Annals of palliative medicine最新文献

{"title":"Caregiver needs in end-of-life care are diverse, yet invisible: a narrative review.","authors":"Alice Koo, Michelle Low, Zhi-Zheng Yeo, Jonathan Ee, Poh-Heng Chong","doi":"10.21037/apm-24-151","DOIUrl":"https://doi.org/10.21037/apm-24-151","url":null,"abstract":"<p><strong>Background and objective: </strong>Informal caregivers are essential to home-based end-of-life (EOL) care. However, their needs are often not well-understood and described in relation to caregiving, rather than with a 'caregiver-centric' perspective. This review aimed to provide an overview of research on EOL caregiver needs, discussing the types of needs, factors that influence them, and gaps in supporting caregivers.</p><p><strong>Methods: </strong>An unsystematic narrative review was performed to provide a broad overview of caregiver needs research. A targeted search was done on PubMed. Search terms included \"caregiver needs\", \"concerns\", \"experiences\", \"palliative\", \"hospice\", and \"end-of-life\". Qualitative and quantitative studies, reviews between January 2019 and November 2024. Selected papers were analysed to distil themes on the types of caregiver needs, as well as contextual factors and barriers that impact them. Assessment tools and processes were also included.</p><p><strong>Key content and findings: </strong>A total of 63 papers were included. Major findings showed that caregivers often prioritize 'care-enabling needs'-such as information access and logistic support-over their personal 'direct support' needs-which encompasses the need for validation, recognition of their autonomy, and relational needs. While caregiver needs are increasingly appreciated, there remained substantial gaps in addressing them, the extent of which also varying due to contextual factors, such as patient's condition, availability of resources, and cultural norms. Barriers identified included ongoing prioritization of patient needs above self, suboptimal cultural sensitivity among providers, and general lack of needs assessment tools.</p><p><strong>Conclusions: </strong>In EOL care, it is critical that providers acknowledge that caregivers are essential partners and a co-client to the patient. There is a need to recognize caregivers' direct support alongside care-enabling needs to ensure caregivers' well-being are also looked after. More attention can be given to increasing the visibility of caregiver needs by developing sensitivity to contextual factors and implementing assessment processes.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143668738","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":"Tunnelled catheters for palliative care outcomes: study protocol for a prospective, multicentre observational study (PRO ASEPT).","authors":"Sabrina Tofall, Sönke von Weihe, David Benjamin Ellebrecht","doi":"10.21037/apm-24-147","DOIUrl":"https://doi.org/10.21037/apm-24-147","url":null,"abstract":"<p><strong>Background: </strong>Managing pleural effusion and symptomatic ascites in palliative care is crucial for alleviating symptoms and significantly enhancing the quality of life (QoL) for affected patients. Choosing the appropriate treatment modality requires careful consideration of potential risks and benefits, as well as the patient's life expectancy. Tunnelled catheters offer a distinct advantage by allowing insertion in an outpatient setting, thereby reducing or avoiding hospitalization, maximizing time spent at home given the limited life expectancy, and necessitating fewer subsequent pleural procedures for symptom relief. This study protocol outlines a prospective, multicentre study aimed at gaining insights into QoL based on patients' palliative care outcomes. Additionally, it will evaluate the clinical use, safety, and performance of tunnelled catheters and drainage kits in the home environment.</p><p><strong>Methods: </strong>The multicentre prospective study will be conducted across five sites specialized in thoracic surgery and palliative care in Germany and will include a total of 150 patients. Participants will be patients with pleural effusion or ascites requiring a tunnelled catheter. Each patient will be followed postoperatively for at least 6 months. The primary focus will be on patient-reported palliative care outcomes using the validated Palliative Care Outcome Scale (POS) questionnaire. The POS, designed to assess palliative care needs, consists of 10 questions that evaluate physical, emotional, psychological, and spiritual needs. Additionally, the study will record and evaluate the implantation of the tunnelled catheter, the use of the drainage kit, and monitor short- and long-term complications.</p><p><strong>Discussion: </strong>The findings from this study will expand our understanding of patients' palliative care outcomes when using tunnelled catheters. Moreover, the results will provide deeper insights into the safety and clinical use of tunnelled catheters.</p><p><strong>Trial registration: </strong>The study was registered at the German Clinical Trial Register (DRKS): DRKS00031242, at 23 March, 2023.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143481821","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":"Palliative care for patients with chronic kidney disease and severe COVID-19 in Brazil: a retrospective study in a quaternary hospital.","authors":"Tulio L Correa, Mariana Sandoval Terra Campos Guelli, Ricardo Tavares de Carvalho","doi":"10.21037/apm-24-99","DOIUrl":"https://doi.org/10.21037/apm-24-99","url":null,"abstract":"<p><strong>Background: </strong>Patients with chronic kidney disease (CKD) have many special needs in the areas of symptom management, advanced care planning, and end-of-life care. We aimed to evaluate the palliative care (PC) provided to patients with CKD admitted with severe coronavirus disease 2019 (COVID-19) at the Clinics Hospital of the University of Sao Paulo Faculty of Medicine during the first wave of the pandemic.</p><p><strong>Methods: </strong>A retrospective observational study was conducted in a quaternary hospital. Patients assisted by the PC team with CKD in 2020 were selected according to a protocol for identifying patient at an elevated risk of death who require PC support. The clinical and demographic characteristics, as well as the outcomes, were assessed using electronic records.</p><p><strong>Results: </strong>A total of 217 patients with CKD were included in the study, of whom 44.2% were admitted to the intensive care unit (ICU). Patients with CKD had an increased relative risk (RR) of death [1.31, 95% confidence interval (CI): 1.12-1.53] but were not assisted by the PC team to a higher degree. Eighty patients with CKD (83.3%) died without being assisted by the PC team. Dialysis treatment and CKD grades were not significantly associated with PC assistance.</p><p><strong>Conclusions: </strong>Although patients with CKD experienced higher mortality rates, they did not receive PC at a significantly greater frequency and many died without receiving adequate end-of-life care during the COVID-19 pandemic in Brazil.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 1","pages":"4-12"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143439803","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":"Symptom management and ethics needs in patients with cancer and non-cancer advanced diseases.","authors":"Charles B Simone","doi":"10.21037/apm-25-9","DOIUrl":"https://doi.org/10.21037/apm-25-9","url":null,"abstract":"","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 1","pages":"105-107"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143439829","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 role of community health workers in a collaborative care management intervention for cancer pain management: a feasibility study for a randomized controlled trial.","authors":"Abby M Lohr, Joan M Griffin, Jhenitza P Raygoza, Marcus R Frick, Sarah A Minteer, Jon C Tilburt, Andrea L Cheville, Jessica D Austin","doi":"10.21037/apm-24-125","DOIUrl":"https://doi.org/10.21037/apm-24-125","url":null,"abstract":"<p><strong>Background: </strong>Despite the plausible role for community health workers (CHWs) in supporting historically disenfranchised patients experiencing cancer-related pain, few survivorship care models currently include CHWs. The purpose of our study was to learn from existing CHWs regarding the feasibility of working with rural dwelling and/or Hispanic/Latino patients and their cancer care teams; as well as assessing their anticipated barriers and facilitators of delivering a proposed collaborative care pain intervention [Achieving Equity through SocioCulturally-informed, Digitally-Enabled Cancer Pain managemeNT (ASCENT)].</p><p><strong>Methods: </strong>Guided by the National Institute on Minority Health and Health Disparities (NIMHD) Research Framework, we recruited experienced CHWs to a mixed-methods feasibility study, including survey, interview and/or focus group. The survey assessed CHWs' comfort level with proposed intervention-related tasks (e.g., working with patients diagnosed with cancer). Interviews and focus groups explored potential training needs, as well as perceived intervention implementation barriers and facilitators. We summarized results using descriptive statistics and a rapid qualitative analytic approach.</p><p><strong>Results: </strong>In total, 12 CHWs participated. Data included surveys (n=12), interviews (n=8), and a focus group with 4 participants. Overall, participant-CHWs felt confident they could participate in healthcare teams and remotely engage rural-dwelling and/or Hispanic/Latino patients diagnosed with cancer. Implementation barriers and facilitators included: working remotely in an unfamiliar geographic area, resource availability, technology, implementation-specific challenges, and patient level factors (e.g., loss of motivation).</p><p><strong>Conclusions: </strong>Participant-CHWs viewed serving on a multidisciplinary healthcare team to support Hispanic/Latino and rural-dwelling cancer patients experiencing pain as feasible but identified training and resourcing needs.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 1","pages":"13-28"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143439832","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":"Preparedness for the future in patients with relapsed or refractory hematopoietic malignancies in the treatment process: a qualitative study.","authors":"Kazuko Akashi, Yoshie Imai, Shingen Nakamura, Yusaku Maeda, Ryohei Sumitani, Masahiro Oura, Kimiko Sogabe, Mamiko Takahashi, Shiro Fujii, Takeshi Harada, Hirokazu Miki","doi":"10.21037/apm-24-124","DOIUrl":"https://doi.org/10.21037/apm-24-124","url":null,"abstract":"<p><strong>Background: </strong>This study aims to clarify how patients with relapsed or refractory (R/R) hematological malignancies prepare for the future and set treatment goals. R/R hematological malignancies often require intensive therapies, including stem cell transplantation and CAR-T cell therapy, which pose high risks of adverse events. Many patients continue aggressive treatment until the end of life for pain relief or even a potential cure, despite the significant symptom burden. Understanding each patient's treatment motivations and preferences is essential to aligning care with their individual values. By examining their experiences, current health status, and treatment goals, this study seeks to provide a basis for holding early discussions on future care, contributing to individualized decision-making support for patients facing limited treatment options and uncertain prognoses.</p><p><strong>Methods: </strong>A qualitative descriptive study design was used to conduct semi-structured interviews with 16 patients with relapsed/refractory hematopoietic malignancies who were hospitalized for chemotherapy.</p><p><strong>Results: </strong>The four main themes expressed by the participants were (I) I want to live through the treatment until the end of my life because I know recovery is difficult; (II) my current treatment depends on how much my body can endure; (III) I want to keep trying, but I am at the limit of what I can do now; and (IV) I want to continue even if the treatment is limited because I think it will help someone else.</p><p><strong>Conclusions: </strong>Patients with hematopoietic malignancies who are undergoing treatment may be motivated by a variety of different factors to continue with treatment. Discussing patients' goals and wishes with respect to treatment is critically important to ensure that such treatment is aligned with patients' preferences.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 1","pages":"43-56"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143439809","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":"Active treatment at the end of life-importance of palliative care in advanced non-small cell lung cancer: a cohort study.","authors":"Luis Posado-Domínguez, Alejandro Olivares-Hernández, Lorena Bellido-Hernández, María Martín-Galache, Jonnathan Roldán-Ruíz, Laura Corvo-Félix, Emilio Fonseca-Sánchez, Edel Del Barco-Morillo","doi":"10.21037/apm-24-97","DOIUrl":"https://doi.org/10.21037/apm-24-97","url":null,"abstract":"<p><strong>Background: </strong>Palliative care focuses on improving the quality of life and comfort of patients in the last stages of their disease by providing relief for pain and other distressing symptoms, and it integrates physical, psychological, and spiritual aspects. The main objective of this study is to assess the impact of palliative care in the administration of active treatment during the last 3 weeks of life of patients with advanced non-small cell lung cancer (NSCLC) and its impact on survival after the last treatment cycle.</p><p><strong>Methods: </strong>A retrospective study was conducted across two centers, analyzing data from both sites to evaluate outcomes and trends in patient care. It includes 118 deceased patients who had been diagnosed with NSCLC between 1/1/2019 and 30/4/2024. The patients had received at least one cycle of active treatment with chemotherapy, immunotherapy, or both. Patients with druggable mutations in their first line were excluded.</p><p><strong>Results: </strong>Overall survival (OS) after the last cycle was 56 days in the patients treated by the palliative care unit [95% confidence interval (CI): 41.6-70.4] vs. 27 days for those who were not treated by the unit (95% CI: 19.4-34.5) (Plog-rank<0.001); hazard ratio (HR) 3.23 (95% CI: 2.01-5.13) (P<0.001). In patients ≥75 years old, survival after the last cycle was 47 days (95% CI: 33.9-60.1) vs. 34 days (95% CI: 24.9-43.1) for those <75 years old (Plog-rank<0.001). In patients with ECOG 2, the survival after the last cycle was 56 days for those assessed by the palliative care unit (95% CI: 42.9-69.1) vs. 23 days (95% CI: 19.5-26.5) for those who had not been assessed (Plog-rank<0.001). In patients who had been assessed by the palliative care unit, the odds ratio (OR) to receive treatment in the last 3 weeks of life was 0.20 (95% CI: 0.07-0.57) (P=0.002). In patients under 75 years old, the OR was 2.83 (95% CI: 1.03-7.72) (P=0.042).</p><p><strong>Conclusions: </strong>The assessment by multidisciplinary teams that integrate palliative care doctors has a significant impact on the decision to withhold active treatment over the last 3 weeks of life in patients with advanced NSCLC. The greatest benefit is observed in patients with performance status measured by Eastern Cooperative Oncology Group (ECOG) ≥2.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 1","pages":"29-42"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143439716","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":"Subcutaneous dexmedetomidine for sedation of agitated delirium in palliative care.","authors":"Julie Lapenskie, James Downar, Amanda Wolfe, Nadia Polskaia, Kate van den Berg, Christine Watt, Shirley H Bush, Kaitlyn Boese, Christopher J Barnes, Henrique A Parsons, Salmaan Kanji, Brandon Heidinger, Peter G Lawlor","doi":"10.21037/apm-24-132","DOIUrl":"https://doi.org/10.21037/apm-24-132","url":null,"abstract":"<p><strong>Background: </strong>Agitated delirium frequently poses management challenges in palliative care. Interventions are needed to manage delirium yet allow meaningful end-of-life communication. Dexmedetomidine can provide wakeful sedation and may fill this therapeutic need. Our objectives were to study the safety and efficacy of using dexmedetomidine in inpatients with agitated delirium.</p><p><strong>Methods: </strong>In a prospective study, ten adult patients received a dexmedetomidine infusion for agitated delirium in the Bruyère Health inpatient Palliative Care Unit. Following the introduction of an approved subcutaneous dexmedetomidine protocol, doses (range, 0.2-0.7 mcg/kg/h) were titrated to achieve wakeful sedation, targeting a Richmond Agitation-Sedation Scale Palliative version (RASS-PAL) level of -1 to +1.</p><p><strong>Results: </strong>Seventy percent (7/10), 50% (4/8), and 83% (5/6) of patients achieved the RASS-PAL target sedation level at least once per day on Days 1, 2, and 3 of dexmedetomidine infusion, respectively. Those who did not consistently achieve target sedation typically died in less than 3 days. Most patients (n=7) received a maximum dexmedetomidine dose of 0.4-0.5 mcg/kg/h. Dexmedetomidine was discontinued prior to death in five cases due to perceived ineffectiveness (n=1), family requesting deeper sedation (n=1), asymptomatic hypotension (n=2), or bradycardia (n=1). In patients with transient hypotension or bradycardia, death occurred 19 h to 18 days following dexmedetomidine discontinuation.</p><p><strong>Conclusions: </strong>Subcutaneous dexmedetomidine infusion may be a safe and effective way of providing wakeful sedation for patients with agitated delirium in palliative care. However, prospective, controlled studies with standardized approaches to co-sedative and analgesia management are needed to better determine efficacy, adverse effects, and inform patient selection.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 1","pages":"57-66"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143439825","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 current landscape of oncologic emergencies: the role of radiotherapy.","authors":"Stephanie K Schaub, Charles B Simone, Simon S Lo, J Isabelle Choi","doi":"10.21037/apm-24-159","DOIUrl":"10.21037/apm-24-159","url":null,"abstract":"","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"1-3"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142969512","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":"Palliative care in the older adult with advanced lung disease.","authors":"Elaine Chen, Sean O'Mahony","doi":"10.21037/apm-24-111","DOIUrl":"https://doi.org/10.21037/apm-24-111","url":null,"abstract":"<p><p>Advanced lung disease, including chronic obstructive pulmonary disease (COPD) and various types of interstitial lung disease (ILD), are common disabling respiratory conditions with increasing prevalence in older adults. In this chapter, we provide an overview of COPD and ILD along with a summary of palliative care issues relevant to these populations. While the diseases tend to be gradually progressive, the time course and prognostication is highly variable with long periods of stability and occasional severe exacerbations. The symptom burden in advanced lung disease is high, with significant dyspnea, including physiologic dyspnea from hypoxia and hypercarbia as well as psychological, spiritual, interpersonal aspects of dyspnea which together are described as \"total dyspnea\". Functional status is often significantly impaired, and co-morbid depression and anxiety are common. Palliative care is important for symptom management as well as advance care planning (ACP) and end-of-life (EOL) preparations. Non-pharmacologic interventions should be the first line for approaching dyspnea, and pulmonary rehabilitation is an important avenue for improving functional status and providing palliative care education. Opioids are available for pharmacologic management of refractory dyspnea. Early palliative care is important for people with COPD and ILD, as they learn to navigate the burdens of chronic illness. Further research and education are needed to enhance palliative care efforts in this complex population.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 1","pages":"90-100"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143439807","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}