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Background: Team-based palliative care interventions have shown positive results for patients at the end of life in both hospital and community settings. However, evidence on the effectiveness of transmural, that is, spanning hospital and home, team-based palliative care collaborations is limited. Aim: To systematically review whether transmural team-based palliative care interventions can prevent hospital admissions and increase death at home. Design: Systematic review and meta-analysis. Data sources: MEDLINE (Ovid), Embase (Ovid), CINAHL (Ebsco), PsychINFO (Ovid), and Cochrane Library (Wiley) were systematically searched until January 2021. Studies incorporating teams in which hospital and community professionals co-managed patients, hospital-based teams with community follow-up, and case-management interventions led by palliative care teams were included. Data was extracted by two researchers independently. Results: About 19 studies were included involving 6614 patients, of whom 2202 received an intervention. The overall pooled odds ratio of at least one hospital (re)admissions was 0.46 (95% confidence interval (CI) 0.34–0.68) in favor of the intervention group. The highest reduction in admission was in the hospital-based teams with community follow-up: OR 0.21 (95% CI 0.07–0.66). The pooled effect on home deaths was 2.19 (95% CI 1.26–3.79), favoring the intervention, with also the highest in the hospital-based teams: OR 4.77 (95% CI 1.23–18.47). However, studies had high heterogeneity regarding intervention, study population, and follow-up time. Conclusion: Transmural team-based palliative care interventions, especially hospital-based teams that follow-up patients at home, show an overall effect on lowering hospital admissions and increasing the number of patients dying at home. However, broad clinical and statistical heterogeneity of included studies results in uncertainty about the effect size. more...

Purpose: Intensive care is a stressful environment in which team-family conflicts commonly occur. If managed poorly, conflicts can have negative effects on all parties involved. Previous studies mainly investigated these conflicts and their management in a retrospective way. This study aimed to prospectively explore team-family conflicts, including its main topics, complicating factors, doctors’ conflict management strategies and the effect of these strategies. Methods: Conversations between doctors in the neonatal, pediatric, and adult intensive care unit of a large university-based hospital and families of critically ill patients were audio-recorded from the moment doubts arose whether treatment was still in patients’ best interest. Transcripts were coded and analyzed using a qualitative deductive approach. Results: Team-family conflicts occurred in 29 out of 101 conversations (29%) concerning 20 out of 36 patients (56%). Conflicts mostly concerned more than one topic. We identified four complicating context- and/or family-related factors: diagnostic and prognostic uncertainty, families’ strong negative emotions, limited health literacy, and burden of responsibility. Doctors used four overarching strategies to manage conflicts, namely content-oriented, process-oriented, moral and empathic strategies. Doctors mostly used content-oriented strategies, independent of the intensive care setting. They were able to effectively address conflicts in most conversations. Yet, if they did not acknowledge families’ cues indicating the existence of one or more complicating factors, conflicts were likely to linger on during the conversation. Conclusion: This study underlines the importance of doctors tailoring their communication strategies to the concrete conflict topic(s) and to the context- and family-related factors which complicate a specific conflict. more...

Purpose: In intensive care units (ICUs), decisions about the continuation or discontinuation of life-sustaining treatment (LST) are made on a daily basis. Professional guidelines recommend an open exchange of standpoints and underlying arguments between doctors and families to arrive at the most appropriate decision. Yet, it is still largely unknown how doctors and families argue in real-life conversations. This study aimed to (1) identify which arguments doctors and families use in support of standpoints to continue or discontinue LST, (2) investigate how doctors and families structure their arguments, and (3) explore how their argumentative practices unfold during conversations. Method: A qualitative inductive thematic analysis of 101 audio-recorded conversations between doctors and families. Results: Seventy-one doctors and the families of 36 patients from the neonatal, pediatric, and adult ICU (respectively, N-ICU, P-ICU, and A-ICU) of a large university-based hospital participated. In almost all conversations, doctors were the first to argue and families followed, thereby either countering the doctor’s line of argumentation or substantiating it. Arguments put forward by doctors and families fell under one of ten main types. The types of arguments presented by families largely overlapped with those presented by doctors. A real exchange of arguments occurred in a minority of conversations and was generally quite brief in the sense that not all possible arguments were presented and then discussed together. Conclusion: This study offers a detailed insight in the argumentation practices of doctors and families, which can help doctors to have a sharper eye for the arguments put forward by doctors and families and to offer room for true deliberation. more...

Background: The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method: We interviewed 27 parents of persons with PIMD and analysed the data thematically, to explore parents’ concerns about being outlived by their child. Results: Most parents hoped to outlive their child with PIMD and related this to the expectation of a decreased quality of life (QoL) of their child, when they would have passed away. The uncertainty about who would fulfil their parental roles in the future contributed to parents’ concerns and sometimes resulted in feelings of despair. Conclusions: Our study provides insight into the nature and gravity of parents’ concerns. The division of parents’ concerns into roles helps to address future care and support gaps for people with PIMD. more...

Physician-assisted death for patients suffering from psychiatric disorders is allowed in the Netherlands under certain circumstances. One of the central problems that arise with regard to this practice is the question of whether it is possible to distinguish between suicidality and a request for physician-assisted death. We set up this study to gain insight into how psychiatrists and general practitioners distinguish between suicidality and physician-assisted death. The data for this study were collected through qualitative interviews with 20 general practitioners and 17 psychiatrists in the Netherlands. From the interviews, we conclude that physicians distinguish three types of death wishes among patients suffering from psychiatric disorders: ‘impulsive suicidality,’ ‘chronic suicidality,’ and ‘rational death wishes.’ To discern between them they evaluate whether the death wish is seen as part of the psychopathology, whether it is consistent over time, and whether they consider it treatable. Some considered physician-assisted death an alternative to a ‘rational suicide,’ as this was perceived to be a more humane manner of death for the patient and their relatives. We argue that physician-assisted death can be justified also in some cases in which the death wish is part of the psychopathology, as the patient’s suffering can be unbearable and irremediable. Physician-assisted death in these cases may remain the only option left to relieve the suffering. more...

Persons with profound intellectual and multiple disabilities (PIMD) cannot speak about their Quality of Life (QoL), which makes it necessary to involve others. In current approaches, these ‘others’ are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers’ knowledge on the QoL of a person with PIMD a theoretical basis that values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers’ experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. more...

Background Parents’ knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge. Method We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies. Results Parents’ knowledge was based on their long‐lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well‐being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge. Conclusions Suggestions are made on how to apply and retain parents’ knowledge to improve care and support for people with PIMD. more...

Contains fulltext : 248234.pdf (Publisher’s version ) (Open Access) AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71 physicians. The end-of-life decisions mainly concern decisions to withhold or withdraw life-sustaining treatment. RESULTS: The importance of taking sufficient time and exchanging clear, neutral and relevant information was main facilitators expressed by both parents and physicians. Lack of time, uncertain information and changing doctors were seen as important barriers by both parties. Most facilitators and barriers could be seen as two sides of the same coin, but not always. For example, some parents and physicians considered the fact that parents hold strong opinions as a barrier while others considered this a facilitator. Furthermore, parents and physicians showed differences. Parents especially underlined the importance of physician-related facilitators, such as a personalised approach, empathy and trust. On the contrary, physicians underlined the importance of the child's visible deterioration and parents' awareness of the seriousness of their child's condition and prognosis as facilitators of EoLDM. CONCLUSIONS: This study gained insight into what parents and physicians experience as the main barriers and facilitators in EoLDM for neonates and children. more...

The objective of this study is to describe and evaluate understandings of dignity of persons with profound intellectual and multiple disabilities. Intrinsic dignity cannot be lost and is inherent to being a human. Also, dignity is the extent to which these persons have enough positive experiences (individual dignity), have dignity in their relationships with familiar others (relational dignity), or with unknown others (societal dignity). While intrinsic dignity sometimes fails to include experiences of these persons and their family members, the other understandings are gradual, which means that these persons can lose their dignity. The understandings express a concern: the life of the person with severe disabilities is, respectively, worth respecting, living, sharing and caring about. We conclude that they can have dignity and that, in case of disagreement, it is important to clarify which dignity is meant and to make explicit the concerns at stake. Points of interest A mother stated, ‘My son has lost his dignity,’ while other parents assert that their child, like any other human being, cannot lose his dignity. The paper clarifies these differences between understandings of dignity. In this study, four understandings of dignity of persons with profound intellectual and multiple disabilities are evaluated. This means that their strengths and limitations are described. Parents and others, referring to dignity of persons with severe disabilities, want to express a concern, this paper argues. They want to make clear that the lives of these persons are worth respecting, living, sharing or caring about. Parents, health care professionals or others who disagree on dignity of a person with severe disabilities, this article concludes, should open themselves up for the other’s concerns. While their concerns may differ, they are both obviously concerned about this person, which is the starting point for providing good care and support. more...

At the height of the COVID-19 crisis in the Netherlands a shortness of intensive care beds was looming. Dutch professional medical organizations asked a group of ethicists for assistance in drafting guidelines and criteria for selection of patients for intensive care (IC) treatment in case of absolute scarcity, when medical selection criteria would no longer suffice. This article describes the Dutch context, the process of drafting the advice and reflects on the role of ethicists and lessons learned. We argue that timely interaction between clinical and ethical expertise is necessary since the distinction between medical and non-medical considerations is not as clearcut as sometimes assumed. Furthermore, pragmatic considerations related to the specifics of an epidemic are of importance, for example, in relation to prioritizing health care workers. As a consequence, any protocol already present before the pandemic would need alterations to fit the current situation. The ‘fair innings’ criterion we proposed, rephrased as an argument of intergenerational solidarity, was considered reasonable by professionals as well as patient organizations. While it is desirable to draft ethical guidelines in ‘peacetime’ as a matter of pandemic preparedness, the pressure of an actual crisis facilitates decision-making, although it will also complicate a more democratic approach. more...

Prevention enthusiasts show great optimism about the potential of health apps to modify peoples’ lifestyles through the tracking and quantification of behaviours and bodily signs. Critical sociologists warn for the disciplining effects of self‐tracking. In this paper we use an empirical ethics approach to study the characteristics and strivings of the various types of ‘ethico‐psychological subjects’ that emerge in practices of self‐quantification by analysing how people and numbers relate in three cases of self‐quantification: in prevention discourse, in testimonies from the quantified self (QS) movement and in empirical work we did with people with Diabetes type I and with ‘every day self‐trackers’. We show that a free subject that needs support to enact its will is crucial to understand the optimism about prevention. In the QS‐movement the concern is with a lack of objective and personalised knowledge about imperceptible processes in the body. These subjects are decentered and multiplied when we trace how numbers in their turn act to make sense of people in our empirical study. We conclude that there are many different types of ethico‐psychological subjects in practices of self‐tracking that need to be explored in order to establish what good these practices of self‐quantification might do. more...

The answer to the question which phenomena should be seen as a disease changes over the course of history. This article discusses, on the basis of the historical development of the concepts of arthritis and arthrosis, that the painful joint conditions that we now call 'arthrosis' have been viewed, and - importantly - treated, over the past 150 years, as both aging versus disease, and as systemic versus local. The specialists who were most involved - rheumatologists and orthopedic surgeons - followed different explanatory models and scenarios for treatment. Over the course of the 20th century, arthrosis emerged as an independent clinical entity, which some concluded may be the result of a normal aging process. This discussion leads to the idea that diseases do not have an essence separate from diagnostic and therapeutic practices. more...

IntroductionSudden cardiac death (SCD) is the leading cause of death in patients with myocardial infarction (MI) and can be prevented by the implantable cardioverter defibrillator (ICD). Currently, risk stratification for SCD and decision on ICD implantation are based solely on impaired left ventricular ejection fraction (LVEF). However, this strategy leads to over- and under-treatment of patients because LVEF alone is insufficient for accurate assessment of prognosis. Thus, there is a need for better risk stratification. This is the study protocol for developing and validating a prediction model for risk of SCD in patients with prior MI.Methods and AnalysisThe EU funded PROFID project will analyse 23 datasets from Europe, Israel and the US (∼225,000 observations). The datasets include patients with prior MI or ischemic cardiomyopathy with reduced LVEFEthics and disseminationLocal ethical approval was obtained. The final model will be disseminated through scientific publications and a web-calculator. Statistical code will be published through open-source repositories. more...

Physician-assisted death (PAD) for patients suffering from a mental illness is allowed in the Netherlands under certain conditions but is a very controversial topic, mainly discussed by ethicists and physicians. The voice of the patient is rarely included in the debate, so we know little about what their views on the topic are. We aim to understand the views of patients with mental illness and wish to die with regard to the possibility of PAD in the Netherlands. The data for this qualitative study were collected through 21 in-depth interviews with Dutch patients who have a wish for PAD as a result of suffering from a mental illness. We identified four themes in relation to the meaning of PAD for the patients suffering from mental illness and wish to die. These themes are (1) Autonomy and self-determination, (2) ending the suffering, (3) recognition, and (4) a dignified end-of-life. The option of PAD for patients suffering from mental illnesses was considered of great importance to the patients who have a wish to die. We highlight the importance of ‘recognition’ for the situation of the patient, as this could lead to new perspective. We argue that psychiatrists need to reflect on providing this recognition in earlier phases of treatment, taking seriously and discussing a wish for PAD in treatment is beneficial to patients. It provides space for the patient to discuss their wishes and could cause them not wanting to die anymore. more...

BackgroundA key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients.MethodsTwenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically.ResultsThe dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients’ dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient’s wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient’s preferences and help preserve the patient’s dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver’s dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient’s dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life.ConclusionThe dignity of migrant patients’ informal caregivers in the last phase of a patient’s life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role. more...

Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings’ role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically. Results: While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future. Conclusions: Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents’ and siblings’ views regarding an expected future burden. more...

Rationale, aims, and objectives The way in which care providers describe incapacitated elderly people is not without implications. The different ways in which they describe their patients-client, patient, or a sick human being-have consequences for their relationships with these patients and the decision-making processes. The aim of this study is to use insights from complexity thinking to understand the dynamic relations between various patient descriptions in decision-making. Method We conducted a retrospective qualitative empirical study. Health care professionals were interviewed on how their decisions with the families of the patients were made during the course of the patients' illness. Transcriptions of interviews with physicians, residential practitioners, nurses, and head nurses were made regarding their contribution to the decision-making process. Methodologies of complexity thinkers can be helpful to not articulate the implications of individual patient descriptions, but also their interrelationships. Results Instead of reducing their patients with the logic of the market to clients or with the logic of medicine to patients, health care providers learn in an emergent dialogic encounter to care for them as sick persons. Conclusions Shared-decision-making favours the involvement of patients and their families in decision-making. However, due to a domination of the logic of the market and the logic of medicine, decision-making is problematic. As professional mediators, health care providers learn, however, to balance client demands, medical perspectives, and embodied dialogic care in decision-making for voiceless patients. more...

Wanneer onderzoekers patientgegevens uit de huisartsen-praktijk willen gebruiken zijn er juridisch gezien twee mogelijkheden. Vanuit het oogpunt van privacy is de meest wenselijke dat een patient daarvoor uitdrukkelijk toestemming geeft. Dit hoeft geen probleem te zijn wanneer de behandelaar geregeld contact heeft met de patient en deze gemakkelijk om toestemming kan vragen. Die situatie zal echter eerder uitzondering dan regel zijn. In dat geval is het mogelijk om van het toestemmingsvereiste af te wijken. Dit is alleen gerechtvaardigd wanneer het vragen van toestemming redelijkerwijs niet mogelijk is of niet kan worden verlangd. Maar dan gelden wel enkele randvoorwaarden. more...

Background Few older people benefit from advance care planning (ACP), due to several barriers related to primary care professionals, such as insufficient knowledge, negative beliefs and a lack of time. Information on overcoming these barriers is limited. We assumed primary care professionals experienced in ACP with older patients are likely to have learned how to overcome these barriers. Objective To investigate how Dutch primary care professionals experienced in ACP with older patients overcome these barriers. Methods A qualitative study, based on semi-structured interviews, among a purposive sample of 14 Dutch primary care professionals experienced in ACP with older people. Transcripts were thematically analysed. Results We interviewed eight general practitioners (GPs), three nurses and three elderly care physicians, experienced in ACP with older people. Respondents overcame their own insufficient knowledge and skills, as well as their negative attitudes and beliefs by gaining experience through practicing ACP in their daily practices, exchanging and reflecting on those experiences with peers, pursuing continuing education, teaching and participating in research. To overcome patients' and families' lack of initiative and openness to ACP, respondents prepared them for further steps in ACP. To overcome a lack of time, respondents used tools and information communication technology, delegated parts of ACP to other primary care professionals, acquired financing and systematized documentation of ACP. Conclusion Primary care professionals can overcome barriers to ACP with older patients by practicing, reflecting on experiences and pursuing continuing education, by preparing patients and involving family and by investing in support to approach ACP more efficiently. more...

Background End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple disabilities (PIMD) remains unknown. Aims To determine which elements contribute to QoL according to parents and physicians, how QoL is incorporated into EoLDM and how parents and physicians discuss QoL considerations in the Netherlands. Methods Semi-structured interviews were conducted with the physicians and parents of 14 children with PIMD for whom an EoLD had been made within the past two years. Results Parents and physicians agreed on the main elements that contribute to QoL in children with PIMD. The way in which QoL was incorporated differed slightly for different types of decisions. Parents and physicians rarely discussed elements contributing to the child’s QoL when making EoLDS. Conclusions and Implications Although QoL was highly important during EoLDM for children with PIMD, parents and physicians did not fully explore the elements that contribute to the child’s QoL when they made EoLDs. We recommend the development of a communication tool that will help parents and physicians discuss elements that contribute to QoL and the consequences these elements have for upcoming decisions. more...

Background: The objective of this study was to provide an overview of concepts, methods of assessment and assessors in empirical studies on quality of life (QoL) of persons with Profound Intellectual and Multiple Disabilities (PIMD). Method: A narrative literature review was conducted by searching electronic databases until December 2016, and the included studies were then analysed thematically. Results: Twenty-one articles were included in the analysis. Multidimensional concepts of QoL consisting of both subjective and objective components were found, although the articles used different distinctions for each. QoL was assessed by behavioural observations or interviews/questionnaires. Family members, primary caregivers and more distant observers (or a combination of these three) determined QoL. Triangulation of assessors and methodological pluralism were used. Conclusions: This review highlighted several components of QoL in persons with PIMD, as well as challenges in researching the QoL of persons who are not able to express themselves verbally. The distinction between objective and subjective QoL was difficult to clarify, with interpretation being both inevitable and necessary. Although triangulation is seen to be good practice in QoL assessment, the role of proxies in assessing the QoL of persons with PIMD needs further investigation. more...

Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They ‘sensed’ QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers. more...

BackgroundBreaking bad news should be fine-tuned to the individual patient, contain intelligible information, include emotional support and offer a tailor-made treatment plan. To achieve this goal in motor neuron disease (MND), neurologists of the amyotrophic lateral sclerosis (ALS) centre Amsterdam deliver the message on 2 separate visits within 14 days.AimTo evaluate how patients with MND react to and view disclosure of the diagnosis, in this 2-tiered approach.MethodsNon-participating observations and in-depth interviews with patients were conducted in 1 tertiary ALS referral centre. Qualitative analysis consisted of inductive analysis of observation reports and verbatim typed out interviews.Results10 2-tiered appointments were observed and 21 Dutch patients with MND interviewed. They experienced the straightforward message to be suffering from a fatal disease as devastating, yet unavoidable. The prospect of a short-term second appointment offered structure for the period immediately following the diagnosis. The time between appointments provided the opportunity for a first reorientation on their changed perspective on their life. The second appointment allowed for detailed discussions about various aspects of MND and a tailor-made treatment plan.ConclusionsThe 2-tiered approach fits well with the way in which Dutch patients with MND process the disclosure of their diagnosis, gather information and handle the changed perspective on their life. It may serve as a model for other life-limiting diseases. more...

Background: End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions. Aims: The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD. Methods: In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years. Results: A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept. Conclusion: The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD. (C) Elsevier Ltd. All rights reserved. more...

BackgroundSince the enactment of the euthanasia law in the Netherlands, there has been a lively public debate on assisted dying that may influence the way patients talk about euthanasia and physician-assisted suicide (EAS) with their physicians and the way physicians experience the practice of EAS.AimTo show what developments physicians see in practice and how they perceive the influence of the public debate on the practice of EAS.MethodsWe conducted a secondary analysis of in-depth interviews with 28 Dutch physicians who had experience with a complex case of EAS. Respondents were recruited both by the network of physicians working for SCEN (Support and Consultation for Euthanasia in the Netherlands) as well as via a national questionnaire, wherein participating physicians could indicate their willingness to be interviewed.ResultsThree themes came up in analysing the interviews. First, the interviewed physicians experienced a change in what (family of) patients would expect from them: from a role as an involved caregiver to being the mere performer of EAS. Second, interviewees said that requests for EAS based on non-medical reasons came up more frequently and wondered if EAS was the right solution for these requests. Last, respondents had the impression that the standards of EAS are shifting and that the boundaries of the EAS regulation were stretched.ConclusionsThe perceived developments could make physicians less willing to consider a request for EAS. Our results also raise questions about the role of physicians and of EAS in society. more...

In deze inleiding wordt duidelijk waarom ethiek in de zorg tegenwoordig zoveel aandacht krijgt: dat heeft vooral te maken met toenemende complexiteit. Klassieke en nieuwere problemen passeren de revue om de breedte van het veld van de ethiek van de zorg te laten zien: begin en einde van het leven, wils(on)bekwaamheid, en beroepsgeheim worden hier tot de klassieke problemen gerekend, keuzen in de zorg, vragen rond preventie, het internet en de informalisering tot de nieuwere. Deze bijdrage geeft een korte weergave van twee vormen van moreel beraad die goed bruikbaar zijn voor groepen huisartsen: een dilemmamethode en een hermeneutische benadering. De een gericht op het oplossen van een specifiek patientgebonden probleem, de ander op het bespreken van kernwaarden van de zorg. more...

Beleid om de leefstijl van burgers gezonder te maken ontketent een stevig ethisch debat. Eerst analyseren we de discussie over de vraag of het beinvloeden van de leefstijl van burgers met het doel hen gezonder te maken (‘leefstijlbeinvloeding’) een voorbeeld is van onwenselijke betutteling, of dat het nalaten daarvan juist verwaarlozing is. De eerste mogelijke rechtvaardiging voor leefstijlbeinvloeding luidt: ‘Als het te beinvloeden gedrag derden schaadt, dan is beinvloeding ervan acceptabel.’ De tweede mogelijke rechtvaardiging luidt: ‘Het stimuleren van gezond gedrag kan acceptabel zijn, omdat het tegenwicht biedt aan allerlei prikkels die ongezond gedrag bevorderen.’ Het gewicht dat wordt toegekend aan voorgaande argumenten om leefstijlbeinvloeding te rechtvaardigen, hangt samen met de mate waarin de autonomie of vrijheid onder druk komt te staan. Vervolgens beschrijven we de discussie over het differentieren in premies: ‘Is het wenselijk dat mensen met een ongezonde leefstijl meer premie moeten afdragen voor de basiszorgverzekering?’ We belichten drie argumenten om premiedifferentiatie in te voeren. Het eerste motief is preventie: een hogere premie bij ongezond gedrag en een lagere premie bij gezond gedrag zou mensen prikkelen tot gezond gedrag. Het tweede motief dat voorstanders van premiedifferentiatie naar voren brengen is, dat dit voor een rechtvaardiger verdeling van kosten zorgt. Het derde motief voor premiedifferentiatie in de zorgverzekeringspremies is het idee dat dit de solidariteit zou bevorderen. We belichten de veronderstellingen bij deze argumenten vanuit een kritisch perspectief. Ten slotte bespreken we de relevantie van deze debatten voor de huisartsenpraktijk. Mensen hebben recht op goede informatie over de voorwaarden voor een goede gezondheid. Bovendien is een huisarts op basis van haar of zijn rol bij uitstek geschikt om mensen te helpen motiveren om gezonder te leven. Om dit echter op een effectieve manier te doen, is het belangrijk zich bewust te zijn van de maatschappelijke context en van de toon die het debat soms aanneemt. more...