Shared decision making and advance care planning: a systematic literature review and novel decision-making model.

BACKGROUND AND AIMS: Shared decision making (SDM) and advance care planning (ACP) are important evidence and ethics based concepts that can be translated in communication tools to aid the treatment decision-making process. Although both have been recommended in the care of patients with risks of complications, they have not yet been described as two components of one single process. In this paper we aim to (1) assess how SDM and ACP is being applied, choosing patients with aortic stenosis with high and moderate treatment complication risks such as bleeding or stroke as an example, and (2) propose a model to best combine the two concepts and integrate them in the care process. METHODS: In order to assess how SDM and ACP is applied in usual care, we have performed a systematic literature review. The included studies have been analysed by means of thematic analysis as well as abductive reasoning to determine which SDM and ACP steps are applied as well as to propose a model of combining the two concepts into one process. RESULTS: The search in Medline, Cinahl, Embase, Scopus, Web of science, Psychinfo and Cochrane revealed 15 studies. Eleven describe various steps of SDM while four studies discuss the documentation of goals of care. Based on the review results and existing evidence we propose a model that combines SDM and ACP in one process for a complete patient informed choice. CONCLUSION: To be able to make informed choices about immediate and future care, patients should be engaged in both SDM and ACP decision-making processes. This allows for an iterative process in which each important decision-maker can share their expertise and concerns regarding the care planning and advance care planning. This would help to better structure and prioritize information while creating a trustful and respectful relationship between the participants. PROSPERO 2019. CRD42019124575.

Blacklisting Health Insurance Premium Defaulters: Is Denial of Medical Care Ethically Justifiable?

Rising health insurance costs and the cost of living crisis are likely leading to an increase in unpaid health insurance bills in many countries. In Switzerland, a particularly drastic measure to sanction defaulting insurance payers is employed. Since 2012, Swiss cantons - who have to cover most of the bills of defaulting payers - are allowed by federal law to blacklist them and to restrict their access to medical care to emergencies.In our paper, we briefly describe blacklisting in the context of the Swiss healthcare system before we examine the ethical issues involved in light of what is known about its social and health impacts. We found no evidence that blacklisting serves as an effective way of recovering unpaid health insurance contributions or of strengthening solidarity within the health insurance system. Furthermore, the ambiguous definitions of what constitutes an emergency treatment and the incompatibility of the denial of medical care with the obligation to provide professional assistance complicate the implementation of blacklists and expose care providers to enormous pressure.Therefore, we conclude that blacklists and the (partial) denial of medical care not only pose profound ethical problems but are also unsuitable for fulfilling the purpose for which they were introduced.

Key Factors in Decision Making for ECLS: A Binational Factorial Survey.

BACKGROUND: Extracorporeal life support (ECLS) provides support to patients with cardiopulmonary failure refractory to conventional therapy. While ECLS is potentially life-saving, it is associated with severe complications; decision making to initiate ECLS must, therefore, carefully consider which patients ECLS potentially benefits despite its consequences. OBJECTIVE: To answer 2 questions: First, which medically relevant patient factors influence decisions to initiate ECLS? Second, what are factors relevant to decisions to withdraw a running ECLS treatment? METHODS: We conducted a factorial survey among 420 physicians from 111 hospitals in Switzerland and Germany. The study included 2 scenarios: 1 explored willingness to initiate ECLS, and 1 explored willingness to withdraw a running ECLS treatment. Each participant responded to 5 different vignettes for each scenario. Vignettes were analyzed using mixed-effects regression models with random intercepts. RESULTS: Factors in the vignettes such as patients' age, treatment costs, therapeutic goal, comorbidities, and neurological outcome significantly influenced the decision to initiate ECLS. When it came to the decision to withdraw ECLS, patients' age, days on ECLS, criteria for discontinuation, condition of the patient, comorbidities, and neurological outcome were significant factors. In both scenarios, patients' age and neurological outcome were the most influential factors. CONCLUSIONS: This study provided insights into physicians' decision making processes about ECLS initiation and withdrawal. Patients' age and neurological status were the strongest factors influencing decisions regarding initiation of ECLS as well as for ECLS withdrawal. The findings may contribute to a more refined understanding of complex decision making for ECLS.

Indications and contraindications for extracorporeal life support for severe heart or lung failure: a systematic review.

INTRODUCTION: The effectiveness of extracorporeal life support (ECLS) in critically ill patients remains unclear despite a substantial increase in its use. This study critically assesses existing ECLS guidelines, consensus statements, and position papers to systematically review them for agreements and differences regarding indications and contraindications for ECLS. EVIDENCE ACQUISITION: The aims of this review were to identify available indications and contraindications for ECLS and to evaluate the quality of the evidence on which they are based. Documents containing recommendations regarding indications and/or contraindications for ECLS in adults (aged 18+) were identified through Medline, EMBASE, and CENTRAL searches. Additional documents were identified from guideline-specific databases and the internet websites of professional societies. Based on the Appraisal of Guidelines for Research and Evaluation (AGREE II), four independent reviewers assessed the rigor of development and quality of the documents. EVIDENCE SYNTHESIS: Eleven documents met the inclusion criteria. Three documents received an average score of ≥50% in all domains. However, the Editorial independence domain only scored <50% in most of the documents. Overall, 13 cardiac and 13 pulmonary ECLS indications, and 23 cardiac and 14 pulmonary contraindications were identified. Indications and contraindications for ECLS use are variable across the documents included and leave considerable room for interpretation. CONCLUSIONS: The documents included for review show considerable variability, with little consensus on indications and contraindications. This lack of consensus may reflect a lack of clarity regarding ECLS utility. Additionally, it may reveal the necessity for individualized, patient-dependent criteria supported by the best evidence available.

Risks and Benefits of Web-Based Patient Narratives: Systematic Review.

BACKGROUND: Patient narratives are illustrative, individual accounts of patients' experiences with certain health conditions. Web-based patient narratives have become widely available on the internet and in social media, as part of electronically available patient decision aids or Web-based databases. In recent years, the role of patient narratives as a source of information, insight, and support for both health care users and providers has increasingly been emphasized. Although the potential impact of patient stories has high immediate plausibility, it is of interest to know if this impact can be captured in quantitative studies. OBJECTIVE: This review aimed to evaluate whether research-generated Web-based patient narratives have quantifiable risks or benefits for (potential) patients, relatives, or health care professionals. METHODS: We searched the following databases from August 2017 to March 2019: Medical Literature Analysis and Retrieval System Online, PsycInfo, Sociological Abstracts, Web of Science, and EMBASE. Titles and abstracts of the retrieved studies were reviewed and assessed for the inclusion and exclusion criteria. Papers were included if they studied the following: (1) (potential) patients, relatives, or health care professionals; (2) the effects of Web-based patient narratives that were generated scientifically (eg, through qualitative research methods); and (3) were quantitative studies. Furthermore, 2 authors independently performed an assessment of the quality of the included studies using a validated checklist. RESULTS: Of 4226 documents, 17 studies met the inclusion criteria. The studies investigated 10 different sources of Web-based patient narratives. Sample sizes ranged from 23 to 2458. The mean score of the quality assessment was 82.6 (range 61-100). Effects regarding five different purposes were identified as follows: provide information, engage, model behavior, persuade, and comfort. We found positive effects in every category and negative effects in one category (persuade). Several of the reported effects are rather small or were identified under specific experimental conditions. CONCLUSIONS: Patient narratives seem to be a promising means to support users in improving their understanding of certain health conditions and possibly to provide emotional support and have an impact on behavioral changes. There is limited evidence for beneficial effects on some outcomes. However, narratives are characterized by considerable heterogeneity and the investigated outcomes are hardly comparable with each other, which makes the overall judgment difficult. As there are numerous possible measures and purposes of narratives, quantifying the impact of Web-based patient narratives remains a challenge. Future research is needed to define the optimal standards for quantitative approaches to narrative-based interventions.

Questioning the Questionnaire: Methodological Challenges in Measuring Subjective Quality of Life in Nursing Homes Using Cognitive Interviewing Techniques.

Although the concept of subjective quality of life in the nursing home setting is seen as a promising approach to discovering opportunities for improvement from the resident's perspective, it appears problematic in classical surveys that self-reported quality ratings on the basis of satisfaction questions tend to turn out overly positive. The aim of this article is to analyze how people in residential care facilities interpret and process response stimuli received from a questionnaire on subjective quality of life. In this analysis, we aim to gain methodological insights into the way a survey instrument on subjective quality of life can adequately represent individual ratings, as well as expectations regarding different aspects of quality of life. To test the feasibility of the proposed approach, we employed a range of probing techniques from the cognitive interviewing approach. The result is a promising design principle for constructing survey instruments to measure subjective quality of life.

Caring for Migrants and Refugees With End-Stage Kidney Disease in Europe.

With the number of migrants and refugees increasing globally, the nephrology community is increasingly confronted with issues relating to the management of end-stage kidney disease in this population, including medical, logistical, financial, and moral-ethical questions. Beginning with data for the state of affairs regarding refugees in Europe and grounded in moral reasoning theory, this Policy Forum Perspective contends that to improve care for this specific population, there is a need for: (1) clear demarcations of responsibilities across the societal (macro), local (meso), and individual (micro) levels, such that individual providers are aware of available resources and able to provide essential medical care while societies and local communities determine the general approach to dialysis care for refugees; (2) additional data and evidence to facilitate decision making based on facts rather than emotions; and (3) better information and education in a broad sense (cultural sensitivity, legal rights and obligations, and medical knowledge) to address specific needs in this population. Although the nephrology community cannot leverage a change in the geopolitical framework, we are in a position to generate accurate data describing the dimensions of care of refugee or migrant patients with end-stage kidney disease to advocate for a holistic approach to treatment for this unique patient population.

Do attitudes and behavior of health care professionals exacerbate health care disparities among immigrant and ethnic minority groups? An integrative literature review.

OBJECTIVES: Recent investigations of ethnicity related disparities in health care have focused on the contribution of providers' implicit biases. A significant effect on health care outcomes is suggested, but the results are mixed. The purpose of this integrative literature review is to provide an overview and synthesize the current empirical research on the potential influence of health care professionals' attitudes and behaviors towards ethnic minority patients on health care disparities. DESIGN: Integrative literature review. DATA SOURCES: Four internet-based literature indexes - MedLine, PsychInfo, Sociological Abstracts and Web of Science - were searched for articles published between 1982 and 2012 discussing health care professionals' attitudes or behaviors towards ethnic minority patients. REVIEW METHODS: Thematic analysis was used to synthesize the relevant findings. RESULTS: We found 47 studies from 12 countries. Six potential barriers to health care for ethnic minorities were identified that may be related to health care professionals' attitudes or behaviors: Biases, stereotypes and prejudices; Language and communication barriers; Cultural misunderstandings; Gate-keeping; Statistical discrimination; Specific challenges of delivering care to undocumented migrants. CONCLUSIONS: Data on health care professionals' attitudes or behaviors are both limited and inconsistent. We thus provide reflections on methods, conceptualization, interpretation and the importance of the geographical or socio-political settings of potential studies. More empirical data is needed, especially on health care professionals' attitudes or behaviors towards (irregular) migrant patients.

The influence of patients' immigration background and residence permit status on treatment decisions in health care. Results of a factorial survey among general practitioners in Switzerland.

This study examines the influence of patients' immigration background and residence permit status on physicians' willingness to treat patients in due time. A factorial survey was conducted among 352 general practitioners with a background in internal medicine in a German-speaking region in Switzerland. Participants expressed their self-rating (SR) as well as the expected colleague-rating (CR) to provide immediate treatment to 12 fictive vignette patients. The effects of the vignette variables were analysed using random-effects models. The results show that SR as well as CR was not only influenced by the medical condition or the physicians' time pressure, but also by social factors such as the ethnicity and migration history, the residence permit status, and the economic condition of the patients. Our findings can be useful for the development of adequate, practically relevant teaching and training materials with the ultimate aim to reduce unjustified discrimination or social rationing in health care.