Pub Date : 2024-07-01Epub Date: 2024-07-19DOI: 10.21037/apm-23-238
Monica Chelius, Meng Xu-Welliver, John P Plastaras
Hematologic oncologic emergencies with an urgent indication for radiation are a relatively routine occurrence for the radiation oncologist. As patients are living longer and have multiple treatment options for their relapsed or refractory diseases, it is important that palliative treatments avoid precluding patients from or delaying next-line potentially curative treatments wherever possible. We highlight the following experiences from our clinical practice: newly diagnosed plasma cell disease causing cord compression; life threatening cutaneous lymphoma with tumors covering the majority of the body surface area; and relapsed/refractory diffuse large B-cell lymphoma (DLBCL) requiring bridging radiation to a mass impinging on the brachial plexus combined with chimeric antigen receptor (CAR)-T cell therapy. In each case, urgent palliative radiation was utilized, but the approaches were nuanced, with careful consideration of subsequent potential therapies and how the current course of radiation should be tailored for the best interplay with the overall treatment course and trajectory of the disease. With the rapid development of new therapies, it can be difficult to stay up to date on the most recent practice guidelines. Drawing on hematologic-specific guidelines, such as those provided by the International Lymphoma Radiation Oncology Group, and disease site experts can aid in ensuring patients are appropriately palliated and eligible for future therapies.
{"title":"Palliating hematologic oncologic emergencies with radiation in the age of targeted systemic therapies: three illustrative cases.","authors":"Monica Chelius, Meng Xu-Welliver, John P Plastaras","doi":"10.21037/apm-23-238","DOIUrl":"10.21037/apm-23-238","url":null,"abstract":"<p><p>Hematologic oncologic emergencies with an urgent indication for radiation are a relatively routine occurrence for the radiation oncologist. As patients are living longer and have multiple treatment options for their relapsed or refractory diseases, it is important that palliative treatments avoid precluding patients from or delaying next-line potentially curative treatments wherever possible. We highlight the following experiences from our clinical practice: newly diagnosed plasma cell disease causing cord compression; life threatening cutaneous lymphoma with tumors covering the majority of the body surface area; and relapsed/refractory diffuse large B-cell lymphoma (DLBCL) requiring bridging radiation to a mass impinging on the brachial plexus combined with chimeric antigen receptor (CAR)-T cell therapy. In each case, urgent palliative radiation was utilized, but the approaches were nuanced, with careful consideration of subsequent potential therapies and how the current course of radiation should be tailored for the best interplay with the overall treatment course and trajectory of the disease. With the rapid development of new therapies, it can be difficult to stay up to date on the most recent practice guidelines. Drawing on hematologic-specific guidelines, such as those provided by the International Lymphoma Radiation Oncology Group, and disease site experts can aid in ensuring patients are appropriately palliated and eligible for future therapies.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"1101-1113"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141750856","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}
Background and objective: Malignant ascites (MA) is common in patients with advanced cancer, and about 60% of patients with MA experience distressing symptoms. In addition, MA has been identified as a poor prognostic factor, therefore, making the management of MA an important issue. We aimed to review literature describing MA provide a narrative synthesis of relevant studies.
Methods: A literature search of articles published between 1971 and May 2023 was performed in PubMed, and Cochrane library using the words "ascites/malignant ascites" and the theme of each section. Authors independently selected the articles used and summarized. Finally, this manuscript was obtained consensus through discussed among all authors.
Key content and findings: The pathophysiological mechanism of ascites formation involves increased vascular permeability and impaired fluid drainage through the lymphatic system, which explain the occurrence of peritoneal carcinomatosis, portal hypertension due to liver tumors, liver cirrhosis in the background of hepatocellular carcinoma, and Budd-Chiari syndrome caused by tumor occlusion of the hepatic vein. The efficacy and safety of various treatments and procedures have been investigated previously; however, no treatment guidelines have been established yet. Diuretics and paracentesis are often selected as the first lines of treatment. Intraperitoneal drug administration (catumaxomab, bevacizumab, aflibercept, hyperthermic intraperitoneal chemotherapy, triamcinolone), indwelling peritoneal catheters, peritoneovenous shunting, and cell-free and concentrated ascites reinfusion therapy are commonly used to manage refractory ascites. A new device for this purpose is alfapump, which transfers ascites fluid from the peritoneum into the urinary bladder. In addition, thoracic epidural analgesia may be effective for managing ascites-related symptoms.
Conclusions: Despite these options, no standard treatment for MA has been established yet because few trials have been conducted in this area. There are many issues to be investigated, and future research and treatment development are expected.
背景和目的:恶性腹水(MA)常见于晚期癌症患者,约 60% 的恶性腹水患者会出现令人痛苦的症状。此外,恶性腹水已被确定为不良预后因素,因此,如何处理恶性腹水成为一个重要问题。我们旨在回顾描述 MA 的文献,对相关研究进行叙述性综述:在 PubMed 和 Cochrane 图书馆中使用 "腹水/恶性腹水 "和各章节主题对 1971 年至 2023 年 5 月间发表的文章进行文献检索。作者独立选择所用文章并进行总结。最后,本稿件经所有作者讨论达成共识:腹水形成的病理生理机制包括血管通透性增加和淋巴系统液体引流障碍,这解释了腹膜癌、肝肿瘤引起的门静脉高压、肝细胞癌背景下的肝硬化以及肿瘤堵塞肝静脉引起的巴德-奇异综合征的发生。此前已对各种治疗方法和程序的有效性和安全性进行了研究,但尚未制定治疗指南。通常选择利尿剂和腹腔穿刺术作为首选治疗方法。腹腔内给药(卡妥莫单抗、贝伐单抗、阿弗利百普、腹腔热化疗、曲安奈德)、留置腹腔导管、腹腔静脉分流、无细胞和浓缩腹水再灌注疗法是治疗难治性腹水的常用方法。一种新的腹水回输设备是 alfapump,它能将腹水从腹膜转移到膀胱。此外,胸腔硬膜外镇痛也可有效控制腹水相关症状:尽管有这些选择,但由于在这一领域进行的试验很少,因此尚未确立治疗 MA 的标准疗法。还有许多问题有待研究,未来的研究和治疗发展值得期待。
{"title":"Narrative review of malignant ascites: epidemiology, pathophysiology, assessment, and treatment.","authors":"Takako Ikegami, Hiroto Ishiki, Toru Kadono, Tetsuya Ito, Naosuke Yokomichi","doi":"10.21037/apm-23-554","DOIUrl":"10.21037/apm-23-554","url":null,"abstract":"<p><strong>Background and objective: </strong>Malignant ascites (MA) is common in patients with advanced cancer, and about 60% of patients with MA experience distressing symptoms. In addition, MA has been identified as a poor prognostic factor, therefore, making the management of MA an important issue. We aimed to review literature describing MA provide a narrative synthesis of relevant studies.</p><p><strong>Methods: </strong>A literature search of articles published between 1971 and May 2023 was performed in PubMed, and Cochrane library using the words \"ascites/malignant ascites\" and the theme of each section. Authors independently selected the articles used and summarized. Finally, this manuscript was obtained consensus through discussed among all authors.</p><p><strong>Key content and findings: </strong>The pathophysiological mechanism of ascites formation involves increased vascular permeability and impaired fluid drainage through the lymphatic system, which explain the occurrence of peritoneal carcinomatosis, portal hypertension due to liver tumors, liver cirrhosis in the background of hepatocellular carcinoma, and Budd-Chiari syndrome caused by tumor occlusion of the hepatic vein. The efficacy and safety of various treatments and procedures have been investigated previously; however, no treatment guidelines have been established yet. Diuretics and paracentesis are often selected as the first lines of treatment. Intraperitoneal drug administration (catumaxomab, bevacizumab, aflibercept, hyperthermic intraperitoneal chemotherapy, triamcinolone), indwelling peritoneal catheters, peritoneovenous shunting, and cell-free and concentrated ascites reinfusion therapy are commonly used to manage refractory ascites. A new device for this purpose is alfapump, which transfers ascites fluid from the peritoneum into the urinary bladder. In addition, thoracic epidural analgesia may be effective for managing ascites-related symptoms.</p><p><strong>Conclusions: </strong>Despite these options, no standard treatment for MA has been established yet because few trials have been conducted in this area. There are many issues to be investigated, and future research and treatment development are expected.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"842-857"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140855925","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}
Pub Date : 2024-07-01Epub Date: 2024-04-28DOI: 10.21037/apm-23-575
Helena I Kurniawan, Kate R Sciacca, Melissa W Wachterman, Samantha L Gelfand
With a growing geriatric population in the United States, there is an increased need for healthcare resources and collaborative care for serious illnesses. Patients with chronic illnesses including chronic kidney disease (CKD) often experience severe symptoms and face complex decisions, many of which develop or occur in the outpatient setting. Though many of these symptoms overlap between different chronic illnesses, the CKD population remains largely untapped in terms of access to said resources; until recently, the focus in palliative care has been largely in the oncologic population. Older patients with CKD may benefit from additional tools and resources provided from collaborative care models specifically involving palliative care, especially as this population is high risk for experiencing lack of support. In this review, we use case vignettes to discuss the key concepts and roles of outpatient palliative care and how they can be integrated into the nephrology care of older patients with advanced kidney disease. These highlighted concepts include shared decision-making, selective deprescribing and symptom management, psychosocial support, and advance care planning. We also review different outpatient models for integrative palliative care, and the roles and resources of the palliative multidisciplinary team within these models and how these models can potentially be implemented in the care of CKD patients.
{"title":"Clinical practice review: outpatient palliative care for the geriatric chronic kidney disease population.","authors":"Helena I Kurniawan, Kate R Sciacca, Melissa W Wachterman, Samantha L Gelfand","doi":"10.21037/apm-23-575","DOIUrl":"10.21037/apm-23-575","url":null,"abstract":"<p><p>With a growing geriatric population in the United States, there is an increased need for healthcare resources and collaborative care for serious illnesses. Patients with chronic illnesses including chronic kidney disease (CKD) often experience severe symptoms and face complex decisions, many of which develop or occur in the outpatient setting. Though many of these symptoms overlap between different chronic illnesses, the CKD population remains largely untapped in terms of access to said resources; until recently, the focus in palliative care has been largely in the oncologic population. Older patients with CKD may benefit from additional tools and resources provided from collaborative care models specifically involving palliative care, especially as this population is high risk for experiencing lack of support. In this review, we use case vignettes to discuss the key concepts and roles of outpatient palliative care and how they can be integrated into the nephrology care of older patients with advanced kidney disease. These highlighted concepts include shared decision-making, selective deprescribing and symptom management, psychosocial support, and advance care planning. We also review different outpatient models for integrative palliative care, and the roles and resources of the palliative multidisciplinary team within these models and how these models can potentially be implemented in the care of CKD patients.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"938-947"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140911006","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}
Pub Date : 2024-07-01Epub Date: 2024-06-25DOI: 10.21037/apm-24-76
Anna Kitta, Eva Katharina Masel
{"title":"Unveiling narrative medicine in palliative care.","authors":"Anna Kitta, Eva Katharina Masel","doi":"10.21037/apm-24-76","DOIUrl":"10.21037/apm-24-76","url":null,"abstract":"","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"751-753"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141578766","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}
Pub Date : 2024-07-01Epub Date: 2024-07-08DOI: 10.21037/apm-23-582
Constance Dahlin, Patricia Moyle Wright
Palliative care (PC) is a health care specialty that is focused on the holistic care of individuals with serious illness. It requires interprofessional collaboration and expertise to meet the physical, psychosocial, social, cultural, and spiritual needs of patients experiencing serious illness and their families. The interprofessional team (IPT) is most often composed of Advanced Practice Providers (APPs) [including Nurse Practitioners (NPs), Clinical Nurse Specialists (CNSs), and Physician Associates/Assistants (PAs)], Chaplains, Registered Nurses (RNs), Doctors of Medicine and Doctors of Osteopathic Medicine (MDs/DOs), Registered Pharmacists (RPhs), Social Workers (SWs) and other professions depending on site of care, the age of the patient, and the illness. The United States has specialty palliative care (SPC) IPT members who have completed advanced education and training and obtained specialty certification. However, there is currently no interprofessional consensus education and training resulting in interprofessional variability of definitions of education and requirements for academic preparation into the specialty. This article offers the results of an online review and survey of the current availability of SPC education in the United States which includes certificate programs, residencies, fellowships, and immersion programs available to each profession. The purpose of this review is to unify the available information regarding SPC programs, providing a succinct, yet thorough, overview of the SPC educational landscape. It emphasizes the length of time, cost, and delivery method for IPT members in choosing programs.
{"title":"A survey of current specialty palliative care education in the United States.","authors":"Constance Dahlin, Patricia Moyle Wright","doi":"10.21037/apm-23-582","DOIUrl":"10.21037/apm-23-582","url":null,"abstract":"<p><p>Palliative care (PC) is a health care specialty that is focused on the holistic care of individuals with serious illness. It requires interprofessional collaboration and expertise to meet the physical, psychosocial, social, cultural, and spiritual needs of patients experiencing serious illness and their families. The interprofessional team (IPT) is most often composed of Advanced Practice Providers (APPs) [including Nurse Practitioners (NPs), Clinical Nurse Specialists (CNSs), and Physician Associates/Assistants (PAs)], Chaplains, Registered Nurses (RNs), Doctors of Medicine and Doctors of Osteopathic Medicine (MDs/DOs), Registered Pharmacists (RPhs), Social Workers (SWs) and other professions depending on site of care, the age of the patient, and the illness. The United States has specialty palliative care (SPC) IPT members who have completed advanced education and training and obtained specialty certification. However, there is currently no interprofessional consensus education and training resulting in interprofessional variability of definitions of education and requirements for academic preparation into the specialty. This article offers the results of an online review and survey of the current availability of SPC education in the United States which includes certificate programs, residencies, fellowships, and immersion programs available to each profession. The purpose of this review is to unify the available information regarding SPC programs, providing a succinct, yet thorough, overview of the SPC educational landscape. It emphasizes the length of time, cost, and delivery method for IPT members in choosing programs.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"1035-1046"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141578801","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}
Pub Date : 2024-07-01Epub Date: 2024-06-25DOI: 10.21037/apm-24-39
Jane Christine Rodrigues Magalhães, Augusto Etchegaray, Gisele Mara Silva Gonçalves
Background: The global need for palliative care (PC) is increasing, especially as the population ages. The diagnosis of a life-threatening illness triggers numerous decisions by healthcare professionals (HCPs). How these professionals understand and deal with PC influences the quantity and quality of care provided to patients. This systematic review aimed to compare perceptions of PC among HCPs around the world.
Methods: The databases (MEDLINE/PubMed, Embase, LILACS, and EBSCO) were searched systematically. Articles reporting on the perception of HCPs, published between January 2012 and December 2022, were included. Texts that reported the perceptions of family members and patients were excluded to avoid the risk of bias. Those included were organized by country/region and continent for later analysis.
Results: Of the 2,063 articles initially retrieved 32 were included and provided relevant information from four continents (America, Asia, Europe, and Oceania). Most of this was done through interviews and questionnaires. All HCPs consulted in the studies recognized the importance of PC. The perception of these professionals was influenced by cultural factors (such as religion), difficulties perceived in each country/region (such as inadequate knowledge, conceptual confusion, etc.), diseases, and the age range of patients served. The acceptance and preparation of professionals to deal with this topic in their routine also influenced their perceptions of HCPs. The limitation of this research is the lack of eligible studies from Africa and the small number of participants in some studies.
Conclusions: It can be concluded that HCPs' perceptions of PC are similar, regardless of their country of origin.
背景:全球对姑息关怀(PC)的需求与日俱增,尤其是随着人口老龄化的加剧。诊断出危及生命的疾病后,医疗保健专业人员(HCPs)会做出许多决定。这些专业人员对姑息关怀的理解和处理方式影响着为患者提供的关怀服务的数量和质量。本系统综述旨在比较世界各地医护人员对 PC 的看法:对数据库(MEDLINE/PubMed、Embase、LILACS 和 EBSCO)进行了系统检索。收录了 2012 年 1 月至 2022 年 12 月间发表的有关 HCP 感知的文章。为避免偏倚风险,排除了报告家庭成员和患者看法的文章。纳入的文章按国家/地区和大洲进行分类,以便日后分析:在最初检索到的 2063 篇文章中,有 32 篇被收录,并提供了来自四大洲(美洲、亚洲、欧洲和大洋洲)的相关信息。大部分信息是通过访谈和问卷调查获得的。研究中咨询的所有保健专业人员都认识到 PC 的重要性。这些专业人员的看法受到文化因素(如宗教)、每个国家/地区所面临的困难(如知识不足、概念混淆等)、疾病和所服务患者的年龄范围的影响。专业人员在日常工作中对这一主题的接受程度和准备情况也影响了他们对 HCP 的看法。这项研究的局限性在于缺乏来自非洲的符合条件的研究,以及一些研究的参与者人数较少:结论:可以得出结论,无论来自哪个国家,保健专业人员对 PC 的看法都是相似的。
{"title":"Comparison of the perception of palliative care by healthcare professionals in some countries around the world: a systematic review.","authors":"Jane Christine Rodrigues Magalhães, Augusto Etchegaray, Gisele Mara Silva Gonçalves","doi":"10.21037/apm-24-39","DOIUrl":"10.21037/apm-24-39","url":null,"abstract":"<p><strong>Background: </strong>The global need for palliative care (PC) is increasing, especially as the population ages. The diagnosis of a life-threatening illness triggers numerous decisions by healthcare professionals (HCPs). How these professionals understand and deal with PC influences the quantity and quality of care provided to patients. This systematic review aimed to compare perceptions of PC among HCPs around the world.</p><p><strong>Methods: </strong>The databases (MEDLINE/PubMed, Embase, LILACS, and EBSCO) were searched systematically. Articles reporting on the perception of HCPs, published between January 2012 and December 2022, were included. Texts that reported the perceptions of family members and patients were excluded to avoid the risk of bias. Those included were organized by country/region and continent for later analysis.</p><p><strong>Results: </strong>Of the 2,063 articles initially retrieved 32 were included and provided relevant information from four continents (America, Asia, Europe, and Oceania). Most of this was done through interviews and questionnaires. All HCPs consulted in the studies recognized the importance of PC. The perception of these professionals was influenced by cultural factors (such as religion), difficulties perceived in each country/region (such as inadequate knowledge, conceptual confusion, etc.), diseases, and the age range of patients served. The acceptance and preparation of professionals to deal with this topic in their routine also influenced their perceptions of HCPs. The limitation of this research is the lack of eligible studies from Africa and the small number of participants in some studies.</p><p><strong>Conclusions: </strong>It can be concluded that HCPs' perceptions of PC are similar, regardless of their country of origin.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"1090-1100"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141578802","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}
Pub Date : 2024-07-01Epub Date: 2024-07-08DOI: 10.21037/apm-23-598
Sophie Meesters, Karin Ohler, Raymond Voltz, Frank Schulz-Nieswandt, Sabine Eichberg, Julia Strupp, Kerstin Kremeike
Background: Compassionate communities aim to empower people to deal with death, dying, and bereavement. They also intend to facilitate access to care and support at the end of life. However, there is a need for systematic knowledge on how to achieve the desired outcomes for citizens and for insights regarding the development, implementation, and evaluation. The aim of this study was to assess the views of members of a German Compassionate City, the "Caring Community Cologne" (CCC), and to report on its practical implementation.
Methods: The CCC consists of a citywide Round Table, a Steering Group, a Coordination Office and four Working Groups in areas where activities are already in place. We conducted two qualitative focus groups with nine members of three Working Groups. The transcripts were analysed with qualitative content analysis, using MAXQDA version 2022, and results were transferred into the logic model "Throughput Model".
Results: At the time of evaluation, participants felt that the structures of the CCC were adequate, but criticised the cooperation and transparency between them. A key aspect of this was the requirement for a coordinating body. They stressed the support of federal institutions as a key factor, while at the same time describing insufficient citizen involvement. The transfer of the results into the Throughput Model highlighted four areas that the CCC should address: (I) neighbourhood networks need to be established to strengthen civic support; (II) people need to be made aware of the issues by making them accessible in their everyday lives; (III) the many existing support initiatives need to be better linked and made more accessible; (IV) adequate healthcare service structures have to be guaranteed.
Conclusions: The top-down approach described, supported by the city's engagement and involving existing initiatives can facilitate the development of a bottom-up civic engagement model in a large city. However, active citizen involvement appeared to be a challenge. The Throughput Model was a suitable basis for mapping work processes and developing evaluation plans.
{"title":"How can a community be successfully empowered to deal with death, dying, and bereavement?-formative evaluation of the Caring Community Cologne using focus groups.","authors":"Sophie Meesters, Karin Ohler, Raymond Voltz, Frank Schulz-Nieswandt, Sabine Eichberg, Julia Strupp, Kerstin Kremeike","doi":"10.21037/apm-23-598","DOIUrl":"10.21037/apm-23-598","url":null,"abstract":"<p><strong>Background: </strong>Compassionate communities aim to empower people to deal with death, dying, and bereavement. They also intend to facilitate access to care and support at the end of life. However, there is a need for systematic knowledge on how to achieve the desired outcomes for citizens and for insights regarding the development, implementation, and evaluation. The aim of this study was to assess the views of members of a German Compassionate City, the \"Caring Community Cologne\" (CCC), and to report on its practical implementation.</p><p><strong>Methods: </strong>The CCC consists of a citywide Round Table, a Steering Group, a Coordination Office and four Working Groups in areas where activities are already in place. We conducted two qualitative focus groups with nine members of three Working Groups. The transcripts were analysed with qualitative content analysis, using MAXQDA version 2022, and results were transferred into the logic model \"Throughput Model\".</p><p><strong>Results: </strong>At the time of evaluation, participants felt that the structures of the CCC were adequate, but criticised the cooperation and transparency between them. A key aspect of this was the requirement for a coordinating body. They stressed the support of federal institutions as a key factor, while at the same time describing insufficient citizen involvement. The transfer of the results into the Throughput Model highlighted four areas that the CCC should address: (I) neighbourhood networks need to be established to strengthen civic support; (II) people need to be made aware of the issues by making them accessible in their everyday lives; (III) the many existing support initiatives need to be better linked and made more accessible; (IV) adequate healthcare service structures have to be guaranteed.</p><p><strong>Conclusions: </strong>The top-down approach described, supported by the city's engagement and involving existing initiatives can facilitate the development of a bottom-up civic engagement model in a large city. However, active citizen involvement appeared to be a challenge. The Throughput Model was a suitable basis for mapping work processes and developing evaluation plans.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"778-790"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141578805","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}
Pub Date : 2024-07-01Epub Date: 2023-11-07DOI: 10.21037/apm-23-503
Elena Gupta, Pragnesh Patel
Dementia is one of the leading causes of death in the US. Approximately, 6 million elderly people in the US had dementia in 2020. Advanced dementia is complicated by multiple problems that can lead to distress in both the patient and their caregivers. With the increase in aging population, physicians will be expected to take care of patients with dementia. Palliative and hospice care can play an important part in helping to alleviate physical symptoms as well as address non-medical/spiritual needs. In this review article, we highlight the patient-centered approach to treat symptoms and patient's needs to improve their quality of life. We discuss the most important and persistent challenges in advanced dementia with the aim to provide excellent care at the end-of-life and caregiver experience. Data were identified by using PubMed, EBSCO, and Google Scholar databases (January 1980 to present) using the following search terms: dementia, palliative care, advanced dementia, and hospice care. The search was repeated using geriatrics, end-of-life, decision making, advanced care, capacity evaluation, nutrition, infections, pain management, dyspnea, delirium, de-prescribing, and spiritual care. Additional review of literature was undertaken using relevant references of identified articles. There are many missed opportunities to improve care in this vulnerable patient population that when addressed can lead to peaceful and dignified death.
{"title":"Palliative care in dementia.","authors":"Elena Gupta, Pragnesh Patel","doi":"10.21037/apm-23-503","DOIUrl":"10.21037/apm-23-503","url":null,"abstract":"<p><p>Dementia is one of the leading causes of death in the US. Approximately, 6 million elderly people in the US had dementia in 2020. Advanced dementia is complicated by multiple problems that can lead to distress in both the patient and their caregivers. With the increase in aging population, physicians will be expected to take care of patients with dementia. Palliative and hospice care can play an important part in helping to alleviate physical symptoms as well as address non-medical/spiritual needs. In this review article, we highlight the patient-centered approach to treat symptoms and patient's needs to improve their quality of life. We discuss the most important and persistent challenges in advanced dementia with the aim to provide excellent care at the end-of-life and caregiver experience. Data were identified by using PubMed, EBSCO, and Google Scholar databases (January 1980 to present) using the following search terms: dementia, palliative care, advanced dementia, and hospice care. The search was repeated using geriatrics, end-of-life, decision making, advanced care, capacity evaluation, nutrition, infections, pain management, dyspnea, delirium, de-prescribing, and spiritual care. Additional review of literature was undertaken using relevant references of identified articles. There are many missed opportunities to improve care in this vulnerable patient population that when addressed can lead to peaceful and dignified death.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"791-807"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89716635","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}
Pub Date : 2024-07-01Epub Date: 2024-07-03DOI: 10.21037/apm-24-65
Pragnesh Patel, Lara Skarf, Susan Nathan
{"title":"Palliative care of older adults.","authors":"Pragnesh Patel, Lara Skarf, Susan Nathan","doi":"10.21037/apm-24-65","DOIUrl":"10.21037/apm-24-65","url":null,"abstract":"","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"749-750"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141578806","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}
Pub Date : 2024-07-01Epub Date: 2024-05-09DOI: 10.21037/apm-23-550
Phanthira C Tamsukhin, Raffaele M Bernardo, Serife Eti
Human immunodeficiency virus (HIV) has historically been viewed as a terminal condition affecting younger populations, however, with advancements in antiretroviral therapy (ART) and better healthcare provisions, people with HIV are now living longer than ever before. This shift has highlighted the need to readdress the end-of-life care needs of patients aging with HIV. People aging with HIV face a double burden. Aging itself comes with an array of health challenges, including cognitive decline, frailty, and increased susceptibility to chronic illnesses. Despite effective management with ART, HIV is associated with ongoing inflammation, and may accelerate aging processes, increasing the risk of certain cancers and comorbidities, as well as an increased risk of cardiovascular disease. The stigma surrounding HIV, though diminished over the years, still lingers. People living with HIV have experienced decades of intersecting stigmatized identities in the context of social isolation, leading to potential psychological challenges like depression, anxiety, and loneliness, all of which may be amplified by aging. Addressing these emotional and social needs is as crucial as managing their physical health. The integration of primary palliative care into geriatric practice is crucial, as it improves the quality of life for older patients with chronic illnesses, life-limiting conditions. This is particularly relevant for aging individuals with HIV, who often face complex medical needs and multiple comorbidities. Primary palliative care is the basic, integrated palliative care support provided by non-specialists as part of routine care, while specialist palliative care involves more complex and specialized support from a team with specific training in palliative care. Incorporating palliative care principles enables geriatric healthcare providers to address these comprehensive needs more effectively. This approach encompasses not only physical symptom management but also the emotional well-being of patients. It aids in advanced care planning and decision-making that resonate with the patients' values and goals. Ultimately, this integrated approach leads to improved patient outcomes and a higher quality of care. This review delves into the unique considerations and challenges of providing palliative care to people aging with HIV, recognizing the interplay of age and HIV in the era of modern ART.
{"title":"Palliative care considerations for the older adults with HIV/AIDS: a clinical practice review.","authors":"Phanthira C Tamsukhin, Raffaele M Bernardo, Serife Eti","doi":"10.21037/apm-23-550","DOIUrl":"10.21037/apm-23-550","url":null,"abstract":"<p><p>Human immunodeficiency virus (HIV) has historically been viewed as a terminal condition affecting younger populations, however, with advancements in antiretroviral therapy (ART) and better healthcare provisions, people with HIV are now living longer than ever before. This shift has highlighted the need to readdress the end-of-life care needs of patients aging with HIV. People aging with HIV face a double burden. Aging itself comes with an array of health challenges, including cognitive decline, frailty, and increased susceptibility to chronic illnesses. Despite effective management with ART, HIV is associated with ongoing inflammation, and may accelerate aging processes, increasing the risk of certain cancers and comorbidities, as well as an increased risk of cardiovascular disease. The stigma surrounding HIV, though diminished over the years, still lingers. People living with HIV have experienced decades of intersecting stigmatized identities in the context of social isolation, leading to potential psychological challenges like depression, anxiety, and loneliness, all of which may be amplified by aging. Addressing these emotional and social needs is as crucial as managing their physical health. The integration of primary palliative care into geriatric practice is crucial, as it improves the quality of life for older patients with chronic illnesses, life-limiting conditions. This is particularly relevant for aging individuals with HIV, who often face complex medical needs and multiple comorbidities. Primary palliative care is the basic, integrated palliative care support provided by non-specialists as part of routine care, while specialist palliative care involves more complex and specialized support from a team with specific training in palliative care. Incorporating palliative care principles enables geriatric healthcare providers to address these comprehensive needs more effectively. This approach encompasses not only physical symptom management but also the emotional well-being of patients. It aids in advanced care planning and decision-making that resonate with the patients' values and goals. Ultimately, this integrated approach leads to improved patient outcomes and a higher quality of care. This review delves into the unique considerations and challenges of providing palliative care to people aging with HIV, recognizing the interplay of age and HIV in the era of modern ART.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":" ","pages":"880-892"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140911058","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}