Physician-related determinants of medical end-of-life decisions - A mortality follow-back study in Switzerland.

BACKGROUND: Medical end-of-life decisions (MELD) and shared decision-making are increasingly important issues for a majority of persons at the end of life. Little is known, however, about the impact of physician characteristics on these practices. We aimed at investigating whether MELDs depend on physician characteristics when controlling for patient characteristics and place of death. METHODS AND FINDINGS: Using a random sample (N = 8,963) of all deaths aged 1 year or older registered in Switzerland between 7 August 2013 and 5 February 2014, questionnaires covering MELD details and physicians' demographics, life stance and medical formation were sent to certifying physicians. The response rate was 59.4% (N = 5,328). Determinants of MELDs were analyzed in binary and multinomial logistic regression models. MELDs discussed with the patient or relatives were a secondary outcome. A total of 3,391 non-sudden nor completely unexpected deaths were used, 83% of which were preceded by forgoing treatment(s) and/or intensified alleviation of pain/symptoms intending or taking into account shortening of life. International medical graduates reported forgoing treatment less often, either alone (RRR = 0.30; 95% CI: 0.21-0.41) or combined with the intensified alleviation of pain and symptoms (RRR = 0.44; 0.34-0.55). The latter was also more prevalent among physicians who graduated in 2000 or later (RRR = 1.60; 1.17-2.19). MELDs were generally less frequent among physicians with a religious affiliation. Shared-decision making was analyzed among 2,542 decedents. MELDs were discussed with patient or relatives less frequently when physicians graduated abroad (OR = 0.65, 95% CI: 0.50-0.87) and more frequently when physicians graduated more recently; physician's sex and religion had no impact. CONCLUSIONS: Physicians' characteristics, including the country of medical education and time since graduation had a significant effect on the likelihood of an MELD and of shared decision-making. These findings call for additional efforts in physicians' education and training concerning end-of-life practices and improved communication skills.

Swiss-CHAT: Citizens Discuss Priorities for Swiss Health Insurance Coverage.

BACKGROUND: As universal health coverage becomes the norm in many countries, it is important to determine public priorities regarding benefits to include in health insurance coverage. We report results of participation in a decision exercise among residents of Switzerland, a high-income country with a long history of universal health insurance and deliberative democracy. METHODS: We adapted the Choosing Healthplans All Together (CHAT) tool, an exercise developed to transform complex healthcare allocation decisions into easily understandable choices, for use in Switzerland. We conducted CHAT exercises in twelve Swiss cities with recruitment from a range of socio-economic backgrounds, taking into account differences in language and culture. RESULTS: Compared to existing coverage, a majority of 175 participants accepted greater general practice gatekeeping (94%), exclusion of invasive life-sustaining measures in dying patients (80%), longer waiting times for non-urgent episodic care (78%), greater adherence to cost-effectiveness guidelines in chronic care (66%), and lower premium subsidies (51%). Most initially chose greater coverage for dental care (59%), quality of life (57%), and long-term care (90%). During group deliberations, participants increased coverage for out-of-pocket costs (58%) and mental health to current levels (41%) and beyond current levels for rehabilitation (50%), and decreased coverage for quality of life to current levels (74%). Following group deliberation, they tended to change their views back to below current coverage for help with out-of-pocket costs, and back to current levels for rehabilitation. Most participants accepted the plan as appropriate and fair. A significant number would have added nothing. CONCLUSION: Swiss participants who have engaged in a priority setting exercise accept complex resource allocation trade-offs in healthcare coverage. Moreover, in the context of a well-funded healthcare system with universal coverage centered on individual choice, at least some of our participants believed a fully sufficient threshold of health insurance coverage was achieved.

Solidarity and cost management: Swiss citizens' reasons for priorities regarding health insurance coverage.

CONTEXT: Approaches to priority-setting for scarce resources have shifted to public deliberation as trade-offs become more difficult. We report results of a qualitative analysis of public deliberation in Switzerland, a country with high health-care costs, an individual health insurance mandate and a strong tradition of direct democracy with frequent votes related to health care. METHODS: We adapted the Choosing Healthplans All Together (CHAT) tool, an exercise developed to transform complex health-care allocation decisions into easily understandable choices, for use in Switzerland. We conducted focus groups in twelve Swiss cities, recruiting from a range of socio-economic backgrounds in the three language regions. FINDINGS: Participants developed strategic arguments based on the importance of basic coverage for all, and of cost-benefit evaluation. They also expressed arguments relying on a principle of solidarity, in particular the importance of protection for vulnerable groups, and on the importance of medical care. They struggled with the place of personal responsibility in coverage decisions. In commenting on the exercise, participants found the degree of consensus despite differing opinions surprising and valuable. CONCLUSION: The Swiss population is particularly attentive to the costs of health care and means of reducing these costs. Swiss citizens are capable of making trade-offs and setting priorities for complex health issues.

Medical end-of-life practices in Swiss cultural regions: a death certificate study.

BACKGROUND: End-of-life decisions remain controversial. Switzerland, with three main languages shared with surrounding countries and legal suicide assistance, allows exploration of the effects of cultural differences on end-of-life practices within the same legal framework. METHODS: We conducted a death certificate study on a nationwide continuous random sample of Swiss residents. Using an internationally standardized tool, we sent 4998, 2965, and 1000 anonymous questionnaires to certifying physicians in the German-, French-, and Italian-speaking regions. RESULTS: The response rates were 63.5%, 51.9%, and 61.7% in the German-, French-, and Italian-speaking regions, respectively. Non-sudden, expected deaths were preceded by medical end-of-life decisions (MELDs) more frequently in the German- than in the French- or Italian-speaking region (82.3% vs. 75.0% and 74.0%, respectively), mainly due to forgoing life-prolonging treatment (70.0%, 59.8%, 57.4%). Prevalence of assisted suicide was similar in the German- and French-speaking regions (1.6%, 1.2%), with no cases reported in the Italian-speaking region. Patient involvement was smaller in the Italian- than in the French- and German-speaking regions (16.0%, 31.2%, 35.6%). Continuous deep sedation was more frequent in the Italian- than in the French- and German-speaking regions (34.4%, 26.9%, 24.5%), and was combined with MELDs in most cases. CONCLUSION: We found differences in MELD prevalence similar to those found between European countries. On an international level, MELDs are comparably frequent in all regions of Switzerland, in line with the greater role given to patient autonomy. Our findings show how cultural contexts and legislation can interact in shaping the prevalence of MELDs.

Should gratitude be a requirement for access to live organ donation?

Gratitude is both expected and problematic in live organ donation. Are there grounds to require it, and to forbid access to live donor transplantation to a recipient who fails to signal that he feels any form of gratitude? Recipient gratitude is not currently required for organ donation, but it is expected and may be a moral requirement. Despite this, we argue that making it a condition for live organ transplantation would be unjustified. It would constitute a problematic and disproportionate punishment for perceived immoral behaviour on the part of the recipient. It would also bar the donor from positive aspects of organ donation that remain even in the absence of recipient gratitude. A potential recipient's lack of gratitude should be explored as a possible symptom of other morally problematic issues and integrated into the information provided to the potential donor. Recognition of the donor's gift and gratitude for it may also need to be expressed in part by others. This last aspect is relevant even in cases where the recipient feels and expresses gratitude.

Defining categories of actionability for secondary findings in next-generation sequencing.

Next-generation sequencing is increasingly used in clinical practice for the diagnosis of Mendelian diseases. Because of the high likelihood of secondary findings associated with this technique, the process of informing patients is beset with new challenges. One of them is regarding the type of secondary findings that ought to be disclosed to patients. The aim of this research is to propose a practical implementation of the notion of actionability, a common criteria justifying the disclosure of secondary findings but whose interpretation varies greatly among professionals. We distinguish three types of actionability corresponding to (1) well-established medical actions, (2) patient-initiated health-related actions and (3) life-plan decisions. We argue that actionability depends on the characteristics of the mutation or gene and on the values of patients. In discussing the return of secondary findings, it is important that the physician tries to get an impression of the specific situation and values of patients. Regarding variants of uncertain clinical significance in actionable genes, we found that different understandings of autonomy lead to different conclusions and that, for some of them, it may be legitimate to refrain from returning uncertain information.

Assisted Suicide in Switzerland: Clarifying Liberties and Claims.

Assisting suicide is legal in Switzerland if it is offered without selfish motive to a person with decision-making capacity. Although the 'Swiss model' for suicide assistance has been extensively described in the literature, the formally and informally protected liberties and claims of assistors and recipients of suicide assistance in Switzerland are incompletely captured in the literature. In this article, we describe the package of rights involved in the 'Swiss model' using the framework of Hohfeldian rights as modified by Wenar. After outlining this framework, we dissect the rights involved in suicide assistance in Switzerland, and compare it with the situation in England and Germany. Based on this approach, we conclude that in Switzerland, claim rights exist for those requesting suicide assistance, and for those who are considering providing such assistance, even though no entitlements exist toward suicide assistance. We then describe the implementation of the 'Swiss model' and difficulties arising within it. Clarifying these issues is important to understand the Swiss situation, to evaluate what features of it may or may not be worth correcting or emulating, and to understand how it can impact requests for suicide assistance in other countries due to 'suicide tourism'. It is also important to understand exactly what sets Switzerland apart from other countries with different legislations regarding suicide assistance.

Self-Reported Rationing Behavior Among US Physicians: A National Survey.

BACKGROUND: Rationing is a controversial topic among US physicians. Understanding their attitudes and behaviors around rationing may be essential to a more open and sensible professional discourse on this important but controversial topic. OBJECTIVE: To describe rationing behavior and associated factors among US physicians. DESIGN: Survey mailed to US physicians in 2012 to evaluate self-reported rationing behavior and variables related to this behavior. SETTING: US physicians across a full spectrum of practice settings. PARTICIPANTS: A total of 2541 respondents, representing 65.6 % of the original mailing list of 3872 US addresses. INTERVENTIONS: The study was a cross-sectional analysis of physician attitudes and self-reported behaviors, with neutral language representations of the behaviors as well as an embedded experiment to test the influence of the word "ration" on perceived responsibility. MAIN OUTCOME MEASURES: Overall percentage of respondents reporting rationing behavior in various contexts and assessment of attitudes toward rationing. KEY RESULTS: In total, 1348 respondents (53.1 %) reported having personally refrained within the past 6 months from using specific clinical services that would have provided the best patient care, because of health system cost. Prescription drugs (n = 1073 [48.3 %]) and magnetic resonance imaging (n = 922 [44.5 %]) were most frequently rationed. Surgical and procedural specialists were less likely to report rationing behavior (adjusted odds ratio [OR] [95 % CI], 0.8 [0.9-0.9] and 0.5 [0.4-0.6], respectively) compared to primary care. Compared with small or solo practices, those in medical school settings reported less rationing (adjusted OR [95 % CI], 0.4 [0.2-0.7]). Physicians who self-identified as very or somewhat liberal were significantly less likely to report rationing (adjusted OR [95 % CI], 0.7 [0.6-0.9]) than those self-reporting being very or somewhat conservative. A more positive opinion about rationing tended to align with greater odds of rationing. CONCLUSIONS: More than one-half of respondents engaged in behavior consistent with rationing. Practicing physicians in specific subgroups were more likely to report rationing behavior.

Adapting Preclinical Benchmarks for First-in-Human Trials of Human Embryonic Stem Cell-Based Therapies.

UNLABELLED: : As research on human embryonic stem cell (hESC)-based therapies is moving from the laboratory to the clinic, there is an urgent need to assess when it can be ethically justified to make the step from preclinical studies to the first protocols involving human subjects. We examined existing regulatory frameworks stating preclinical requirements relevant to the move to first-in-human (FIH) trials and assessed how they may be applied in the context of hESC-based interventions to best protect research participants. Our findings show that some preclinical benchmarks require rethinking (i.e., identity, purity), while others need to be specified (i.e., potency, viability), owing to the distinctive dynamic heterogeneity of hESC-based products, which increases uncertainty and persistence of safety risks and allows for limited predictions of effects in vivo. Rethinking or adaptation of how to apply preclinical benchmarks in specific cases will be required repeatedly for different hESC-based products. This process would benefit from mutual learning if researchers included these components in the description of their methods in publications. SIGNIFICANCE: To design translational research with an eye to protecting human participants in early trials, researchers and regulators need to start their efforts at the preclinical stage. Existing regulatory frameworks for preclinical research, however, are not really adapted to this in the case of stem cell translational medicine. This article reviews existing regulatory frameworks for preclinical requirements and assesses how their underlying principles may best be applied in the context of human embryonic stem cell-based interventions for the therapy of Parkinson's disease. This research will help to address the question of when it is ethically justified to start first-in-human trials in stem cell translational medicine.

Helping medical students to acquire a deeper understanding of truth-telling.

PROBLEM: Truth-telling is an important component of respect for patients' self-determination, but in the context of breaking bad news, it is also a distressing and difficult task. INTERVENTION: We investigated the long-term influence of a simulated patient-based teaching intervention, integrating learning objectives in communication skills and ethics into students' attitudes and concerns regarding truth-telling. We followed two cohorts of medical students from the preclinical third year to their clinical rotations (fifth year). Open-ended responses were analysed to explore medical students' reported difficulties in breaking bad news. CONTEXT: This intervention was implemented during the last preclinical year of a problem-based medical curriculum, in collaboration between the doctor-patient communication and ethics programs. OUTCOME: Over time, concerns such as empathy and truthfulness shifted from a personal to a relational focus. Whereas 'truthfulness' was a concern for the content of the message, 'truth-telling' included concerns on how information was communicated and how realistically it was received. Truth-telling required empathy, adaptation to the patient, and appropriate management of emotions, both for the patient's welfare and for a realistic understanding of the situation. LESSONS LEARNED: Our study confirms that an intervention confronting students with a realistic situation succeeds in making them more aware of the real issues of truth-telling. Medical students deepened their reflection over time, acquiring a deeper understanding of the relational dimension of values such as truth-telling, and honing their view of empathy.

Non-physician Clinicians in Sub-Saharan Africa and the Evolving Role of Physicians.

Responding to critical shortages of physicians, most sub-Saharan countries have scaled up training of non-physician clinicians (NPCs), resulting in a gradual but decisive shift to NPCs as the cornerstone of healthcare delivery. This development should unfold in parallel with strategic rethinking about the role of physicians and with innovations in physician education and in-service training. In important ways, a growing number of NPCs only renders physicians more necessary - for example, as specialized healthcare providers and as leaders, managers, mentors, and public health administrators. Physicians in sub-Saharan Africa ought to be trained in all of these capacities. This evolution in the role of physicians may also help address known challenges to the successful integration of NPCs in the health system.

Fleshing out vulnerability.

In the literature on medical ethics, it is generally admitted that vulnerable persons or groups deserve special attention, care or protection. One can define vulnerable persons as those having a greater likelihood of being wronged - that is, of being denied adequate satisfaction of certain legitimate claims. The conjunction of these two points entails what we call the Special Protection Thesis. It asserts that persons with a greater likelihood of being denied adequate satisfaction of their legitimate claims deserve special attention, care or protection. Such a thesis remains vague, however, as long as we do not know what legitimate claims are. This article aims at dispelling this vagueness by exploring what claims we have in relation to health care - thus fleshing out a claim-based conception of vulnerability. We argue that the Special Protection Thesis must be enriched as follows: If individual or group X has a greater likelihood of being denied adequate satisfaction of some of their legitimate claims to (i) physical integrity, (ii) autonomy, (iii) freedom, (iv) social provision, (v) impartial quality of government, (vi) social bases of self-respect or (vii) communal belonging, then X deserves special attention, care or protection. With this improved understanding of vulnerability, vulnerability talk in healthcare ethics can escape vagueness and serve as an adequate basis for practice.