The American journal of hospice & palliative care最新文献

{"title":"Symptoms and Prognoses of Patients With Breast Cancer and Malignant Wounds in Palliative Care Units: The Multicenter, Prospective, Observational EASED Study.","authors":"Yuma Takeda, Hiroto Ishiki, Shunsuke Oyamada, Hiroyuki Otani, Isseki Maeda, Takashi Yamaguchi, Jun Hamano, Masanori Mori, Tatsuya Morita","doi":"10.1177/10499091231219855","DOIUrl":"10.1177/10499091231219855","url":null,"abstract":"<p><strong>Background: </strong>This study sought to investigate the symptoms and prognoses of patients with breast cancer and malignant wounds in the palliative care unit setting.</p><p><strong>Methods: </strong>This study was a sub-group analysis of a multicenter, prospective, observational study. Patients admitted to 23 palliative care units in Japan between January and December 2017 were enrolled. Data of patients with breast cancer were extracted. We compared demographic characteristics, symptoms, and prognoses by breast cancer malignant wound status. The primary outcome was overall survival. Secondary outcomes included Palliative Prognostic Index (PPI) score, malignant wound characteristics, and symptom burden.</p><p><strong>Results: </strong>Of 1896 patients, 131 (6.9%) had breast cancer. In this cohort, 44 (33.6%) patients had malignant wounds. Most malignant wounds (88%) were on the back and chest. Malignant wounds were associated with skin redness, erosion, necrosis, or fistula. Symptoms included bleeding, exudate, odor, and pain. Twenty-eight patients (63.6%) needed dressing changes and 14 (31.8%) patients experienced bleeding. None died due to bleeding. In the malignant wounds group, 32 (72.8%) patients had used an opioid dose equivalent to 38 mg of oral morphine daily, compared to 25 mg by 57 (65.5%) patients in the non-malignant wounds group (<i>P</i> = .26). Median PPI scores at hospital admission were 4.5 vs 6.5 (<i>P</i> = .08). Median survival was 23 vs 21 days (<i>P</i> = .48).</p><p><strong>Conclusions: </strong>Patients with malignant wounds had a distinct symptom burden profile and tended to use a higher dose of opioids. The effect of malignant wounds on survival was unclear.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1373-1379"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138500624","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":"Cultural Advocacy for Indigenous Individuals With Serious Illness.","authors":"Jeanna A Ford, Constance Dahlin","doi":"10.1177/10499091231224794","DOIUrl":"10.1177/10499091231224794","url":null,"abstract":"<p><p>Indigenous American (I.A.) individuals with serious illness and their families have unmet needs. Often, this group is viewed as a minority within a minority. Numerous health challenges exist within the I.A. populations resulting in dire health care situations. Historical trauma and mistrust of the healthcare system impacts access to quality palliative care by this marginalized population. Given the range of social, spiritual, and cultural issues, the interprofessional team needs increased knowledge specific to the I.A. population to ensure holistic, culturally sensitive care. Utilizing a case study, this article reviews of the needs of I.A. individuals with serious illness and essential skills. The aim is empower palliative care clinicians the knowledge to provide culturally sensitive and congruent care to I.A. individuals with serious illness and their community.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1482-1490"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139673966","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":"Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.","authors":"Sandhya Seshadri, Angela Contento, Kei Sugiura, Maryann Abendroth, Zachary Macchi, Benzi M Kluger","doi":"10.1177/10499091231223739","DOIUrl":"10.1177/10499091231223739","url":null,"abstract":"<p><strong>Background: </strong>Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving.</p><p><strong>Aim: </strong>To understand family members' perception of their role, and of the challenges and rewards of PD caregiving.</p><p><strong>Method: </strong>Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners <i>(n = 16)</i>. Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes.</p><p><strong>Results: </strong>We identified 5 themes: <i>(a) Unpredictability is the hardest part of caregiving.</i> It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; <i>(b) Disease progression and multiple symptoms contribute to carepartners' emotional distress</i>. Carepartners felt unprepared and were saddened by the patient's and their own losses; <i>(c) Caring for a family member is not a \"burden.\"</i> Though stressful, carepartners resisted associating caregiving with the term \"burden\"; <i>(d) Caregiving is a partnership.</i> Carepartners saw their role as being less of \"givers\" and more of partners in disease management<i>;</i> and <i>(e) Caregiving is an opportunity for personal satisfaction, joy, and growth.</i> Caregiving was seen as a \"gift\" that enabled carepartners to express love and experience personal growth.</p><p><strong>Conclusions: </strong>Despite challenges PD carepartners view their role as \"partners\" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1442-1450"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11687559/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139543893","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 Perspective of Cancer Patients in Palliative Care on Unmet Needs: A Qualitative Synthesis Using Meta-Ethnography.","authors":"Ilaria Basile, Letteria Consolo, Daniele Rusconi, Laura Arba, Flavia Rampichini, Augusto Caraceni, Maura Lusignani","doi":"10.1177/10499091231226429","DOIUrl":"10.1177/10499091231226429","url":null,"abstract":"<p><strong>Background: </strong>As cancer patients approach the end of life, their needs become more complex, increasing the demand for palliative care. Advanced-stage cancer patients encounter increasing unmet psychological, physical, autonomy, and communication needs, reflecting the difference between patients' perceived requirements and the support from health care professionals. The objective of this study was to synthesize qualitative evidence on unmet needs in palliative cancer care among inpatient and outpatient adults.</p><p><strong>Methods: </strong>We conducted a meta-ethnographic review according to Noblit and Hare's framework and the operationalized guidelines developed by Sattar. The eMERGe Reporting Guidance was followed. A literature search was conducted in Cinahl, Embase, Medline, Scopus, Web of Science, PsycINFO and Google Scholar for gray literature. For all the studies, direct quotes from the participants and authors' results were identified, coded and analyzed in NVivo 1.7.1 and extracted as I and II order constructs from which higher third-order themes originated.</p><p><strong>Results: </strong>Eight studies were included. Four new themes emerged, representing areas where palliative cancer care patients expressed a need for help: <i>the need for comprehensive, patient-centered care, the need for maintaining a sense of autonomy and dignity, the need for attentive support to patients' soul and the need for accessible and timely care.</i></p><p><strong>Conclusions: </strong>Palliative care patients require a secure, suffering-free end-of-life journey with informed decision-making and team support. Ensuring continuity of care, validating their suffering, and allocating sufficient time are crucial aspects of care. This involves maintaining a consistent care plan, respecting patients' emotions and experiences, and providing services tailored to individual needs.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1491-1505"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11430178/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139099443","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":"Pediatric Oncology Hospice: A Comprehensive Review.","authors":"Ali Tafazoli, Katharine Cronin-Wood","doi":"10.1177/10499091241227609","DOIUrl":"10.1177/10499091241227609","url":null,"abstract":"<p><p>Pediatric hospice is a new terminology in current medical literature. Implementation of pediatric hospice care in oncology setting is a vast but subspecialized field of research and practice. However, it is accompanied by substantial uncertainties, shortages and unexplored sections. The lack of globally established definitions, principles, and guidelines in this field has adversely impacted the quality of end-of-life experiences for children with hospice needs worldwide. To address this gap, we conducted a comprehensive review of scientific literature, extracting and compiling the available but sparse data on pediatric oncology hospice from the PubMed database. Our systematic approach led to development of a well-organized structure introducing the foundational elements, highlighting complications, and uncovering hidden gaps in this critical area. This structured framework comprises nine major categories including general ideology, population specifications, role of parents and family, psychosocial issues, financial complications, service locations, involved specialties, regulations, and quality improvement. This platform can serve as a valuable resource in establishing a scientifically reliable foundation for future experiments and practices in pediatric oncology hospice.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1467-1481"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11425979/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139473136","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":"Compassionate Presence in Seriously Ill Cancer Patients.","authors":"M Renz, C Gloggner, D Bueche, U Renz","doi":"10.1177/10499091241226629","DOIUrl":"10.1177/10499091241226629","url":null,"abstract":"<p><p><i>Background</i>: Compassion is a relational response to patients' suffering. Palliative care focuses not only on skills but also on compassion. Nevertheless, incorporated patient perspectives are largely missing from existing research. <i>Aim</i>: Our mixed-method exploratory study in a major Swiss cancer center sought to better understand compassionate presence, its benefits and challenges for patients and providers (ie, close relatives, close friends, and professionals-all referred to here as providers). It also investigated providers' motivation. <i>Method</i>: Twelve multidisciplinary, specially trained professionals interviewed 50 patients who had received compassionate presence. All patients had advanced cancer with risk of death. Providers were also interviewed. Data on the positive and burdensome effects of compassionate presence on patients and providers were gathered using a specific protocol. This also served to record patients' characteristics and providers' motivations to give compassion and whether providers felt sustained (eg, by nature). <i>Results</i>: The study suggests a high impact of compassionate presence with benefits on patients (50/50) and on providers (49/50). Enhanced connectedness was evident not only in the patient-provider relationship (38/50) but also, for instance, in an increased ability to love (8/50) or in an intensified solidarity (29/50). A considerable number of patients and providers experienced mental-spiritual change but also burdensome effects (eg, ambivalences). Providers showed a range of motivations. <i>Conclusion</i>: Compassion is not only necessary in existential crises and near death, but also happens and takes considerable effects precisely in such situations.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1408-1422"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139503312","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":"Oncology and Palliative Care Integration Model: A Cost Analysis Study in a Brazilian Hospital Setting.","authors":"Tânia V V Guimarães, Alessandro G Campolina, Luciana M Rozman, Toshio Chiba, Patrícia C de Soárez, Maria D P Estevez Diz","doi":"10.1177/10499091241232401","DOIUrl":"10.1177/10499091241232401","url":null,"abstract":"<p><p><b>Background:</b> In 2019, the São Paulo State Cancer Institute (ICESP) implemented a novel model integrating Oncology with Palliative Care specialists. We evaluated the impact of this model on healthcare resource utilization and costs. <b>Methods:</b> We analyzed data from all patients who passed away in February (1 month prior to implementation) and November (8 months after model implementation group) at ICESP, Brazil. Healthcare utilization data, including emergency department visits, hospital and intensive care unit admissions, chemotherapy, and radiotherapy use, were retrieved from Electronic Medical Records. Unit cost values were obtained from the administrative database. <b>Results:</b> A total of 198 patients who died in February and 196 in November were included in the analysis. Groups exhibited similarities in sex, age, ECOG, cancer type, previous outpatient palliative care consultations, and place of death (ward: 56.6% pre-intervention, 50% post-intervention). The mean cost per patient was US$13,226.29 pre-intervention and US$11,445.82 post-intervention (<i>P</i> = .007). Statistically significant differences were noted in days hospitalized in the surgical ward (227 vs 115), emergency department visits (233 vs 45), chemotherapy sessions (140 vs 26), and radiotherapy sessions (146 vs 10). Excluding outpatient treatments, the total costs for chemotherapy and radiotherapy in the last 30 days of life were US$16,924.45 pre-intervention and US$7851.65 post-intervention. Reductions were more pronounced in patients with ECOG 3-4 (<i>P</i> = .039). <b>Conclusion:</b> Our data suggests that the integration model was associated with a reduction in potentially inappropriate treatments during the last month of life, leading to decreased healthcare utilization and costs.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1451-1458"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139914375","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":"Is This a Deceased Loved One That I See Before Me or Am I Only Dreaming?","authors":"Stephen Claxton-Oldfield","doi":"10.1177/10499091241237257","DOIUrl":"10.1177/10499091241237257","url":null,"abstract":"<p><p>This article makes a case for examining dying person's visions during wakefulness and their dreams during sleep as separate and unique phenomena. The reason being that the mode of experience, for example, being visited by a deceased loved one while awake and conscious vs having a deceased loved one appear in a dream while asleep, may have a different impact on the dying person. A better understanding of the content and impact of waking visions and sleeping dreams, respectively, may be beneficial to both dying persons and their families.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1506-1510"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140041251","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":"Promising Impact of Telenovela Intervention for Caregivers of Hospice Patients: A Pilot Study.","authors":"Dulce M Cruz-Oliver, Gabrielle E Milner, Kelsea Mensh, Marielle Bugayong, Marcela D Blinka, Nowella Durkin, Martha Abshire Saylor, Chakra Budhathoki, Debra Parker Oliver","doi":"10.1177/10499091241228835","DOIUrl":"10.1177/10499091241228835","url":null,"abstract":"<p><strong>Background: </strong>Hospice family caregivers (HFCGs) support the needs of their loved ones but are at risk of developing distress and anxiety. NOVELA is a four-chapter telenovela-style educational video to support topics related to hospice caregiving. Telehealth visits are scheduled in 4 weekly sessions consisting of a chapter and subsequent discussion with an interventionist. This feasibility pilot study tested NOVELA's effect to change HFCGs' outcomes, session and outcome measure completion (defined a priori as >70%).</p><p><strong>Methods: </strong>This is a single-group pretest-posttest study of HFCGs of care recipients with PPS score >20% from 3 hospices in the U.S. Mid-Atlantic region. At baseline and at final posttest, participants completed a web-based survey assessing 3 outcomes: anxiety, self-efficacy, and satisfaction with intervention. Descriptive, t-test, and chi-square statistics were computed.</p><p><strong>Results: </strong>Participants in our study (N = 59) were mainly collage educated, White, female, adult children of home-bound people with a non-cancer diagnosis. Outcomes changed in the expected direction (<i>P</i> > .05) with higher self-efficacy (Cohen's d = -.08 [95% CI -.4 to .2) and lower anxiety (Cohen's d = .2 [95% CI -.1 to .5]) scores from final to baseline, 86% of HFCGs were satisfied or very satisfied with NOVELA, session (33/59) and outcome measure (43/59) completion averaged 68%.</p><p><strong>Conclusion: </strong>Encouraging trends in NOVELA's estimation of effect suggests that NOVELA may buffer stressful aspects of hospice caregiving. However, further refinement of NOVELA is needed. Supporting HFCGs through supportive educational interventions may reduce distress and anxiety with broad implications for quality improvement.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1400-1407"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139699199","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":"The Development and Clinical Impact of an Innovative Palliative Care Lever Tool for Individuals With Idiopathic Pulmonary Fibrosis: A Quality Improvement Project.","authors":"Kathryn Fenwick, Maryl Kreider, Jeannette Kates","doi":"10.1177/10499091241304443","DOIUrl":"https://doi.org/10.1177/10499091241304443","url":null,"abstract":"<p><strong>Background: </strong>Palliative care (PC) is underutilized in the idiopathic pulmonary fibrosis (IPF) patient population, particularly in outpatient settings, despite high symptom burden and complex care needs. There is no clinician consensus for the most effective method of integrating PC into routine medical visits for this patient population, despite acknowledgement of its benefits. The purpose of this quality improvement (QI) project was to pilot an adapted nurse practitioner-led standardized PC lever tool for IPF in an outpatient clinic and evaluate the secondary PC referral rates during the implementation period.</p><p><strong>Design: </strong>The lever tool was implemented over a 3-month period. De-identified patient health information from the health system's electronic medical record system was used to compare referrals to PC prior to and during the implementation of the lever tool.</p><p><strong>Results: </strong>The established workflow for the nurse practitioner-led implementation of the tool was feasible. There were increased PC referrals and increased PC encounters during the QI period, however the results were not statistically significant.</p><p><strong>Conclusions: </strong>The findings of this QI project add to the limited existing literature evaluating PC referral methods for individuals with IPF in an outpatient setting. Further, the development process and workflow utilized confirms the feasibility of employing the nursing workforce to support the care needs of the IPF patient population.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091241304443"},"PeriodicalIF":0.0,"publicationDate":"2024-11-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142755800","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}