Palliative Care and Social Practice最新文献

{"title":"'There is no such word as palliative care for us at the moment': A mixed-method study exploring the perceptions of healthcare professionals on the need for palliative care in Bhutan.","authors":"Tara Devi Laabar, Christobel Saunders, Kirsten Auret, Claire E Johnson","doi":"10.1177/26323524241272102","DOIUrl":"10.1177/26323524241272102","url":null,"abstract":"<p><strong>Background: </strong>The need for palliative care is ever-increasing globally. However, it is least developed or not available in most low-and-middle-income-countries including Bhutan.</p><p><strong>Objective: </strong>This study was aimed at exploring the perspectives of Bhutanese healthcare professionals on the need for palliative care in the country.</p><p><strong>Design: </strong>This is a cross-sectional, mixed-method study.</p><p><strong>Setting/subjects: </strong>The study sites included all levels of healthcare in Bhutan and involved doctors, nurses, physiotherapists, pharmacists, health assistants and <i>Drungtshos</i> (traditional physicians). Data were collected through surveys, focus group discussions and in-depth interviews.</p><p><strong>Results: </strong>While the majority of the participants were directly involved in taking care of terminally ill and dying patients, only 14% had received some form of palliative care training for a duration ranging from 1 day to 6 weeks. Ninety-five percent of the participants reported that they faced challenges related to lack of palliative care knowledge and skills; limited resources including analgesics; shortage of doctors and nurses and lack of a palliative care team; issues with low illiteracy and financial challenges among patients; and policies and other systemic issues. The qualitative data generated four major themes: past adverse experiences; unique and complex needs for palliative care; challenges faced while caring for terminally ill and dying patients; and the urgent need for palliative care in Bhutan.</p><p><strong>Conclusion: </strong>Bhutanese healthcare professionals had very limited exposure to palliative care. This study identified a crucial need for palliative care and informs the development of an appropriate palliative care model for Bhutan.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241272102"},"PeriodicalIF":2.7,"publicationDate":"2024-08-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11329896/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142000886","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":"Describing the characteristics and symptom profile of a group of urban patients experiencing socioeconomic inequity and receiving palliative care: a descriptive exploratory analysis.","authors":"Harrison Moore, Cara Bablitz, Anna Santos Salas, Heather Morris, Aynharan Sinnarajah, Sharon M Watanabe","doi":"10.1177/26323524241264880","DOIUrl":"10.1177/26323524241264880","url":null,"abstract":"<p><strong>Background: </strong>Individuals experiencing socioeconomic inequity have worse health outcomes and face barriers to palliative and end-of-life care. There is a need to develop palliative care programs tailored to this underserved population.</p><p><strong>Objectives: </strong>To understand the characteristics and symptom profiles of a group of urban patients experiencing socioeconomic inequity and receiving palliative care.</p><p><strong>Design: </strong>Descriptive exploratory analysis of a patient dataset. The patient dataset was generated through a pilot research study with patients experiencing socioeconomic inequity and life-limiting illness who received a community-based palliative care intervention.</p><p><strong>Methods: </strong>The intervention took place over 1 year in the Palliative Care Outreach and Advocacy Team, a community-based urban palliative care clinic in Edmonton, Alberta, Canada, serving persons experiencing socioeconomic inequity. Participants had to be at least 18 years of age, be able to communicate in English, require palliative care for a life-limiting illness, and be able to consent to inclusion in the study.</p><p><strong>Results: </strong>Twenty-five participants were enrolled. Participants predominantly identified as male and Indigenous, experienced poverty and housing instability, and had metastatic cancer. Our participants rated their pain, shortness of breath, and anxiety as more severe than the broader community-based palliative care population in the same city. Most patients died in inpatient hospices (73%).</p><p><strong>Conclusion: </strong>Our analysis provides an in-depth picture of an understudied, underserved population requiring palliative care. Given the higher symptom severity experienced by participants, our analysis highlights the importance of person-centered palliative care. We suggest that socioeconomic inequity should be considered in patients with life-limiting illnesses. Further research is needed to explore palliative care delivery to those facing socioeconomic inequity.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241264880"},"PeriodicalIF":2.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11295232/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890319","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":"Mid-Atlantic primary care providers' perception of barriers and facilitators to end-of-life conversation.","authors":"Melanie A Horning, Barbara Habermann","doi":"10.1177/26323524241264882","DOIUrl":"10.1177/26323524241264882","url":null,"abstract":"<p><strong>Background: </strong>Among the chronically ill, end-of-life conversations are often delayed until emergently necessary and the quality of those conversations and subsequent decision-making become compromised by critical illness, uncertainty, and anxiety. Many patients receive treatment that they would have declined if they had a better understanding of benefits and risks. Primary care providers are ideal people to facilitate end-of-life conversations, but these conversations rarely occur in the out-patient setting.</p><p><strong>Objective: </strong>To investigate the self-reported experiences of physicians and advanced practice nurses with conversational barriers and facilitators while leading end-of-life discussions in the primary care setting.</p><p><strong>Design: </strong>A qualitative descriptive study.</p><p><strong>Methods: </strong>Six physicians and eight advanced practice nurses participated in singular semi-structured interviews. Results were analyzed using a qualitative descriptive design and content analysis approach to coding.</p><p><strong>Results: </strong>Reported barriers in descending order included resistance from patients and families, insufficient time, and insufficient understanding of prognosis and associated expectations. Reported facilitators in descending order included established trusting relationship with provider, physical and/or cognitive decline and poor prognosis; and discussion standardization per Medicare guidelines.</p><p><strong>Conclusion: </strong>Recommendations for improving the end-of-life conversational process in the primary care setting include further research regarding end-of-life conversational facilitators within families, the improvement of patient/family education about hospice/palliative care resources and examining the feasibility of longer appointment allotment.¹.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241264882"},"PeriodicalIF":2.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11295217/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890320","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":"'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.","authors":"Vilma A Tripodoro, Verónica I Veloso, Eva Víbora Martín, Hana Kodba-Čeh, Miša Bakan, Birgit H Rasmussen, Sofía C Zambrano, Melanie Joshi, Svandis Íris Hálfdánardóttir, Guðlaug Helga Ásgeirsdóttir, Elisabeth Romarheim, Dagny Faksvåg Haugen, Tamsin McGlinchey, Berivan Yildiz, Pilar Barnestein-Fonseca, Anne Goossensen, Urška Lunder, Agnes van der Heide","doi":"10.1177/26323524241260425","DOIUrl":"10.1177/26323524241260425","url":null,"abstract":"<p><strong>Background: </strong>Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men.</p><p><strong>Objectives: </strong>This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view.</p><p><strong>Design: </strong>This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites.</p><p><strong>Methods: </strong>Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis.</p><p><strong>Results: </strong>We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care.</p><p><strong>Conclusion: </strong>Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241260425"},"PeriodicalIF":2.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11295216/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890321","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":"Meaning in life of terminally ill parents with minor children compared to palliative care patients - a quantitative analysis using SMiLE.","authors":"Henning Cuhls, Michaela Hesse, Gregory Heuser, Lukas Radbruch, Gülay Ateş","doi":"10.1177/26323524241264883","DOIUrl":"10.1177/26323524241264883","url":null,"abstract":"<p><strong>Background: </strong>Caring for terminally ill patients with minor children can be very stressful. The perceived quality of life is significantly influenced by the Meaning in Life (MiL). No studies were found that focus on the prioritized special needs of this patient group.</p><p><strong>Objectives: </strong>The aim is to compare and contrast terminally ill parents with minor children and palliative care patients in Germany, in order to provide appropriate support beyond medical, nursing or therapeutic interventions.</p><p><strong>Methods: </strong>Terminally ill parents diagnosed were surveyed using a validated instrument 'Schedule for Meaning in Life Evaluation (SMiLE)'. The study listed various areas that contribute to the MiL, followed by an evaluation of their importance and satisfaction levels. The researchers then compared these findings with data collected from palliative care patients.</p><p><strong>Results: </strong>In Germany, 54 patients, mostly female and with a mean age of 43, were included in this study between February 2017 and September 2020. The median age of the 96 children during the survey phase was 7 years. The comparison group consists of 100 palliative care patients in Germany; mostly aged 50 years and older. For terminally ill patients most important areas were in decreasing order family (100%), social relations (80%), leisure time (61%), nature/animals (39%) and home/garden (30%). Although the overall indices are close between both groups, there are significant and highly correlated differences between them. Parents felt limited by their illness in being a mother or father, as they wanted to be.</p><p><strong>Conclusion: </strong>The involvement with SMiLE led patients to consider their coping resources. The areas relevant to terminally ill parents differed from those relevant to palliative care patients. All participants identified family as the most important factor for MiL. The results suggest that evaluating MiL can serve as a coping strategy and help terminally ill parents with minor children.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241264883"},"PeriodicalIF":2.7,"publicationDate":"2024-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11289801/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141861091","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":"Novel drug treatments for pain in advanced cancer and serious illness: a focus on neuropathic pain and chemotherapy-induced peripheral neuropathy.","authors":"Mellar P Davis","doi":"10.1177/26323524241266603","DOIUrl":"10.1177/26323524241266603","url":null,"abstract":"<p><p>Drugs that are commercially available but have novel mechanisms of action should be explored as analgesics. This review will discuss haloperidol, miragabalin, palmitoylethanolamide (PEA), and clonidine as adjuvant analgesics or analgesics. Haloperidol is a sigma-1 receptor antagonist. Under stress and neuropathic injury, sigma-1 receptors act as a chaperone protein, which downmodulates opioid receptor activities and opens several ion channels. Clinically, there is only low-grade evidence that haloperidol improves pain when combined with morphine, methadone, or tramadol in patients who have cancer, pain from fibrosis, radiation necrosis, or neuropathic pain. Miragabalin is a gabapentinoid approved for the treatment of neuropathic pain in Japan since 2019. In randomized trials, patients with diabetic neuropathy have responded to miragabalin. Its long binding half-life on the calcium channel subunit may provide an advantage over other gabapentinoids. PEA belongs to a group of endogenous bioactive lipids called ALIAmides (autocoid local injury antagonist amides), which have a sense role in modulating numerous biological processes in particular non-neuronal neuroinflammatory responses to neuropathic injury and systemic inflammation. Multiple randomized trials and meta-analyses have demonstrated PEA's effectiveness in reducing pain severity arising from diverse pain phenotypes. Clonidine is an alpha2 adrenoceptor agonist and an imidazoline2 receptor agonist, which is U.S. Federal Drug Administration approved for attention deficit hyperactivity disorder in children, Tourette's syndrome, adjunctive therapy for cancer-related pain, and hypertension. Clonidine activation at alpha2 adrenoceptors causes downstream activation of inhibitory G-proteins (Gi/Go), which inhibits cyclic Adenosine monophosphate (AMP) production and hyperpolarizes neuron membranes, thus reducing allodynia. Intravenous clonidine has been used in terminally ill patients with poorly controlled symptoms, in particular pain and agitation.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241266603"},"PeriodicalIF":2.7,"publicationDate":"2024-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11289827/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141861092","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 growth of social work in palliative and end-of-life care in the United States: how did we get here?","authors":"Ellen L Csikai, Karen Bullock","doi":"10.1177/26323524241263625","DOIUrl":"10.1177/26323524241263625","url":null,"abstract":"<p><p>A historical look back at the 'beginnings' of palliative social work in the United States provides a lens through which to view current areas of focus and future trends in hospice and palliative care with the objective of emphasizing the need for equitable practice approaches. The background and formative efforts to establish palliative social work in the United States as a specialty field of practice were scaffolded by the Project on Death in America, Open Society Institute's Social Work Leadership Development Award Program, and two Social Work Leadership Summits on End-of-Life and Palliative Care, which help to explain how we got here. In the development of the social work role in providing palliative and end-of-life care for individuals who are seriously ill and their families, several important functions unfolded naturally as part of our practice repertoire as professionals. Practitioners, researchers, advocates, policy developers, and more have advanced the field and strengthened palliative social work, especially as the profession addresses inequities and promotes quality of life. Social workers' administrative reports, academic literature, professional standards and educational programs, assessment tools, and evidence-informed practice interventions contribute to illuminating the roles that social workers have on interdisciplinary palliative care teams, while emphasizing the importance of leadership development. Social workers in palliative and end-of-life care are on a firm ground from which to move forward into the ever-evolving future of providing essential quality care at such a critical time in life.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241263625"},"PeriodicalIF":2.7,"publicationDate":"2024-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11282547/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141789293","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":"Effective symptom relief through continuous integration of palliative care in advanced renal cell carcinoma patients: comprehensive measurement using the palliative care base assessment.","authors":"Anne Dörr, Insa Vogel, Friedrich Wittenbecher, Jörg Westermann, Peter Thuss-Patience, Johann Ahn, Uwe Pelzer, Juliane Hardt, Lars Bullinger, Anne Flörcken","doi":"10.1177/26323524241260424","DOIUrl":"10.1177/26323524241260424","url":null,"abstract":"<p><strong>Background: </strong>Due to modern therapies, survival in metastatic renal cell carcinoma (mRCC) has been significantly prolonged. Nevertheless, patients suffering from advanced disease often present with severe symptoms. Early integration of palliative care into anti-cancer treatment has been shown to improve quality of life and may even prolong survival. Therefore, it is recommended to offer palliative care to patients with complex symptoms at the beginning of an advanced disease stage. To our knowledge, so far, no study has been conducted to examine the role of palliative care in patients with mRCC.</p><p><strong>Objectives: </strong>This study aimed to assess the symptom burden and quality of life before and after an inpatient palliative care treatment.</p><p><strong>Design: </strong>The study design is a retrospective observational study.</p><p><strong>Methods: </strong>We included patients with mRCC, who were admitted to our palliative care unit between 2011 and 2017 due to severe symptoms. The symptom burden was assessed at admission, throughout treatment, and at discharge. The evaluation consisted of the palliative care base assessment and daily documentation of relevant symptoms.</p><p><strong>Results: </strong>We evaluated 110 hospitalizations of 58 RCC patients. On average, patients were admitted to the palliative care unit 7 years after initial diagnosis (range 1-305 months). The median age was 70.5 years, 69% of the patients were male, 3% female. The main causes for admission were pain (52%) and dyspnea (26%), and the most frequent patient-reported symptoms were fatigue/exhaustion (87%), weakness (83%), and need for assistance with activities of daily living (83%). Multidisciplinary palliative care treatment led to a significant reduction in the median minimal documentation system (MIDOS) symptom score (15.6-9.9, <i>p</i> < 0.001), the median numeric pain rating scale (3-0, <i>p</i> < 0.001), and a significant reduction in mean ratings of the distress thermometer (5.5-3.1, <i>p</i> = 0.016).</p><p><strong>Conclusion: </strong>Our analysis shows that the integration of palliative care treatment is effective throughout the disease in mRCC and could measurably reduce the symptom burden in our patient population. Palliative care should not be equated with end-of-life care but should rather be integrated throughout advanced disease, particularly as soon as a cure is impossible.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241260424"},"PeriodicalIF":2.7,"publicationDate":"2024-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11265252/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141753030","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":"Exploring the 'citizen organization': an evaluation of a regional Australian community-based palliative care service model.","authors":"John Rosenberg, Trudi Flynn, Katharina Merollini, Josie Linn, Doreen Nabukalu, Cindy Davis","doi":"10.1177/26323524241260427","DOIUrl":"10.1177/26323524241260427","url":null,"abstract":"<p><strong>Background: </strong>Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. Its goals are to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services and is grounded in equal partnerships between civic life, community members, patients and carers, and service providers. This takes many forms, including what we have termed the 'citizen organization'.</p><p><strong>Objectives: </strong>This paper reports on an evaluation of Little Haven's model of care and explores the organization's place as a 'citizen' of the community it services.</p><p><strong>Design: </strong>A co-designed evaluation approach utilizing mixed-method design is used.</p><p><strong>Methods: </strong>Multiple data sources obtained a broad perspective of the model of care including primary qualitative data from current patients, current carers, staff, volunteers and organizational stakeholders (interviews and focus groups); and secondary quantitative survey data from bereaved carers. Thematic analysis and descriptive statistics were generated.</p><p><strong>Results: </strong>This model of care demonstrates common service elements including early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users, with strong community engagement. These elements enable high-quality care for patients and carers who describe the support as 'over and above', enabling good quality of life and care at home. Staff and volunteers perceive the built-in flexibility of the model as critical to its outcomes; the interface between the service and the community is similarly stressed as a key service element. Organizational stakeholders observed the model as a product of local activism and accountability to the community.</p><p><strong>Conclusion: </strong>All participant groups agree the service model enables the delivery of excellent care. The construction of a community palliative care service as a citizen organization emerged as a new concept.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241260427"},"PeriodicalIF":2.7,"publicationDate":"2024-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11265238/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141753031","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":"Providing clarity: communicating the benefits of palliative care beyond end-of-life support.","authors":"Julie L Masters, Patrick W Josh, Amanda J Kirkpatrick, Mariya A Kovaleva, Harlan R Sayles","doi":"10.1177/26323524241263109","DOIUrl":"10.1177/26323524241263109","url":null,"abstract":"<p><strong>Background: </strong>Palliative care affords numerous benefits, including improvements in symptom management, mental health, and quality of life, financial savings, and decreased mortality. Yet palliative care is poorly understood and often erroneously viewed as end-of-life care and hospice. Barriers for better education of the public about palliative care and its benefits include shortage of healthcare providers specializing in palliative care and generalist clinicians' lack of knowledge and confidence to discuss this topic and time constraints in busy clinical settings.</p><p><strong>Objectives: </strong>Explore and compare the knowledge, values, and practices of community-dwelling adults 19 years and older from Nebraska about serious illness and end-of-life healthcare options.</p><p><strong>Design: </strong>Secondary analysis of cross-sectional data collected in 2022 of 635 adults. We examined the fifth wave (2022) of a multiyear survey focusing on exploring Nebraskans' understanding of and preferences related to end-of-life care planning.</p><p><strong>Methods: </strong>Descriptive statistics and chi-square tests to compare results between groups. Univariable and multivariable logistic regression analyses examine associations of variables as to knowledge of hospice and palliative care.</p><p><strong>Results: </strong>While 50% of respondents had heard a little or a lot about palliative care, 64% either did not know or were not sure of the difference between palliative care and hospice. Those who reported being in poor health were not more likely to know the difference between palliative care and hospice compared to those reporting being in fair, good, or excellent health.</p><p><strong>Conclusion: </strong>This study offers insight into the knowledge and attitudes about palliative care among community-dwelling adults, 19 years and older living in Nebraska. More effort is needed to communicate what palliative care is, who can receive help from it, and why it is not only for people at end of life. Advance care planning discussions can be useful in offering clarity.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241263109"},"PeriodicalIF":2.7,"publicationDate":"2024-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11265247/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141753032","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}