Rien Janssens

Palliative sedation: not just normal medical practice. Ethical reflections on the Royal Dutch Medical Association's guideline on palliative sedation

The main premise of the Royal Dutch Medical Associations (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guidelines argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guidelines main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of the guideline that are used to support this premise: (1) the patients life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline.

Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results in relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice.

Continuous sedation until death: the everyday moral reasoning of physicians, nurses and family caregivers in the UK, The Netherlands and Belgium

BackgroundContinuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress.MethodsThis study is an international qualitative interview study involving interviews with physicians, nurses, and relatives of deceased patients in the UK, The Netherlands and Belgium (the UNBIASED study) about a case of continuous sedation at the end of life they were recently involved in. All interviews were transcribed verbatim and analysed by staying close to the data using open coding. Next, codes were combined into larger themes and categories of codes resulting in a four point scheme that captured all of the data. Finally, our findings were compared with others and explored in relation to theories in ethics and sociology.ResultsThe participants’ responses can be captured as different dimensions of ‘closeness’, i.e. the degree to which one feels connected or ‘close’ to a certain decision or event. We distinguished four types of ‘closeness’, namely emotional, physical, decisional, and causal. Using these four dimensions of ‘closeness’ it became possible to describe how physicians, nurses, and relatives experience their involvement in cases of continuous sedation until death. More specifically, it shined a light on the everyday moral reasoning employed by care providers and relatives in the context of continuous sedation, and how this affected the emotional impact of being involved in sedation, as well as the perception of their own moral responsibility.ConclusionFindings from this study demonstrate that various factors are reported to influence the degree of closeness to continuous sedation (and thus the extent to which carers feel morally responsible), and that some of these factors help care providers and relatives to distinguish continuous sedation from euthanasia.

The language of sedation in end-of-life care: The ethical reasoning of care providers in three countries.

The application of ethically controversial medical procedures may differ from one place to another. Drawing on a keyword and text-mining analysis of 156 interviews with doctors and nurses involved in end-of-life care (‘care providers’), differences between countries in care providers’ ethical rationales for the use of sedation are reported. In the United Kingdom, an emphasis on titrating doses proportionately against symptoms is more likely, maintaining consciousness where possible. The potential harms of sedation are perceived to be the potential hastening of social as well as biological death. In Belgium and the Netherlands, although there is concern to distinguish the practice from euthanasia, rapid inducement of deep unconsciousness is more acceptable to care providers. This is often perceived to be a proportionate response to unbearable suffering in a context where there is also greater pressure to hasten dying from relatives and others. This means that sedation is more likely to be organised like euthanasia, as the end ‘moment’ is reached, and family farewells are organised before the patient is made unconscious for ever. Medical and nursing practices are partly responses to factors outside the place of care, such as legislation and public sentiment. Dutch guidelines for sedation largely tally with the practices prevalent in the Netherlands and Belgium, in contrast with those produced by the more international European Association for Palliative Care whose authors describe an ethical framework closer to that reportedly used by UK care providers.

Physicians' experiences and perspectives regarding the use of continuous sedation until death for cancer patients in the context of psychological and existential suffering at the end of life

The use of continuous sedation until death for terminally ill cancer patients with unbearable and untreatable psychological and existential suffering remains controversial, and little in‐depth insight exists into the circumstances in which physicians resort to it.

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians

PurposePalliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services.MethodsFifty-four physicians were interviewed on their most recent case of palliative sedation.ResultsReasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physicians responsibility and deterring physicians from applying palliative sedation.ConclusionConsultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.

A case study of haemoglobinopathy screening in the Netherlands: witnessing the past, lessons for the future

Objectives. In 2007 neonatal screening (NNS) was expanded to include screening for sickle cell disease (SCD) and beta-thalassaemia. Up until that year no formal recommendations for haemoglobinopathy (carrier) screening existed in the Netherlands. Although it has been subject to debate in the past, preconceptional and prenatal haemoglobinopathy carrier screening are not part of routine healthcare in the Netherlands. This study aimed to explore the decision-making process of the past: why was the introduction of a screening programme for haemoglobinopathy considered to be untimely, and did ethnicity play a role given the history in other countries surrounding the introduction of haemoglobinopathy screening? Design. A witness seminar was organised, inviting key figures to discuss the decision-making process concerning haemoglobinopathy screening in the Netherlands, thereby adding new perspectives on past events. The transcript was content-analysed. Results. The subject of haemoglobinopathy screening first appeared in the 1970s. As opposed to a long history of neglect of African-American health in the United States, the heritage of the Second World War influenced the decision-making process in the Netherlands. As a consequence, registration of ethnicity surfaced as an impeding factor. However, overall, official Dutch screening policy was restrained regarding reproductive issues caused by fear of eugenics. In the 1990s haemoglobinopathy screening was found to be ‘not opportune’ due to low prevalence, lack of knowledge and fear of stigmatisation. Currently the registration of ethnicity remains on the political agenda, but still proves to be a sensitive subject. Discussion. Carrier screening in general never appeared high on the policy agenda. Registration of ethnicity remains sensitive caused by the current political climate. Complexities related to carrier screening are a challenge in Dutch healthcare. Whether carrier screening will be considered a valuable complementary strategy in the Netherlands, depends partly on participation of representatives of high-risk groups in policy making.

Ethical considerations of worksite health promotion: an exploration of stakeholders’ views

BackgroundDeveloping, implementing and evaluating worksite health promotion requires dealing with all stakeholders involved, such as employers, employees, occupational physicians, insurance companies, providers, labour unions and research and knowledge institutes. Although worksite health promotion is becoming more common, empirical research on ethical considerations of worksite health promotion is scarce.MethodsWe explored the views of stakeholders involved in worksite health promotion in focus group discussions and we described the ethical considerations that result from differences between these views. The focus group discussions were organised per stakeholder group. Data were analysed according to the constant comparison method.ResultsOur analyses show that although the definition of occupational health is the same for all stakeholders, namely ‘being able to perform your job’, there seem to be important differences in the views on what constitutes a risk factor to occupational health. According to the employees, risk factors to occupational health are prevailingly job-related. Labour unions agree with them, but other stakeholders, including the employer, particularly see employee-related issues such as lifestyle behaviour as risk factors to occupational health. The difference in definition of occupational health risk factors translates into the same categorisation of worksite health promotion; employee-related activities and work-related activities. The difference in conceptualisation of occupational health risk factors and worksite health promotion resonates in the way stakeholders understand ‘responsibility’ for lifestyle behaviour. Even though all stakeholders agree on whose responsibility lifestyle behaviour is, namely that of the employee, the meaning of ‘responsibility’ differs between employees, and employers. For employees, responsibility means autonomy, while for employers and other stakeholders, responsibility equals duty. This difference may in turn contribute to ambivalent relationships between stakeholders.ConclusionAll stakeholders, including employees, should be given a voice in developing, implementing and evaluating worksite health promotion. Moreover, since stakeholders agree on lifestyle being the responsibility of the employee, but disagree on what this responsibility means (duty versus autonomy), it is of utmost importance to examine the discourse of stakeholders. This way, ambivalence in relationships between stakeholders could be prevented.