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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.

Background Caring for dying patients is an integral aspect of care, however medical and nursing students lack training and exposure to conversations with dying patients and their families. Thus, many health professionals lack the skills to communicate about imminent death causing a long-lasting impact to all involved. As a basis to develop an educational module, this study aimed at identifying aspects that are essential to conversations about imminent death from the perspective of key stakeholders. Methods Five focus groups were conducted with medical specialists, nurses, medical students, patient representatives, and bereaved relatives (n=30). Based on a semi-structured guide, relevant verbal and nonverbal aspects of conversations about imminent death, associated emotions, and appropriate frameworks for communication were elicited. All conversations were recorded and thematically analyzed. Findings Based on participants’ experiences four main themes were identified as essential to conversations about imminent 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. Discussion The Findings: indicate that communicating about imminent death with dying patients and their family members is a complex and challenging task for health professionals at a professional as well as personal level. Hence, comprehensive training is needed in order to impart clinical and interpersonal skills that support health professionals to recognize when and how to engage in these conversations. Furthermore, self-reflection processes and self-care practices are to be taught and encouraged to promote positive coping strategies in the long term. Guidance and supervision are also essential to support debriefing practices in order to revisit confronting experiences, as well as to consolidate and optimize what has been learned.

BACKGROUND Quality in health care is a complex framework with many components. The word "quality" is used in different official settings and different contexts (public health, certification, patient safety). On individual and team levels, the perception of quality is heterogenous, and the term is often used beyond the theoretical framework. Therefore, it remains a challenge to describe the perceived quality of care in the clinical setting. The aim of this paper is to present a simple concept that can be used to visually define the perceived quality of care for the individual health care professional. METHODS/CONCEPT An experience-based concept that uses different levels of "quality of care" individually to guide the supervision of health care professionals (residents) and quality goal setting in teams is presented, with the assumption that the ambition of any health care professional is to provide excellence in care. Three perceived levels of quality of care are defined, described, and visualized, namely, a) security, b) comfort, and c) perfection. The "comfort level" defines a sustainable level of care where the optimal balance between good patient care and resource use is achieved. Excellence of care is located between the comfort and the perfection level. The practical application of this proposed concept is described in three settings, namely, 1) the threshold for asking advice from the supervisor (resident physicians), 2) in supervision/coaching discussions between residents and supervisors, and 3) in the analysis of perceived quality of care and goals setting within the team. CONCLUSION A simplified, purpose-built but well-defined concept to visually depict the perception of quality of care by clinicians can be useful in clinical practice, for the supervision of residents and for team dynamics.

CONTEXT Although the number of studies on the economic impact of palliative care (PC) is growing, the great majority report costs from North America. OBJECTIVES We aimed to provide a comprehensive overview of PC hospital cost components from the perspective of a European mixed funded health care system by identifying cost drivers of PC and quantifying their effect on hospital costs compared to usual care (UC). METHODS We performed a retrospective, observational analysis examining cost data from the last hospitalization of patients who died at a large academic hospital in Switzerland comparing patients receiving PC versus UC. RESULTS Total hospital costs were similar in PC and UC with a mean difference of CHF -2'777 [95% confidence interval (CI) -12'713 to 8'506, p=0.60]. Average costs per day decreased by CHF -3'224 [95% CI -3'811 to -2'631, p

Hintergrund: Wegen sich verändernder Strukturen im Spitalbereich sowie im Bereich der Hausarztabdeckung als auch infolge zunehmenden Drucks auf das Gesundheitssystem kommen mehr Patienten auf die Notfallstationen, die aufgrund ihrer Grunderkrankung und des fortgeschrittenen Krankheitsstadiums von einem palliativen Behandlungskonzept profitieren. Eine wesentliche Herausforderung ist hierbei bereits die Definition von «Palliative Care» (PC), sowie die Klärung, was genau die palliative Versorgung beinhaltet. Häufig vermischt wird der Terminus «Palliative Care» mit «End of life care». Die vorliegende Studie ist eine Standortbestimmung im Universitären Notfallzentrum des Inselspitals Bern (UNZ), das jährlich rund 32 400 Patienten versorgt. Ziel ist es, mehr über den Wissensstand und die persönliche Einstellung der Mitarbeiter zu palliativen Fragestellungen und speziell zum Begriff «Palliative Care» zu erhalten. Methodik: Die Mitarbeiter des Universitären Notfallzentrums des Inselspitals Bern (UNZ) wurden mittels einer Online-Umfrage durch eine spitalexterne Fachinstitution interviewt. Diese Befragung basiert auf einem Instrument [1], das in einer vergleichbaren Studie auf einer Notfallstation in den USA entwickelt und validiert wurde. Resultate: Von 154 Mitarbeitenden (Pflege und Ärzte) füllten 60 Mitarbeitende die Befragung vollständig aus, entsprechend einer Antwortrate von 39%. Die Definition von Palliative Care (von n=60) war sehr heterogen und konnte in sechs Themenbereiche eingeteilt werden. Bei den Fragen nach spezifischen Leistungsangeboten äusserten die Mitarbeitenden den Wunsch nach einem erleichterten Zugang zu bestehenden Patientendaten, nach einem 24-Stunden-Palliative-Care-Konsiliardienst und nach mehr Besprechungszeit für Fragestellungen der PC im klinischen Alltag. Schlussfolgerungen: Die heterogene Begriffsdefinition von «Palliative Care» bestätigt sich. Es besteht kein klares Vorgehen, und zudem lässt sich ein Zeitmangel für ausführliche Patientengespräche in palliativen Situationen im UNZ feststellen. Der Patientenwunsch oder Patientenverfügungen mit DNR/DNI-Prozedere stehen nicht im Widerspruch zu den persönlichen Wertvorstellungen der meisten Mitarbeitenden. Die 24-Stunden-Verfügbarkeit eines spezialisierten PC-Teams, das Erarbeiten von Guidelines und vermehrtes Training für PC würde von den UNZ-Mitarbeitenden begrüsst., Background: As the demand for palliative care (PC) in emergency wards continues to increase, emergency medicine is increasingly focusing on the care of extremely ill patients with incurable, chronic and/or advanced diseases. There is no consistent definition of the profile of PC or understanding of what PC involves. The mistake is often made of confusing PC with end-of-life or terminal care. The present study was intended to assess the situation at the Department of Emergency Medicine, Inselspital, Bern University Hospital (UNZ), which cares for about 32 400 patients annually. The plan was to find out how much staff members knew about PC and to survey their personal attitudes. Methods: The employees of the UNZ were surveyed with an online questionnaire by a special institution outside the hospital. This is based on an instrument [1] developed in a comparative study in an emergency ward in the USA and used for physicians. Results: 60 of 154 staff members (physicians and nurses) completed the questionnaire, corresponding to a response rate of 39%. The definition of palliative care (n=60) was very mixed and could be classified into 6 areas. In response to questions about specific services, the staff members mentioned that their access to existing patient data should be facilitated. They also expressed the wish for a 24 h palliative consultation service and thought that, during normal working days, more time should be allotted to discussing issues related to palliative care. Conclusions: It has been confirmed that the definition of palliative care is not consistent. Within the UNZ, there is no clear procedure, but lack of time for detailed discussions with patients needing palliative care. Patient wishes or living wills with the DNR/DNI procedure do not contradict the personal ethics of most staff members. UNZ staff members would welcome the 24 h availability of a specialized PC team, as well as the development of guidelines and increased training in PC.

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. Supplementary Information The online version contains supplementary material available at 10.1186/s12904-021-00850-y.

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.

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.

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. Supplementary Information The online version contains supplementary material available at 10.1186/s12955-021-01817-6.

BACKGROUND Use of implantable cardioverter defibrillators is increasingly common. As patients approach the end of life, it is appropriate to deactivate the shock function. AIM To assess the prevalence of implantable cardioverter defibrillator reprogramming to deactivate the shock function at the end of life and the prevalence of advance directives among this population. DESIGN Following a previously established protocol available in PROSPERO, we performed a narrative synthesis of our findings and used the logit transformation method to perform our quantitative synthesis. DATA SOURCES We searched seven bibliographic databases (Embase, Cochrane Central register of controlled Trials, Medline-Ovid, Web-of-Science, Scopus, PsychInfo, and CINAHL) and additional sources until April 2019. RESULTS Of the references we identified, 14 were included. We found a pooled prevalence of implantable cardioverter defibrillator reprogramming at the end of life of 28% (95% confidence interval, 22%-36%) with higher reprogramming rates after the recommendations for managing the device at the end of life were published. Among patients with advance directives, the pooled prevalence of advance directives that explicitly mentioned the device was 1% (95% confidence interval, 1%-3%). CONCLUSIONS The prevalence of implantable cardioverter defibrillator reprogramming and advance directives that explicitly mentioned the device was very low. Study data suggested reprogramming decisions were made very late, after the patient experienced multiple shocks. Patient suffering could be ameliorated if physicians and other healthcare professionals adhere to clinical guidelines for the good management of the device at the end of life and include deactivating the shock function in the discussion that leads to the advance directive.

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.

Background: People living with heart failure (HF) have a wide range of physical and psychological symptoms and comorbidities. These affect their quality of life throughout the HF trajectory. Therefore, patients with HF, especially in advanced stages of this disease, may benefit from palliative care (PC). However, despite PC being widely recommended, few hospitals and HF clinics offer concurrent PC along with life���prolonging therapies. Due to the unpredictability of the HF disease trajectory, prognostication is challenging, as well as identifying patients who might benefit from PC or have unmet needs. Additionally, patients with HF and implantable cardioverter efibrillators (ICD) have specific end���of���life (EoL) device management needs. Aims: In this thesis, I contribute knowledge about the challenges and gaps in the delivery of PC to patients with HF. Through the 4 articles that form my thesis, I provide knowledge about the challenges of identifying patients who might benefit from PC or those who have unmet PC needs. I evaluate the performance of the surprise question (SQ) predicting 1���year mortality in ambulatory HF clinics, in article 1. In article 2, I assess the prevalence of patients with PC needs in outpatient HF clinics with the NECesidades PALiativas (NECPAL) or Palliative Needs tool. Additionally, I use the NECPAL tool to identify patients with HF who might benefit from PC. For article 3, I evaluated the psychometric characteristics of the German Needs Assessment Tool: Progressive Disease ��� Heart Failure (NAT: PD���HF). Finally, I quantify gaps from anticipatory care planning and EoL care of patients with ICD in article 4. Methods: I used a cohort of 178 patients from 2 ambulatory HF clinics in Colombia for articles 1 and 2. To assess the performance of the SQ to predict 1���year mortality (article 1), I consulted Colombia���s national mortality register for participants��� 1���year vital status. To assess the NECPAL tool���s identification of patients with HF who might benefit from PC (article 2), I conducted a cross���sectional analysis that compared health���related quality of life and physical and psychosocial problems, between patients needing (+NECPAL group) and not needing (���NECPAL group) PC. To validate the German NAT: PD���HF, I used a singlecenter study at Inselspital���s Heart Failure Clinic in Bern, Switzerland (article 3). The tool was translated from English into German using a forward���backward translation. I assessed the German NAT: PD���HF���s psychometric characteristics, including internal onsistency, inter���rater reliability, test���retest reliability, and face validity. I conducted a systematic review and meta���analysis for article 4. Results: These studies��� results are presented in 4 articles. Article 1 shows the SQ���s sensitivity to predict 1���year mortality is 85% and its specificity is 57%. The SQ���s positive and negative likelihood ratios were 1.98 and 0.26, respectively. Its performance was similar among women and men, yet performed better in patients younger than 70 years, in patients with reduced or mildly reduced ejection fraction, and in patients at the New York Heart Association class III or IV. Article 2 shows that among patients under optimal medical 8 treatment in outpatient HF clinics, 44% met the NECPAL tool criteria to receive concurrent PC (+NECPAL). Compared to ���NECPAL patients, +NECPAL patients had worse quality of life; more severe shortness of breath, tiredness, drowsiness, and pain; and greater psychosocial problems. Article 3 shows that the German NAT: PD���HF validation had good internal consistency, substantial inter���rater agreement for most of the items, and an almost perfect test���retest reliability. Moreover, patients thought well of the tool, and they agreed that it could help to improve their quality of care. Article 4 shows that nearly 3 out of 4 patients (pooled estimate 28%, 95% CI 22���36%) died with their ICD���s shock function active, despite guidelines recommending deactivation of this function at the EoL. For those with advance directives, few directives mentioned what to do with ICD devices at the EoL; the pooled prevalence estimate was only 1% (95% CI 1���3%). Conclusion: In this thesis, I contribute knowledge about gaps and challenges delivering palliative care to patients with heart failure. I show gaps regarding anticipatory care planning and end���of���life care for patients with implantable cardioverter defibrillators and offer strategies to address these gaps. Additionally, I provide knowledge and suggestions to overcome identifying patients��� palliative care needs. I assessed 3 tools to support the identification of palliative care needs; 2 of them, to support the identification of the needs due to limited life expectancy (the SQ and the NECPAL), and 1 to identify palliative care needs regardless of prognosis (the NAT: PD���HF). The best screening tool depends on the situation, and whatever tool we use, it is better to screen and think about the palliative care needs of the patients using any tool than no screening at all.

Background The Surprise Question (SQ) “would I be surprised if this patient were to die in the next 12 months?” has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question (“Would I be surprised if the patient were still alive after 12 months?”) alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions. Methods An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance – 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A “surprise threshold” for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance. Discussion This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice. Trial registration Clinicaltrials.gov NCT03697213 (05/10/2018). Prospectively registered. Electronic supplementary material The online version of this article (10.1186/s12904-019-0413-x) contains supplementary material, which is available to authorized users.