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Context: Medications may become inappropriate for patients in the last phase of life and may even compromise their quality of life., Objective: To find consensus on recommendations regarding deprescribing of medications for adult patients with a life expectancy of six months or less., Methods: Experts working in palliative care or other relevant disciplines were asked to participate in this international Delphi study. Existing tools for deprescribing of medication in the last phase of life were integrated in a list of 42 recommendations regarding potential deprescription of various medication types. In two Delphi rounds, experts were asked to rate their agreement with each recommendation on a 5-point Likert-scale (strongly agree-strongly disagree). Recommendations were accepted, if at least 70% of the experts (strongly) agreed, the interquartile range (IQR) was one or less, and less than 10% strongly disagreed., Results: About 47 experts from 10 countries participated (response rate 53%). In most cases (76%), consensus was reached on deprescribing recommendations for patients with a life expectancy of six months or less. The highest level of consensus was reached for recommendations on the deprescription of diuretics in case of decreasing fluid intake or increasing fluid loss, lipid modifying agents if prescribed for primary prevention, and vitamin K antagonists and direct oral anticoagulants in case of high bleeding risk., Conclusion: A high level of consensus was reached on recommendations on potential deprescription of several medications for patients with a life expectancy of six months or less., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Introduction: The topic of death and the dying is a crucial aspect of patient care, especially for individuals with terminal illnesses. However, discussions about death and dying are often avoided during patient interactions. In this article, our aim is to explore the reasons behind our fear of death and dying and to assess the importance of addressing these issues in shaping and cultivating relationships with our patients and in our personal lives. We argue that being open to impermanence is a valuable tool in our work with patients and their families and should be integrated into conversations with them. Furthermore, discussions about death and dying should play a central role in medical and nursing education as well as professional development., Competing Interests: Die Autorinnen und Autoren haben keine Interessenkonflikte im Zusammenhang mit diesem Artikel deklariert, (© 2024 Aerzteverlag medinfo AG.)

Objective: To help healthcare professionals (HCP) act with more confidence when communicating about approaching death, we sought to develop a communication model for HCP to facilitate conversations with dying patients and family caregivers (FC) in nonemergency situations., Methods: We used a four-phase integrative approach: (1) creation of a preliminary model based on a systematic literature review and expert knowledge, (2) review of the model draft by international palliative care experts, (3) review by key stakeholders, and (4) final appraisal by communication experts., Results: After the clinical recognition of dying, the communication model provides a structure and practical communication aids for navigating the conversation based on three phases. It describes the content and relational level as core dimensions of effective conversations about approaching death and highlights the importance of HCP self-awareness and self-care when caring for the dying., Conclusion: Based on systematic involvement of key stakeholders, the model supports clinicians navigating challenging conversations about approaching death with dying patients and their FC successfully and with more confidence., Innovation: This study expands the theoretical basis for communication about approaching death and offers a pragmatic model for educational interventions and clinical use., Competing Interests: Sissel Guttormsen reports financial support was provided by Swiss Cancer Research Foundation (KFS-4522-08-2018). If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2024 The Author(s).)

Background: To date, there is a lack of standardization and consensus on which outcomes are central to assess the care provided to patients in the last month of life. Therefore, we aimed to conduct a systematic review to identify relevant outcomes to inform the development of a core outcome set for the best care for the dying person., Methods: We conducted a systematic review of outcomes reported in the scientific literature about the care for the dying person in the last month of life. We searched for peer-reviewed studies published before February 2022 in four electronic databases. To categorise the outcomes, we employed the taxonomy developed by the "Core Outcome Measures in Effectiveness Trials" collaboration., Results: Out of the 2,933 articles retrieved, 619 were included for analyses. The majority of studies (71%) were retrospective and with data extracted from chart reviews (71%). We extracted 1,951 outcomes in total, from which, after deletion of repeated outcomes, we identified 256 unique ones. The most frequently assessed outcomes were those related to medication or therapeutic interventions and those to hospital/healthcare use. Outcomes related to psychosocial wellbeing were rarely assessed. The closer to death, the less frequently the outcomes were studied., Conclusions: Most outcomes were related to medical interventions or to hospital use. Only a few studies focused on other components of integrated care such as psychosocial aspects. It remains to be defined which of these outcomes are fundamental to achieve the best care for the dying.

Objective: The Surprise Question (SQ) is a prognostic screening tool used to identify patients with limited life expectancy. We assessed the SQ's performance predicting 1-year mortality among patients in ambulatory heart failure (HF) clinics. We determined that the SQ's performance changes according to sex and other demographic (age) and clinical characteristics, mainly left ventricular ejection fraction (LVEF) and the New York Heart Association (NYHA) functional classifications., Methods: We conducted a prospective cohort study in two HF clinics. To assess the performance of the SQ in predicting 1-year mortality, we calculated the sensitivity, specificity, positive and negative likelihood ratios, and the positive and negative predictive values. To illustrate if the results of the SQ changes the probability that a patient dies within 1 year, we created Fagan's nomograms. We report the results from the overall sample and for subgroups according to sex, age, LVEF and NYHA functional class., Results: We observed that the SQ showed a sensitivity of 85% identifying ambulatory patients with HF who are in the last year of life. We determined that the SQ's performance predicting 1-year mortality was similar among women and men. The SQ performed better for patients aged under 70 years, for patients with reduced or mildly reduced ejection fraction, and for patients NYHA class III/IV., Conclusions: We consider the tool an easy and fast first step to identify patients with HF who might benefit from an advance care planning discussion or a referral to palliative care due to limited life expectancy., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Early integration of palliative care into oncology care has shown positive effects on patient symptoms and quality of life. It may also reduce health care costs. However given the heterogeneity of settings and interventions and the lack of information on the minimally effective dose for influencing care utilisation and costs, it remains uncertain whether early palliative care reduces costs., Objectives: We sought to determine whether an early palliative care intervention integrated in usual oncology care in a Swiss hospital setting reduced utilisation and costs of health care in the last month of life when compared with usual oncology care alone., Methods: We performed a cost-consequences analysis alongside a multicentre trial. We extracted costs from administrative health insurance data and health care utilisation from family caregiver surveys to compare two study arms: usual oncology care and usual oncology care plus the palliative care intervention. The intervention consisted of a single-structured, multiprofessional conversation with the patient about symptoms, end-of-life decisions, network building and support for carers (SENS). The early palliative care intervention was performed within 16 weeks of the diagnosis of a tumour stage not amenable or responsive to curative treatment., Results: We included 58 participants with advanced cancer in our economic evaluation study. Median overall health care costs in the last month of life were 7892 Swiss Francs (CHF) (interquartile range: CHF 5637-13,489) in the intervention arm and CHF 8492 [CHF 5411-12,012] in the control arm. The average total intervention treatment cost CHF 380 per patient. Integrating an early palliative care intervention into usual oncology care showed no significant difference in health care utilisation or overall health care costs between intervention and control arms (p = 0.98)., Conclusion: Although early palliative care is often presented as a cost-reducing care service, we could not show a significant effect of the SENS intervention on health care utilisation and costs in the last month of life. However, it may be that the intervention was not intensive enough, the timeframe too short or the study population too small for measurable effects. Patients appreciated the intervention. Single-structured early palliative care interventions are easy to implement in clinical practice and present low treatment costs. Further research about the economic impact of early palliative care should focus on extracting large, detailed cost databases showing potential shifts in cost and cost-effectiveness., Clinical Trials: gov Identifier: NCT01983956.

Palliative sedation is defined as the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) to relieve the burden of otherwise intractable suffering in a manner ethically acceptable to the patient, their family, and healthcare providers. In Switzerland, the prevalence of continuous deep sedation until death increased from 4.7% in 2001 to 17.5% of all deceased in 2013, depending on the research method used and on regional variations. Yet, these numbers may be overestimated due to a lack of understanding of the term "continuous deep sedation" by for example respondents of the questionnaire-based study. Inadequately trained and inexperienced healthcare professionals may incorrectly or inappropriately perform palliative sedation due to uncertainties regarding its definitions and practice. Therefore, the expert members of the Bigorio group and the authors of this manuscript believe that national recommendations should be published and made available to healthcare professionals to provide practical, terminological, and ethical guidance. The Bigorio group is the working group of the Swiss Palliative Care Society whose task is to publish clinical recommendations at a national level in Switzerland. These recommendations aim to provide guidance on the most critical questions and issues related to palliative sedation. The Swiss Society of Palliative Care (palliative.ch) mandated a writing board comprising four clinical experts (three physicians and one ethicist) and two national academic experts to revise the 2005 Bigorio guidelines. A first draft was created based on a narrative literature review, which was internally reviewed by five academic institutions (Lausanne, Geneva, Bern, Zürich, and Basel) and the heads of all working groups of the Swiss Society of Palliative Care before finalising the guidelines. The following themes are discussed regarding palliative sedation: (a) definitions and clinical aspects, (b) the decision-making process, (c) communication with patients and families, (d) patient monitoring, (e) pharmacological approaches, and (f) ethical and controversial issues. Palliative sedation must be practised with clinical and ethical accuracy and competence to avoid harm and ethically questionable use. Specialist palliative care teams should be consulted before initiating palliative sedation to avoid overlooking other potential treatment options for the patient's symptoms and suffering.

Objectives: Although caring for dying patients and their family caregivers (FC) is integral to patient care, training in communication about approaching death is almost inexistent in medical and nursing curricula. Consequently, many health professionals have insufficient knowledge about conducting these conversations. In order to gain a broader insight into essential aspects of this communication from different perspectives, we conducted focus groups with key stakeholders., Methods: Medical specialists, nurses, medical students, bereaved FC and patient representatives participated in five focus groups ( n  = 30). Following a focus group schedule, we elicited relevant aspects of communication about approaching death, associated emotions, and appropriate communication frameworks. We analyzed data thematically., Results: Four main themes were central to conversations about approaching death: (1) embracing care within medical expertise, (2) preparing the conversation while remaining open to the unexpected, (3) recognizing and reflecting on own emotions and reactions, and (4) establishing a meaningful connection with others., Significance of Results: Communicating about approaching death with dying patients and their FC can be complex and challenging at a professional and personal level. With the recognition of the dying phase, a process is initiated for which health professionals need solid clinical knowledge about but also effective communication skills, constant self-reflection and self-care strategies. Comprehensive training and supervision while dealing with the challenges of communicating approaching death to dying patients and their FC are key, particularly for trainees, less experienced physicians and nurses. The essential components identified in this study can help health professionals to master these conversations.

Background: Communities and local governments invest in compassionate communities (CCs) a great deal of time, money, effort, and work. However, it is not known whether the CCs are having the effect they are expected to have, so the value of continuing with these initiatives is unknown, and there is a need for a model for evaluating CCs to solve the question., Objectives: To identify a set of core outcomes or benefits that should be measured to assess the impact of the CCs., Design: Multiple-methods study involving three communities, each in a different country (Argentina, Colombia, and Switzerland)., Methods and Analysis: To identifying the set of core outcomes, which is the first step in developing the CC evaluation model, five phases will follow: online meetings, literature review, fieldwork, Delphi survey, and social transfer. We will involve members of the local communities of Bern, Buenos Aires, and Medellin at three different levels: (1) citizens (e.g. patients, caregivers, and family members), (2) organizations and institutions involved in the program implementation (e.g. health care organizations, churches, non-governmental organizations, and schools), and (3) political and governmental sectors., Ethics: The study will be conducted following existing international regulations and guidance such as the Declaration of Helsinki. The ethics committee of Pallium Latin America and the ethics committee of the canton of Bern considered our application exempt from the need for approval. Ethics approval in Bern and Buenos Aires is in the process of being obtained. The ethics committee of the Pontifical Bolivarian University approved this protocol., Discussion: We expect that this project will help bridge the gap in knowledge regarding the measurable impact of the CCs and enhance more CC development., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s), 2023.)

Objective: To summarize the available literature on using machine learning (ML) for palliative care practice as well as research and to assess the adherence of the published studies to the most important ML best practices. Methods: The MEDLINE database was searched for the use of ML in palliative care practice or research, and the records were screened according to PRISMA guidelines. Results: In total, 22 publications using machine learning for mortality prediction (n = 15), data annotation (n = 5), predicting morbidity under palliative therapy (n = 1), and predicting response to palliative therapy (n = 1) were included. Publications used a variety of supervised or unsupervised models, but mostly tree-based classifiers and neural networks. Two publications had code uploaded to a public repository, and one publication uploaded the dataset. Conclusions: Machine learning in palliative care is mainly used to predict mortality. Similarly to other applications of ML, external test sets and prospective validations are the exception.

Objective: To assess the impact of COVID-19 on the palliative care (PC) publication trend in the last 10 years and the collaboration between countries and main topics that were discussed in the papers., Methods: We used Scopus to identify publications on PC between 2012 and 2021 and publications about PC and COVID-19 between 2020 and 2021. We used VOSviewer to assess the main topics using the keywords from the papers and to assess country collaboration., Results: 1937 publications resulted. An increase in publications about PC was observed during the pandemic, only partially explained by OVID-19-related publications. Cancer-related PC publications were the ones with the most marked increase. We identified six clusters in the distribution of the keywords: bioethics, cancer, nursing home/telemedicine, public health, caring and PC following the WHO definition. The countries with higher number of publications were the United States and England., Conclusion: We showed an increase in the number of PC publications in the last 2 years that was only partially explained by COVID-19-related publications. Most of the publications increase was due to cancer-related publications, since, during the time of the pandemic, publications on cancer and PC increased markedly, while those on heart failure, lung disease and dementia, remained constant., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: There are increasing calls to establish heart failure (HF) clinics due to their effectiveness in the interdisciplinary management of people living with HF. However, although a recommendation exists for palliative care (PC) providers to be part of the interdisciplinary team, few of the established HF clinics include them in their teams. Therefore, in this qualitative study, we aimed to understand the unmet PC needs of patients with HF attending an already established HF clinic., Methods: Secondary qualitative analysis of structured interviews undertaken within a larger study to validate the German version of the Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF). The NAT: PD-HF is a tool that aims to assess unmet needs in patients with HF. The interviews took place between January and March 2020 with patients from the ambulatory HF Clinic of a University Hospital in Switzerland. For this analysis, we transcribed and thematically analyzed the longest and most content-rich interviews until we reached data saturation at 31 participants. The interviews lasted 31 min on average (24-48 min)., Results: Participants ( n = 31) had a median age of 64 years (IQR 56-77), the majority had reduced ejection fraction, were men, and were classified as having a New York Heart Association functional class II. Participants were in general satisfied with the treatment and information received at the HF clinic. However, they reported several unmet needs. We therefore identified three ambivalences as main themes: (I) "feeling well-informed but missing essential discussions", (II) "although feeling mostly satisfied with the care, remaining with unmet care needs", and (III) "fearing a referral to palliative care but acknowledging its importance"., Conclusion: Although patients who are receiving multidisciplinary management in ambulatory HF clinics are generally satisfied with the care received, they remain with unmet needs. These unmet needs, such as the need for advance care planning or the need for timely and tactful end-of-life discussions, can be fulfilled by PC providers. Including personnel trained in PC as part of the multidisciplinary team could help to address patients' needs, thus improving the quality of care and the quality of life of people living with HF., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Gonzalez-Jaramillo, Maessen, Luethi, Guyer, Hunziker, Eychmüller and Zambrano.)

Background: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent., Aim: To determine the consistency with which the Surprise Question is used., Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]-100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213., Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes., Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries ( p  = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries ( p  = 0.53)., Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted.

Background: Few hospitals and heart failure (HF) clinics offer concurrent palliative care (PC) together with life-prolonging therapies. To know the prevalence of patients in HF clinics needing PC and useful tools to recognize them are the first steps to extending PC in those settings. However, it is still unknown whether tools commonly used to identify patients with HF needing PC can correctly distinguish them. Two systematic reviews found that the NECesidades PALiativas (NECPAL) tool was one of the two most commonly used tools to asses PC needs in HF patients. Therefore, we assessed 1) the prevalence of PC needs in HF clinics according to the NECPAL tool, and 2) the characteristics of the patients identified as having PC; mainly, their quality of life (QoL), symptom burden, and psychosocial problems., Methods: This cross-sectional study was conducted at two HF clinics in Colombia. We assessed the prevalence of PC in the overall sample and in subgroups according to clinical and demographic variables. We assessed QoL, symptom burden, and psychosocial problems using the 12-Item Short-Form Health Survey (SF-12), the Kansas City Cardiomyopathy Questionnaire (KCCQ) and the Edmonton Symptom Assessment System (ESAS). We compared the results of these tools between patients identified as having PC needs (+NECPAL) and patients identified as not having PC needs (-NECPAL)., Results: Among the 178 patients, 78 (44%) had PC needs. The prevalence of PC needs was twice as nigh in patients NYHA III/IV as in patients NYHA I/II and almost twice as high in patients older than 70 years as in patients younger than 70 years. Compared to -NECPAL patients, +NECPAL patients had worse QoL, more severe shortness of breath, tiredness, drowsiness, and pain, and more psychosocial problems., Conclusion: The prevalence of PC needs in outpatient HF clinics is high and is even higher in older patients and in patients at more advanced NYHA stages. Compared to patients identified as not having PC needs, patients identified as having PC needs have worse QoL, more severe symptoms, and greater psychosocial problems. Including a PC provider in the multidisciplinary team of HF clinics may help to assess and cover these needs., (© 2021. The Author(s).)

Compassionate Cities: Strengthening Social Resources in Communities for Mutual Support at the End of Life Abstract. People at the end of life often wish to remain at home for as long as possible. To make this possible to a greater extent, not only health professionals who accompany those affected and their relatives are needed, but also educational programmes to strengthen health literacy at the end of life. Within the framework of the project "Compassionate City Lab of the Bernese People", experiences in dealing with the end of life were collected and published, and a course on advance care planning for elderly people was developed. The project is funded by Health Promotion Switzerland and supported by a partnership between Bernese institutions of higher education, specialised palliative care and primary care, the community, and volunteers in the city of Bern and the Bernese Oberland.

Telemedicine in Palliative Care: Digital Communication in a Relationship-Based Speciality - Does It Make Sense? Abstract. Telemedicine in palliative care is established especially in countries with large geographical distances. Digital forms of communication (virtual consultations) are most frequently used and well-accepted by patients and caregivers. The main benefit lies in the reduction of the access barrier in the outpatient setting. Advantages are stress reduction for patients (travel, accessibility) and reduction in the care burden for relatives. Additional benefits compared to the physical visit for symptom-control, quality of life and costs are unclear. Risks are influenced by the lack of physical interaction and data security. To what extent telepalliative care makes sense in a high-density health system is difficult to predict. It is therefore important to use these new tools in a carefully adapted and scientifically verified way.

Communicating Prognosis and Expectations in Advanced Disease - A Balancing Act in Practice Abstract. To prepare the end of life, to plan important things, to spend the remaining time of life not only with medical treatments, but to live - these are frequently expressed wishes of people with progressive diseases. Prognostic statements are feared by professionals. At the same time, when talking about what lies ahead for those affected, professionals very often make over-optimistic promises. A broader definition of the term prognosis as well as a careful handling of expectations can help to define realistic goals together.