Online decision aid for patients with prostate cancer evaluated by 11 290 patients and 91 urologists in Germany.

OBJECTIVE: To evaluate the nationwide online decision aid 'Entscheidungshilfe Prostatakrebs' (established in 2016, >11.000 users and 60 new users/week) for patients with non-metastatic prostate cancer (PCa), from the perspective of patients and urologists. PATIENTS AND METHODS: To provide personalised information, the tool collects most of the International Consortium for Health Outcomes Measurement standard set, personal preferences, psychological features, and a validated rating of the tool. To evaluate urologists' opinions, we developed a structured two-page questionnaire. All data were collected anonymously. RESULTS: From June 2016 to December 2020, 11 290 patients used the PCa decision aid. Their median (interquartile range [IQR]) age was 67 (61-72) years. The median (IQR) time from initial diagnosis to using the tool was 4 (3-7) weeks. In all, 87.7% of users reported high satisfaction. In a multivariable model, predictors for considering observation were higher knowledge, using the decision aid alone, lower oncological risk, normal erectile function, and respective personal preferences. Of 194 urologists, 91 (47%) had implemented the decision aid in their clinical practice. The urologists' mean (SD) satisfaction score (1 'very good'; 6 'unsatisfactory') with it was 1.45 (0.55), and 92% recommended it. Half of the urologists reported time savings. CONCLUSION: Patients and urologists report a very high level of acceptance and satisfaction with this online tool. It offers advantages in shared decision-making and time efficiency. The usage of the decision aid might improve the adoption of active surveillance and watchful waiting when indicated.

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.

Advance Care Planning in Switzerland: Chances and challenges of delivering high-quality ACP in a small high-income, multilingual, federally organized country.

We describe the development of ACP in Switzerland during the last decade in the German- and French-speaking cantons and on the national level. In 2013, a revision of the Swiss civil law came into force, declaring advance directives (ADs) as binding. Since then, ACP has been researched and implemented primarily by universities and university hospitals. Despite the foundation of the national association "ACP Swiss" in 2020, several national initiatives, and a roadmap for a national implementation, many challenges and barriers still remain. There is, however, reasonable hope to implement high-quality ACP throughout Switzerland within the next ten years.

Genomic newborn screening: Are we entering a new era of screening?

Population newborn screening (NBS) for phenylketonuria began in the United States in 1963. In the 1990s electrospray ionization mass spectrometry permitted an array of pathognomonic metabolites to be identified simultaneously, enabling up to 60 disorders to be recognized with a single test. In response, differing approaches to the assessment of the harms and benefits of screening have resulted in variable screening panels worldwide. Thirty years on and another screening revolution has emerged with the potential for first line genomic testing extending the range of screening conditions recognized after birth to many hundreds. At the annual SSIEM conference in 2022 in Freiburg, Germany, an interactive plenary discussion on genomic screening strategies and their challenges and opportunities was conducted. The Genomics England Research project proposes the use of Whole Genome Sequencing to offer extended NBS to 100 000 babies for defined conditions with a clear benefit for the child. The European Organization for Rare Diseases seeks to include "actionable" conditions considering also other types of benefits. Hopkins Van Mil, a private UK research institute, determined the views of citizens and revealed as a precondition that families are provided with adequate information, qualified support, and that autonomy and data are protected. From an ethical standpoint, the benefits ascribed to screening and early treatment need to be considered in relation to asymptomatic, phenotypically mild or late-onset presentations, where presymptomatic treatment may not be required. The different perspectives and arguments demonstrate the unique burden of responsibility on those proposing new and far-reaching developments in NBS programs and the need to carefully consider both harms and benefits.

[Shared Decision-Making as a Genuine Interprofessional Endeavor]. / Shared Decision-Making als genuin interprofessionelle Aufgabe.

Shared Decision-Making as a Genuine Interprofessional Endeavor Abstract. In parallel with the growing complexity of decision-making processes, also the complexity of communication increases. This phenomenon requires adapted communication skills from all professions involved in the treatment of the patient. Consequently, the process of shared decision-making (SDM) also requires the continuous and active involvement of all the professions involved in the care process. Like the concept of interprofessional collaboration (IP), also SDM pursues the goal of creating the best possible framework conditions for the clinical context (in this case, treatment that is "tailored" to the person and agreed with him or her on the basis of his or her preferences and values). The numerous positive effects of both SDM and IP make the integration of both approaches in clinical practice not only an ethical necessity, but also a prerequisite for optimal treatment quality. The specific structure of SDM helps not only in a dyadic decision-making situation between physician and patient. It also encourages the interprofessional team to move away from an individualistic view of a single best solution to a more interprofessional team approach, which benefits both the patient and all the involved caregivers.

Shared decision-making and patient and public involvement: Can they become standard in Switzerland?

The Swiss healthcare system is highly decentralized, making implementation of shared decision making (SDM) and patient and public involvement (PPI) quite slow; nonetheless, change is happening. SDM is now a core communication competency for medical school graduates, as reflected by a dedicated station on the federal exam, and is endorsed by several national societies. Multiple local initiatives are contributing to international best practices, local implementation, and increased capacity. PPI is also gaining momentum, most notably in research, with the development of a national platform for clinical research and inclusion of patients in the evaluation committees for funding. The challenge now is going from example projects by motivated early adopters in academia to making SDM and PPI standard practice.

Inequitable Access to Transplants: Adults With Impaired Decision-Making Capacity.

Inequitable access to deceased donor organs for transplantation has received considerable scrutiny in recent years. Emerging evidence suggests patients with impaired decision-making capacity (IDC) face inequitable access to transplantation. The "Ethical and Legal Issues" working group of the European Society of Transplantation undertook an expert consensus process. Literature relating to transplantation in patients with IDC was examined and collated to investigate whether IDC is associated with inferior transplant outcomes and the legitimacy of this healthcare inequality was examined. Even though the available evidence of inferior transplant outcomes in these patients is limited, the working group concluded that access to transplantation in patients with IDC may be inequitable. Consequently, we argue that IDC should not in and of itself be considered as a barrier to either registration on the transplant waiting list or allocation of an organ. Strategies for non-discrimination should focus on ensuring eligibility is based upon sound evidence and outcomes without reference to non-medical criteria. Recommendations to support policy makers and healthcare providers to reduce unintended inequity and inadvertent discrimination are set out. We call upon transplant centres and national bodies to include data on decision-making capacity in routine reporting schedules in order to improve the evidence base upon which organ policy decisions are made going forward.

Supportive needs of informal caregivers of people with amyotrophic lateral sclerosis in Switzerland: a qualitative study.

OBJECTIVE: This study explores the supportive needs of informal caregivers of people with amyotrophic lateral sclerosis (ALS) in Switzerland. METHOD: We conducted semi-structured interviews with nine informal caregivers currently providing care to a person with ALS, 14 bereaved informal caregivers, and 13 healthcare professionals. Interviews were recorded on digital audio and analysed using an inductive thematic analysis within a realist framework. RESULT: Informal caregivers discussed five themes of support needs relating to being overburdened by administrative demand, in contact with healthcare providers, home support, especially during the terminal phase, and having or lacking social support. Healthcare professionals discussed three themes of support needs of informal caregivers which related to the general institutional support for informal caregivers, their own work as caring for informal caregivers, and the challenges in healthcare for families with ALS they encountered. SIGNIFICANCE OF RESULTS: Informal caregiving for people with ALS can be demanding. This study provides evidence for improvements in supporting informal caregivers. It shows administrative needs of informal caregivers, stresses their needs regarding advance care planning early in the context of ALS, and underlines the importance of social support, be it in peer-groups or community care.

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.

[Heidelberg Milestones Communication (HeiMeKOM) - Experiences, Best Practice Examples and Recommendations from the Final Symposium on January 30 and 31 in 2020]. / Heidelberger Meilenstein Kommunikation (HeiMeKOM) ­ Erfahrungen, Best Practice Beispiele und Empfehlungen aus dem Abschluss-Symposium am 30./31. Januar 2020.

The National Cancer Plan emphasises the importance of medical communication and calls for its integration into medical education and training. In this context, the Milestone Communication Approach meets the communicative challenges in dealing with lung cancer patients. Interprofessional tandems, consisting of doctors and nurses, conduct structured conversations at defined moments with patients and their relatives. The concept aims at shared decision making, continuity in the care of lung cancer patients and the early integration of palliative care. During the symposium on the Heidelberg Milestone Communication in January 2020, recommendations on the care situation of lung cancer patients in advanced stages were developed. In addition, the further adaptability of HeiMeKOM to other settings and hospitals and to other diseases was discussed as well as the possibility of implementing such a concept in standard care. This article presents the experiences, best practice examples and recommendations discussed during the symposium in order to enable their extrapolation to other similarly oriented projects. The long-term goal is to transfer the milestone concept to other hospital, primarily certified lung cancer centers, and to ensure permanent funding. For further dissemination of the concept and, above all, to have it established in standard care, health policy awareness and support are required in addition to the integration of the concept in competence catalogues of continuing medical and nursing education.

AI support for ethical decision-making around resuscitation: proceed with care.

Artificial intelligence (AI) systems are increasingly being used in healthcare, thanks to the high level of performance that these systems have proven to deliver. So far, clinical applications have focused on diagnosis and on prediction of outcomes. It is less clear in what way AI can or should support complex clinical decisions that crucially depend on patient preferences. In this paper, we focus on the ethical questions arising from the design, development and deployment of AI systems to support decision-making around cardiopulmonary resuscitation and the determination of a patient's Do Not Attempt to Resuscitate status (also known as code status). The COVID-19 pandemic has made us keenly aware of the difficulties physicians encounter when they have to act quickly in stressful situations without knowing what their patient would have wanted. We discuss the results of an interview study conducted with healthcare professionals in a university hospital aimed at understanding the status quo of resuscitation decision processes while exploring a potential role for AI systems in decision-making around code status. Our data suggest that (1) current practices are fraught with challenges such as insufficient knowledge regarding patient preferences, time pressure and personal bias guiding care considerations and (2) there is considerable openness among clinicians to consider the use of AI-based decision support. We suggest a model for how AI can contribute to improve decision-making around resuscitation and propose a set of ethically relevant preconditions-conceptual, methodological and procedural-that need to be considered in further development and implementation efforts.

Advance care planning evaluation: a scoping review of best research practice.

Various indicators have been used to evaluate advance care planning, including completion rates, type of care received, and satisfaction. Recent consensus suggests, though, that receiving care consistent with one's goals is the primary outcome of advance care planning and assessment should capture this metric. Goal concordant care is challenging to measure, and there is little clarity about how best to do so. The aim of this scoping review is to explore what methods have been used to measure goal concordant care in the evaluation of advance care planning. PubMed, Embase, PsycINFO, CINAHL and Cochrane were searched in September 2020 to identify studies that aimed to track whether advance care planning affected the likelihood of patients receiving care that matched their preferred care. 135 original studies were included for review. Studies used retrospective chart review (36%, n=49), questionnaire (36%, n=48) and interview (31%, n=42), focusing on both patients and proxies. Studies considered both actual care received (55%, n=74) and hypothetical scenarios anticipating possible future care (49%, n=66); some studies did both. While the reviewed studies demonstrate the possibility of working towards a solid methodology, there were significant weaknesses. Notably, studies often lacked enough reporting clarity to be reproducible and, relatedly, key concepts, such as end-of-life or preferred care, were left undefined. The recommendations that follow from these findings inform future research approaches, supporting the development of a strong evidence base to guide advance care planning implementation in practice.

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.

Extending the Concept of Advance Care Planning to the Perinatal Period.

Easier access to prenatal diagnostic procedures led to its widespread use as a screening measure. Hence, today it is more common for life-limiting illnesses to be diagnosed during fetal life. The concept of Advance Care Planning (ACP) provides a framework for caregivers, families and their multidisciplinary teams to anticipate and plan ahead for potential future medical decisions so that the affected children are reliably treated according to their parents' individual values and wishes. In the perinatal context, ACP also has the potential to tackle the needs of unborn or newborn children with life-limiting illnesses and their families better, avoid unnecessary and burdensome measures and focus upon goals that are valuable and meaningful to both child and family.

Advance Care Planning for People with Dementia: The Role of General Practitioners.

General practitioners (GPs) play a key role in the timely diagnosis of dementia and also in advance care planning (ACP). They often have known patients and their families for decades and are familiar with their values and treatment preferences; they are, therefore, in a position to initiate the ACP process even before the appearance of the first symptoms of dementia and certainly following disclosure of the diagnosis. To do so, they should recognise whether patients are receptive to an ACP consultation or whether they might reject it for personal, social or cultural reasons. Under no circumstances should the patient or their family be coerced into making these provisions. In most countries, the current framework does not provide enough time and money for GPs to carry out actual ACP consultations completely on their own. There is evidence that specially trained health professionals are able to more effectively discuss treatment goals and limits of life-prolonging measures than GPs who are well acquainted with their patients. Consequently, we suggest that it will be the GPs' task to seize the right moment for starting an ACP process, to raise awareness of patients and their relatives about ACP, to test the patient's decision-making capacity and, finally, to involve appropriately trained healthcare professionals in the actual ACP consultation process. Care should be taken that these professionals delivering time-intensive ACP consultations are not only able to reflect on the patient's values but are also familiar with the course of the disease, the expected complications and the decisions that can be anticipated. The GP will ensure an active exchange with the ACP professional and should have access to the documentation drawn up in the ACP consultation process (treatment plan and advance directive including instructions for medical emergencies) as soon as possible. GPs as coordinators of healthcare provision should document appropriately all specialists involved in the care and ensure that treatment decisions are implemented in accordance with the patient's preferences for future care or the presumed will of the patient.