Ralf J Jox

Lausanne University Hospital and University of Lausanne

Background The COVID-19 pandemic posed many unprecedented challenges to health care systems and public health efforts worldwide. Policy making and science were deeply intertwined, in particular with regard to the justification of health policy measures. In this context, ethical considerations were often at the core of decision-making trade-offs. Ho...

Background: In this paper we present findings from a survey with 256 medical students in Switzerland about their perception of Covid-19 public health measures, their attitude towards digital health apps to respond to the pandemic, and whether the Covid-19 crisis changed their willingness to share their health data in the future for public health re...

Severe brain injury can result in disorders of consciousness (DoC), including coma, vegetative state/unresponsive wakefulness syndrome, and minimally conscious state. Improved emergency and trauma medicine response, in addition to expanding efforts to prevent premature withdrawal of life-sustaining treatment, has led to an increased number of patie...

Im Beobachtungszeitraum zwischen 1999 und 2022 hat das Schweizerische Bundesamt für Statistik 14 170 assistierte Suizide dokumentiert. In diesem 24-Jahres-Zeitraum haben die jährlichen Fallzahlen markant zugenommen: Während im Jahr 1999 lediglich 63 Fälle verzeichnet wurden, betrug die Anzahl der Fälle im Jahr 2022 nahezu 1600; dies entspricht 2,1...

This article elaborates research participant perspectives on the communication of individual research results from genomic analyses. While most analyses focus on how to communicate results from the perspectives of clinicians or researchers, there is insufficient data on user perspectives and how this information may be used, valued, and interpreted...

Background Worldwide, populations are ageing. Together with improved home care and limited places in residential aged care facilities (RACF), this leads to people being admitted to RACF at more advanced ages and in increasingly fragile states of health, often with cognitive impairment. Advance directive completion rates are low, so many people are...

L’une des dernières barrières de la vie a cédé : même la mort se numérise. La présente étude examine comment les outils numériques pourraient redéfinir la fin de vie et le deuil. De la planification funéraire à la communication post-mortem avec des « deadbots », le livre propose une typologie détaillée du domaine du Digital Afterlife. Alors que des...

People with disorders of consciousness (DoC) are characteristically unable to synchronously participate in decision-making about clinical care or research. The inability to self-advocate exacerbates preexisting socioeconomic and geographic disparities, which include the wide variability observed across individuals, hospitals, and countries in acces...

Introduction In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate th...

Psychiatrists play a crucial role in evaluating requests and treatment indications for individuals experiencing gender incongruence, while also providing support throughout the transition process. Their work involves addressing both the psychological and somatic aspects of this journey, facilitating the profound identity changes it entails.

Objectives The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific litera...

Über das eigene Lebensende autonom bestimmen zu können, ist der Wunsch vieler Menschen. Höchste Gerichte in Deutschland und Österreich erkennen das Recht auf assistierten Suizid als eine Form des selbstbestimmten Sterbens an. In der Schweiz tragen Sterbehilfeorganisationen zu einer breiteren Akzeptanz bei. Wie aber ist die Suizidhilfe ethisch zu re...

Introduction Population ageing, technological advancements and an increasing emphasis on patient empowerment imply that individuals are increasingly confronted with intricate end-of-life decisions. Personal end-of-life health literacy skills may help empower individuals to participate more actively in their own end-of-life decisions, including enga...

Individuals often wait until the last moment to plan their end-of-life (EOL) care. Yet, decision-making capacity decreases with age, which could compromise engagement in and the effectiveness of advance care planning (ACP). Little is known about the association between cognitive abilities and the steps involved in the multifaceted process of ACP in...

Disorders of consciousness are neurological conditions characterized by impaired arousal and awareness of self and environment. Behavioral responses are absent or are present but fluctuating. Disorders of consciousness are commonly encountered in consequence of both acute and chronic brain injuries, yet reliable epidemiological estimates would requ...

Background Many widely used advance directives templates include direct questions on individuals’ preferences for cardiopulmonary resuscitation (CPR) in case of decision-making incapacity during medical emergencies. However, as knowledge of the survival rates of CPR is often limited, individuals’ advance decisions on CPR may be poorly aligned with...

Background In Switzerland, continuous deep sedation until death (CDSUD) is not legally regulated and the current clinical practice guidelines on palliative sedation from 2005 do not refer to it. In contrast, in France, a neighbouring country, CDSUD is regulated by a specific law and professional guidelines. International studies show that in cultur...

Introduction: Multiple morbidities, including neurodegenerative diseases such as dementia, which result in diminished decision-making capacity, make care and care planning complicated for Residential Aged Care Facility (RACF) residents. While Advance Care Planning (ACP) has been highlighted as essential for ensuring that this population receive car...

As the family usually plays a central role at the end of life, the quality of family relationships may influence how individuals approach advance care planning (ACP). Our study investigates the associations of trust in relatives with regard to end-of-life (EOL) issues—used as a proxy measure of family relationship quality—with individuals’ engageme...

Background: Documenting decisions about the relevance cardiopulmonary resuscitation (CPR) is a standard practice at hospital admission yet a complex task. Objective: Our aim was to explore how physicians approach and discuss CPR prognosis with older patients recently admitted to a post-acute care unit. Method: We recorded 43 conversations between p...

Personal health literacy is the ability of an individual to find, understand, and use information and services to inform health-related decisions and actions for oneself and others. The end of life is commonly characterized by the occurrence of one or several diseases, the use of many different types of healthcare services, and a need to make compl...

Background: Severe quantitative disorders of consciousness (DoC) due to acute brain injury affect up to 47% of patients upon admission to intensive care and early rehabilitation units. Nevertheless, the rehabilitation of this vulnerable group of patients has not yet been addressed in any German-language guidelines and has only been studied in a sm...

Background and objectives: German legislation establishes advance directives (ADs) as legally binding instruments that all involved parties need to adhere to. This applies also to family members who have been authorized as official surrogates of the AD's author. As surrogates, they are expected to make sure that the AD is being implemented. Our st...

Objectives The objective of our study was to determine whether, and to what degree, the ethical dimension was present in clinical practice guidelines (CPGs) on palliative sedation, and to identify the ethical issues with respect to the different forms of this practice. The purpose was purely to be descriptive; our aim was not to make any kind of no...

Background: The number of elderly people with dementia in nursing homes is increasing in French-speaking Switzerland. This study investigates the use of social robots to improve and/or maintain the quality of life of these subjects, analyzed from the perspective of beneficence. Methodology: Semi-structured face-to-face interviews were conducted in...

Objectives Medical decision-making at the end of life is common and should be as patient-centred as possible. Our study investigates older adults’ preferences towards three medical treatments that are frequently included in advance directive forms and their association with social, regional and health characteristics. Setting A cross-sectional stu...

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 hospita...

Background End-of-life medical decisions regarding life-supporting treatment frequently include questions on cardiopulmonary resuscitation (CPR) preferences, where individuals have to decide whether they would like to be resuscitated in case of cardiac arrest. However, knowledge of CPR survival rates in the general population is low, which may infl...

Background Advance care planning (ACP) involves formal structured communication around future health states and wishes, however, uptake is low. Behaviours such as discussing values and expressing wishes for future care may occur informally. This study aimed to map health related communication in older non-native language speakers in Switzerland. M...

Background Surrogate medical decision-making at the end of life is common and the patient’s partner is often the person who must make these critical decisions. The challenge of surrogate medical decision-making is to make decisions that best fit the patient‘s wishes. This study investigates subjective and objective knowledge of partner’s preference...

Background Individuals’ attitudes toward advance care planning (ACP) can be influenced by their health literacy and knowledge of the topic. Health literacy skills influence how people perceive their health difficulties, communicate with healthcare providers, and make medical decisions. Knowledge regarding end-of-life medical situations is likely to...

Background While numerous cross-sectional studies reported that advance directive (AD) completion varies significantly by age, gender, and education level, little is known about the factors that prompt AD completion over time. This study aims to identify the social, regional, and health characteristics associated with AD adoption over four years in...

Background Advance care planning (ACP) is a process that ideally leads to the writing of advance directives (ADs). The ACP process can be explained using the TransTheoretical Model (TTM), which describes the consecutive stages of intentional change (precontemplation, contemplation, preparation, action and maintenance) that individuals follow before...

Introduction Advance care planning (ACP) has been shown to promote care that is coherent with patient wishes, however retaining decision making capacity (DMC) is a precondition for traditional ACP models. Alternative models of ACP are needed for use with and on behalf of people lacking and who no longer have DMC. We have developed a model of ACP by...

Interest in disorders of consciousness (DoC) has grown substantially over the past decade and has illuminated the importance of improving understanding of DoC biology; care needs (use of monitoring, performance of interventions, and provision of emotional support); treatment options to promote recovery; and outcome prediction. Exploration of these...

The scholarly debate on advance directives (ADs) in the context of dementia is mainly built around ethical arguments. Empirical studies that shed light into the realities of ADs of persons living with dementia are few and far between and too little is known about the effect of national AD legislation on such realities. This paper offers insight int...

Modern palliative care, as it was founded in the 1960s and 1970s in England and later taken up and developed in many countries across the world, has been conceptualized as an alternative or even opposition to life-prolonging, organ-centered and disease-modifying medicine. As opposed to high-tech medicine it has been term ‘low-tech, high-touch care’...

Objectives: While there is a growing body of literature on the wish to die in older patients, there is little research about their will to live. Exploring the subjective will to live (WTL) offers valuable insights into the patients' resources and motivations, which could help improving geriatric palliative care. The aim of this study was to examin...

Aim We examined physicians' perspectives on the mental capabilities of pediatric patients with unresponsive wakefulness syndrome (UWS) and their attitudes towards limiting life‐sustaining treatment (LST) in an international context. Method A questionnaire survey was conducted among 267 neuropediatricians, practicing in 65 countries. Comparisons we...

Introduction Switzerland lacks specific legal regulation of assistance in suicide. The practice has, however, developed since the 1980s as a consequence of a gap in the Swiss Criminal Code and is performed by private right-to-die organisations. Traditionally, assistance in suicide is considered contrary to the philosophy of palliative care. Nonethe...

Measuring health literacy allows to assess individuals’ competencies to deal with health issues; it influences how individuals perceive their health problems, communicate with healthcare providers, or make medical decisions. The end of life is commonly characterized by one or several diseases, healthcare services’ uses and requires individuals to m...

Surrogate medical decision-making at the end of life is common and the patient’s partner is often the person who must make these critical decisions. The challenge of surrogate medical decision-making is to make decisions that best fit the patient's wishes. This study investigates how accurately older adult couples assess each other’s preferences fo...

Despite being widely regarded as a major cause of health inequalities, little is known regarding levels of health literacy among older adults in Switzerland. To fill this gap, this study assesses health literacy and its associations with individuals’ social, regional, and health characteristics in a nationally representative sample of adults aged 5...

Objective: The principal aim of this study was to identify, systematically and transparently, clinical practice guidelines (CPGs) on palliative sedation from around the world. Methods: A systematic search was performed using 5 databases, grey literature search tools, citation tracking, and contact with palliative care experts across the world. Curr...

Introduction: Ischemic stroke is a leading cause of disability and mortality worldwide. As acute stroke patients often lose decision-making capacity, acute management is fraught with complicated decisions regarding life-sustaining treatment (LST). We aimed to explore (1) the perspectives and experiences of clinicians regarding the use of predictiv...

Objectives Little is known about the factors leading to a change in goals of care (CGC) in patients with an acute ischaemic stroke (AIS). Our aim was to analyse the proportion and outcome of such patients and identify medical predictors of a CGC during acute hospitalisation. Methods We retrospectively reviewed all patients who had an AIS over a 13...

Objective To investigate staff attitudes toward assisted suicide in the hospital setting in Switzerland. Design Cross-sectional study. Setting Two University Hospitals in French speaking regions of Switzerland. Participants 13’834 health care professionals, including all personnel caring for patients, were invited to participate. Main outcome m...

Objectives The wish to die (WTD) in persons near the end of life is a clinically important, ethically and practically complex phenomenon as demonstrated by the intense debates on assisted dying legislation around the world. Despite global aging and increasing institutionalization in old age, WTD among residents of long-term care facilities (LTCF) i...

Background Health decisions occur in a context with omnipresent social influences. Information concerning what other patients decide may present certain interventions as more desirable than others. Objectives To explore how physicians refer to what other people decide in conversations about the relevancy of cardio-pulmonary resuscitation (CPR) or...

Background understanding end-of-life preferences in the general population and how they are structured in people’s minds is essential to inform how to better shape healthcare services in accordance with population expectations for their end of life and optimise communication on end-of-life care issues. Objective explore key dimensions underlying e...

The increasing availability of brain data within and outside the biomedical field, combined with the application of artificial intelligence (AI) to brain data analysis, poses a challenge for ethics and governance. We identify distinctive ethical implications of brain data acquisition and processing, and outline a multi-level governance framework. T...

Covid-19 has overshadowed another severe health crisis, which has also been called an epidemic, though not of infectious origin: the misuse of opioid drugs that has generated an enormous morbidity and mortality, particularly in North America, but threatening to increasingly affect Europe as well. In this crisis, misuse, overuse and underuse of opio...

Clinical ethics consultation (CEC) in Europe originated with a certain delay compared to North America, but its historical development led to a rich array of diverse approaches, concepts and practices. While retracing its history, the authors highlight some of the important pioneers that paved the way of CEC in Europe. Today, European CEC faces sig...

Introduction: This study aims to identify the full spectrum of ethical challenges of all forms of palliative sedation for adults as presented in current clinical practice guidelines (CPGs) and to determine whether CPGs specify ethical challenges of this therapy for patients with cancer and non-cancer and, if so, how exactly they do this. To the be...

Background Perceptions and knowledge regarding end-of-life health and health care can influence individuals' advance care planning, such as the completion and content of advance directives. Objectives To assess older adults' perceptions of medical end-of-life situations in Switzerland along with their accuracy and corresponding associations with s...

Background: The Curing Coma Campaign (CCC) is a multidisciplinary global initiative focused on evaluation, diagnosis, treatment, research, and prognostication for patients who are comatose due to any etiology. To support this mission, the CCC Ethics Working Group conducted a survey of CCC collaborators to identify the ethics priorities of the CCC...

BACKGROUND AND AIM: Despite being widely regarded as a major cause of health inequalities, little is known regarding health literacy and its association with certain personal characteristics among older adults in Switzerland. To fill this gap, this study assesses health literacy and its associations with individuals’ social, regional, and health ch...

Objective: In Switzerland, palliative sedation consists of using sedatives to relieve terminally ill patients. It is divided into several steps, with one of them consisting of informing patients and relatives about the procedure. In the current recommendations, there is a lack of orientation about how and when this discussion should take place. He...

Nutrition of people with dementia leads to numerous ethical questions in practice. Starting from the sociocultural significance of nutrition for humans in general and persons with dementia in particular, this article reflects in an exemplary way on two ethical questions: first, the question of the use of artificial nutrition and second the question...

Background: Shared decision-making is the cornerstone of patient-physician communication on life-sustaining therapies, such as cardio-pulmonary resuscitation (CPR). Nevertheless, the application of these standards to everyday medical practice in hospitals is limited. Our objective was to establish clear and comprehensive recommendations for junior...

Persons with mental disorders who are resistant to evidence-based treatment can be referred to as patients with severe and persistent mental illness (SPMI). Some patients with SPMI develop a strong wish for assisted dying. Switzerland has the longest history of non-medicalized assisted dying, which is considered a civil right even in non-pathologic...

Introduction This study aims to identify the full spectrum of ethical challenges of all forms of palliative sedation for adults as presented in current clinical practice guidelines (CPGs), and to determine whether CPGs specify ethical challenges of this therapy for cancer and non-cancer patients and, if so, how exactly they do this. To the best of...

Background Functional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome (UWS) and the minimally conscious state (MCS). It remains unclear how it informs surrogate decision-making. Objective To explore how the next of kin of patients with disorders of consciousness (...

A brain-computer interface (BCI) is a rapidly evolving neurotechnology connecting the human brain with a computer. In its classic form, brain activity is recorded and used to control external devices like protheses or wheelchairs. Thus, BCI users act with the power of their thoughts. While the initial development has focused on medical uses of BCIs...

Background Advance care planning (ACP) is particularly appropriate for persons with early dementia (PWED) since it promotes conversations about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients’ observed behavior, emphasizes prospective and relational autonomy, and may be generally consistent wit...