An economic evaluation of an early palliative care intervention among patients with advanced cancer.

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 - revised recommendations.

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.

Outcomes of care during the last month of life: a systematic review to inform the development of a core outcome set.

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.

Talking about dying and death: Essentials of communicating about approaching death from the perspective of major stakeholders.

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.

Compassionate communities: How to assess their benefit? A protocol of a collaborative study between different countries.

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.

Applications of Machine Learning in Palliative Care: A Systematic Review.

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.

Palliative care and COVID-19: a bibliometric analysis.

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.

Unmet Needs in Patients With Heart Failure: The Importance of Palliative Care in a Heart Failure Clinic.

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.

An online international comparison of palliative care identification in primary care using the Surprise Question.

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.

Prevalence and characteristics of patients with heart failure needing palliative care.

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.

[Compassionate Cities: Strengthening Social Resources in Communities for Mutual Support at the End of Life]. / Compassionate Cities: Stärkung der sozialen Ressourcen in den Gemeinden für ein gemeinsam getragenes Lebensende.

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?] / Telemedizin in der Palliative Care: Digitale Kommunikation in einem beziehungsbasierten Fachgebiet ­ ist das sinnvoll?

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]. / Kommunikation von Prognose und Erwartungen bei fortgeschrittenen Erkrankungen ­ eine Gratwanderung in der Praxis.

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.

Validation of the German version of the needs assessment tool: progressive disease-heart failure.

BACKGROUND: The Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF) is a tool created to assess the needs of people living with heart failure and their informal caregivers to assist delivering care in a more comprehensive way that addresses actual needs that are unmet, and to improve quality of life. In this study, we aimed to (1) Translate the tool into German and culturally adapt it. (2) Assess internal consistency, inter-rater reliability, and test-retest reliability of the German NAT: PD-HF. (3) Evaluate whether and how patients and health care personnel understand the tool and its utility. (4) Assess the tool's face validity, applicability, relevance, and acceptability among health care personnel. METHODS: Single-center validation study. The tool was translated from English into German using a forward-backward translation. To assess internal consistency, we used Cronbach´s alpha. To assess inter-rater reliability and test-retest reliability, we used Cohen´s kappa, and to assess validity we used face validity. RESULTS: The translated tool showed good internal consistency. Raters were in substantial agreement on a majority of the questions, and agreement was almost perfect for all the questions in the test-retest analysis. Face validity was rated high by health care personnel. CONCLUSION: The German NAT: PD-HF is a reliable, valid, and internally consistent tool that is well accepted by both patients and health care personnel. However, it is important to keep in mind that effective use of the tool requires training of health care personnel.

The 'Surprise question' in heart failure: a prospective cohort study.

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.

Single early palliative care intervention added to usual oncology care for patients with advanced cancer: A randomized controlled trial (SENS Trial).

BACKGROUND: International oncology societies recommend early palliative care. Specific models to integrate early palliative care efficiently into clinical practice are debated. The authors designed a study to look at the quantitative and qualitative outcomes of an early palliative care intervention in oncological care to decrease stress and improve quality of life. AIMS: To compare a single structured early palliative care intervention added to a usual oncology care in terms of distress and health-related quality of life at baseline compared to 6 months after enrollment. DESIGN: This multicenter randomized controlled trial (NCT01983956) enrolled adult patients with advanced cancer. Participants were either randomly assigned to usual oncology care alone or usual care plus a structured early palliative care intervention. SETTING/PARTICIPANTS: One hundred fifty adult patients with a variety of advanced cancer diagnoses were randomized. Seventy-four participants were in the intervention and 76 participants in the control group. The primary outcome was the change in patient distress assessed by the National Comprehensive Cancer Network distress thermometer at 6 months. Health-related quality of life, the secondary outcome, was assessed by the Functional Assessment of Cancer Therapy-General Questionnaire. RESULTS: The results showed no significant effect of the early palliative care intervention neither on patient distress nor on health-related quality of life. CONCLUSION: The addition of an early intervention to usual care for patients with advanced cancer did not improve distress or quality of life. Thus, patients may need more intensive early palliative care with continuous professional support to identify and address their palliative needs early.

Early palliative care integration trial: consultation content and interaction dynamics.

OBJECTIVES: Evidence for the positive impact of the early integration of palliative care (EPC) continues to grow. Less is known about how EPC improves patient and family outcomes, including the content of EPC consultations. Therefore, we aimed to better understand the content of EPC consultations including areas addressed, percentage covered per area and interaction style. METHODS: As part of a trial in which EPC in addition to oncology care was compared with oncology care alone, we audio recorded 10 interventions. The palliative care team led the interventions using SENS, a conversation structure, which stands for: Symptoms, End-of-life decision-making, Network and Support. We employed two approaches to analysis: the Roter interaction analysis system (RIAS) to analyse interaction dynamics and SENS as a framework for content analysis. RESULTS: Physician-patient communication covered 91% of the interaction. According to RIAS, the consultations were evenly dominated between physicians and patients (ratio=1.04) and highly patient-centred (ratio=1.26). Content wise, rapport was the largest category covering 27% of the consultation, followed by decision-making (21%) and by symptom assessment/management (17%) including 8.1% for physical symptoms and 5.4% for psychosocial aspects. Network discussions covered 17%, and lastly, support for the family 7%. CONCLUSIONS: EPC consultations cover a variety of end-of-life topics while putting a high value in establishing rapport, developing a relationship with patients, and on providing reassurance and positive emotional talk. EPC consultations using predefined structures may guarantee that a minimum of important aspects are addressed in a way in which the relationship with the patient remains at the centre.

Impact of home-based palliative care on health care costs and hospital use: A systematic review.

OBJECTIVE: To assess the effectiveness of home-based palliative care (HBPC) on reducing hospital visits and whether HBPC lowered health care cost. METHOD: We searched six bibliographic databases (Embase (Ovid); Cochrane Central Register of Controlled Trials; Medline (Ovid); PubMed; Web of Science Core Collection; and, CINAHL) until February 2019 and performed a narrative synthesis of our findings. RESULTS: Of the 1,426 identified references, 21 articles based on 19 unique studies met our inclusion criteria, which involved 92,000 participants. In both oncological and non-oncological patients, HBPC consistently reduced the number of hospital visits and their length, as well as hospitalization costs and overall health care costs. Even though home-treated patients consumed more outpatient resources, a higher saving in the hospital costs counterbalanced this. The reduction in overall health care costs was most noticeable for study periods closer to death, with greater reductions in the last 2 months, last month, and last two weeks of life. SIGNIFICANCE OF RESULTS: Stakeholders should recognize HBPC as an intervention that decreases patient care costs at end of life and therefore health care providers should assess the preferences of patients nearing the end-of-life to identify those who will benefit most from HBPC.