"},"PeriodicalIF":1.7,"publicationDate":"2021-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1872150","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47197252","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Maintaining control: A qualitative study of being a patient in need of specialized palliative care during the COVID-19 pandemic","authors":"H. Konradsen, Trine Solander True, H. Vedsegaard, G. Wind, Kristoffer Marsaa","doi":"10.1080/09699260.2021.1872139","DOIUrl":"https://doi.org/10.1080/09699260.2021.1872139","url":null,"abstract":"Abstract Being a patient in need of specialized palliative during the COVID-19 pandemic is challenging. Governments around the world have reduced the available health care services as well as restricted in-person meetings between patients, health care professionals, and relatives. The aim of this study was to explore the experiences of patients with specialized palliative care needs during the period of restrictions requiring social distancing due to the COVID-19 pandemic. The analysis of this qualitative study was guided by a grounded theory approach. The participants were patients living in their own homes who were being treated by the outpatient clinic palliative care unit at the Herlev and Gentofte University Hospital in Denmark. Participants’ main concern was maintaining control during the pandemic. They achieved this by aiming to secure a meaningful life by remaining occupied during the day, balancing social contact, contemplating the reopening of society, and seeking help from health care professionals. Participants were concerned about losing control and this concern increased with the reopening of society. Health care professionals must ensure that they provide support and care for patients with specialized palliative care needs when societal restrictions change.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"186 - 190"},"PeriodicalIF":1.7,"publicationDate":"2021-01-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1872139","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48540315","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Bibliography","authors":"","doi":"10.1080/09699260.2021.1867907","DOIUrl":"https://doi.org/10.1080/09699260.2021.1867907","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"26 - 56"},"PeriodicalIF":1.7,"publicationDate":"2021-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1867907","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46534584","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reflecting on suffering at the end-of-life","authors":"M. O’Connor","doi":"10.1080/09699260.2021.1852470","DOIUrl":"https://doi.org/10.1080/09699260.2021.1852470","url":null,"abstract":"I was privileged to be awarded a Winston Churchill Fellowship in 2019, which enabled travel to a number of countries where active assistance in dying is legally available. This opportunity afforded...","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"1 - 4"},"PeriodicalIF":1.7,"publicationDate":"2021-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1852470","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42447977","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Quality of Life and Quality of Care in patients with advanced Chronic Heart Failure (CHF) and advanced Chronic Obstructive Pulmonary Disease (COPD): Implication for Palliative Care from a prospective observational study","authors":"N. Siouta, A. Heylen, B. Aertgeerts, P. Clement, W. Janssens, J. Van Cleemput, J. Menten","doi":"10.1080/09699260.2020.1831248","DOIUrl":"https://doi.org/10.1080/09699260.2020.1831248","url":null,"abstract":"Background: Patients with advanced CHF/COPD and their caregivers share many misconceptions about the life-limiting nature of their disease and when compared to cancer patients, CHF/COPD patients are less likely to receive Palliative Care. Aim: This observational prospective study explores (i) the quality of life (QoL) and symptom control and (ii) the quality of care in CHF/COPD patients in an acute hospital setting. Methods: Eligible patients and their informal caregivers filled in (i) the POS questionnaire that assesses the QoL and the symptom control and (ii) the CanHelp Lite questionnaire that assesses quality of care. These questionnaires were completed at inclusion and after a three-month-follow-up. Results: The majority of the participants were 60-79 years old with mild to moderate symptomatology. Older patients or patients with heavy symptoms declined participation. Both patients and caregivers share common and overall positive beliefs concerning patients' QoL and quality of care. Conclusions: The severity of the healthcare condition of the included patients appears to at odds with their positive evaluation of QoL and quality of care. Possible factors contributing to this finding might be the reluctance of physicians to engage to uncomfortable conversations, the patients' denial of “bad-news” and the overall taboo of communication about death.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"11 - 19"},"PeriodicalIF":1.7,"publicationDate":"2021-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2020.1831248","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46793619","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study.","authors":"Eunji Cho,&nbsp;Mary Jo Gilmer,&nbsp;Debra L Friedman,&nbsp;Verna L Hendricks-Ferguson,&nbsp;Pamela S Hinds,&nbsp;Terrah Foster Akard","doi":"10.1080/09699260.2021.1898077","DOIUrl":"https://doi.org/10.1080/09699260.2021.1898077","url":null,"abstract":"<p><p>Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (<i>N=</i> 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.</p>","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 5","pages":"264-271"},"PeriodicalIF":1.7,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1898077","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39844832","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Improved Parent-Child Communication following a RCT Evaluating a Legacy Intervention for Children with Advanced Cancer.","authors":"Terrah Foster Akard,&nbsp;Mary S Dietrich,&nbsp;Debra L Friedman,&nbsp;Cynthia A Gerhardt,&nbsp;Barbara Given,&nbsp;Verna Hendricks-Ferguson,&nbsp;Pamela S Hinds,&nbsp;Sheila H Ridner,&nbsp;Nicole Beckmann,&nbsp;Mary Jo Gilmer","doi":"10.1080/09699260.2020.1826778","DOIUrl":"https://doi.org/10.1080/09699260.2020.1826778","url":null,"abstract":"<p><p>Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We examined the impact of a web-based legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication.Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's <i>d</i>. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's <i>d</i> = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Future studies should include fathers and measure expression of feelings and parent-child interaction. Providers should continue to facilitate family communication for children with advanced disease and realize that legacy interventions may impact mother-child versus father-child communication differently.</p>","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 3","pages":"130-139"},"PeriodicalIF":1.7,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2020.1826778","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39166033","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The challenges of establishing a palliative care collaboration with the intensive care unit: How we did it? A prospective observational study","authors":"C. Poi, M. Koh, Wendy Ong, Y. Wong, Fionna Chunru Yow, H. Tan","doi":"10.1080/09699260.2020.1852655","DOIUrl":"https://doi.org/10.1080/09699260.2020.1852655","url":null,"abstract":"Abstract Background Palliative care should be an integral component of comprehensive ICU care for all critically ill patients. Objectives We aimed to study and describe the impact of an ICU-Palliative Care Collaboration using a ICU screening criteria and its influence on referral rates and outcomes. Methods This was a prospective, observational study that included all critically ill patients who were referred to our ICU-Palliative Care Service over a 3-year period from January 2016 to December 2018 in a 1500-bed teaching hospital. Critically ill patients who met the referral criteria would be referred to our ICU-Palliative Care Service. Results A total of 662 critically ill patients were referred during the study period. 398(60.1%) patients had withdrawal of ventilator.595(89.9%) of 662 patients referred to palliative care died. 284(42.9%) patients died in the ICU. The palliative care team continued to care for the remaining 378 patients who were transferred out of the ICU to the general ward. Conclusions Our ICU-Palliative Care service provided care for critically ill patients with palliative care needs in a seamless and holistic manner in both the ICU and post-ICU settings. The establishment of a screening criteria allowed patients with potentially unmet palliative care needs to be identified and referred to palliative care. Active screening and collaborative efforts between the ICU and palliative care team resulted a significant increment in referral rates.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"342 - 351"},"PeriodicalIF":1.7,"publicationDate":"2020-12-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2020.1852655","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41528099","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}