Ralf J Jox

Lausanne University Hospital and University of Lausanne

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. Comparison...

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 o...

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...

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...

Background: Patients with severe acute brain injury (SABI) lack decision-making capacity, calling on families and clinicians to make goal-concordant decisions, aligning treatment with patient's presumed goals-of-care. Using the family perspective, this study aimed to (1) compare patient's goals-of-care with the care they were receiving in the acute...

"Advance care planning (ACP) has become widely used in medical care in order to plan ahead of a loss of decision-making capacity. Since ACP aim is to promote anticipatory and substitute autonomy by engaging people ‒ and possibly their relatives ‒ in deciding about future goals of care and treatments, scientific literature in this field often posits...

"Background: Worldwide, assisted dying is currently on the rise. For health care professionals (HCP), this raises questions regarding roles and responsibilities. Switzerland is a social laboratory for a non-medicalized form of suicide assistance (SA). Aims: To describe experiences and attitudes of Swiss HCP toward SA in the hospital setting and to...

"Health decisions occur in a rich context in which social influences are omnipresent. The tendency to compare oneself with others has been described as one of the critical social factors influencing decision making. Based on a collection of 43 audio-recordings of hospital admission encounters which were analyzed though a conversation analytic metho...

Objective To explore how physicians elicit patients’ preferences about cardio-pulmonary resuscitation (CPR) during hospital admission interviews. Methods Conversation analysis of 37 audio-recorded CPR patient-physician discussions at admission to a geriatric hospital. Results The most encountered practice is when physicians submit an option to th...

Background and Objectives: Data on suicidal ideation, behavior and the risk factors in patients with dementia is scarce. To evaluate the prevalence of death wishes, suicidal ideation, and suicidal behavior of young (YOD) and late onset dementia (LOD) and to identify risk factors for suicidal ideation and behavior. Methods: We interviewed 157 family...

Background According to the European Association for Palliative Care, decisions regarding palliative sedation should not be made in response to requests for assisted dying, such as euthanasia or assisted suicide. However, several studies show that continuous deep sedation until death (CDSUD) – a particular form of sedation – has been considered as...

Background: Legally recognized advance directives (ADs) have to be signed by the person to whom the decisions apply. In practice, however, there are also ADs written and signed by legal proxies (surrogates) on behalf of patients who lack decision-making capacity. Given their practical relevance and substantial ethical and legal implications, ADs b...

Context The will to live (WTL) is an important indicator of subjective well-being. It may enable a deeper understanding of the well-being of nursing home residents. Objectives To evaluate the intensity of WTL, its association with various factors, and its temporal evolution among residents ≥ 65 years old; we also aimed to compare it with proxy ass...

Switzerland has the longest history of non-medicalized assistance in dying, considered as a civil right even beyond pathological situations. The debate in Switzerland centers on the notion of suffering in the context of PAD. In 2018, the Swiss Academy of Medical Sciences revised their end-of-life policy stipulating intolerable suffering due to seve...

Background: End of life symptoms and symptom management as well as the quality of dying (QoD) of persons with advanced dementia (PWAD) have not yet been systematically studied in Germany. Objective: 1) To investigate symptoms, treatment and care at the end of life, advance care planning, and circumstances of death of recently deceased PWAD; 2) T...

Research conducted on Brain-Computer Interfaces (BCIs) has grown considerably during the last decades. With the help of BCIs, users can (re)gain a wide range of functions. Our aim in this paper is to analyze the impact of BCIs on autonomy. To this end, we introduce three abilities that most accounts of autonomy take to be essential: (1) the ability...

Background: Advance care planning (ACP) is particularly appropriate for persons with dementia (PWD) since it fosters conversation about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients’ observed behaviour, emphasises prospective and relational autonomy, and may be generally consistent to elderly...

Involuntary psychiatric hospitalization for suicide prevention and physician assistance in dying (PAD) for patients with severe and persistent mental illness (SPMI) combine to create a moral tension. Switzerland has the longest history of non-medicalized assistance in dying, considered as a civil right even beyond pathological situations. The debat...

Objectives: Treatment decisions following severe acute brain injury need to consider patients' goals-of-care and long-term outcomes. Using family members as respondents, we aimed to assess patients' goals-of-care in the ICU and explore the impact of adaptation on survivors who did not reach the level of recovery initially considered acceptable. D...

Background Discussing patient preferences for cardio‐pulmonary resuscitation (CPR) is routine in hospital admission for older people. The way the conversation is conducted plays an important role for patient comprehension and the ethics of decision making. Objective The objective was to examine how CPR is explained in geriatric rehabilitation hosp...

Artificial intelligence and brain-computer interfaces are two novel technologies that have numerous potential areas of application in medicine. They raise, however, significant ethical implications that call for reflection and discussion before deciding about the use of these kinds of applications. In this chapter, I present some examples of these...

Brain-Computer Interfaces (BCIs) use the power of thoughts. They detect brain activity to control external devices such as neuro-prostheses or personal computers. The goal of this study was to explore the experiences of healthy persons using BCIs in various applications. Based on maximum variation sampling, 24 qualitative interviews were conducted...

Our recent publication in Neuroethics re-constructed the perspectives of family caregivers of patients with disorders of consciousness (DOC) on functional neurodiagnostics (Schembs et al., Neuroethics, 2020). Two papers criticized some of our methodological decisions (Peterson, Neuroethics, 2020; Andersen et al., Neuroethics, 2020) and commented on...

Background: Advanced stages of dementia are characterized by severe cognitive and physical impairment. It has not yet been investigated whether persons with young onset dementia (YOD) and late onset dementia (LOD) differ in advanced disease stages. Objectives: To compare quality of life (QoL) between persons with advanced YOD and LOD; to explore...

Background: According to the European Association for Palliative Care, decisions regarding palliative sedation should not be made in response to a request for death. However, several studies show that continuous deep sedation until death (CDSUD) – a particular form of sedation – has been considered as an alternative to active assisted dying in some...

Decision-making capacity (DMC) in aging adults has become increasingly salient as the number of older adults, life expectancy, and the amount of wealth to be transferred from older generations have all increased. The accurate and reliable determination of older adults’ DMC is a particularly important topic given its implication in legal, financial,...