Marian A Verkerk | University of Groningen (original) (raw)
Books by Marian A Verkerk
Huisartsen krijgen in hun rol als gezins- en familiearts te maken met uiteenlopende morele dilemm... more Huisartsen krijgen in hun rol als gezins- en familiearts te maken met uiteenlopende morele dilemma’s. De driehoeksverhouding ‘arts – patiënt – familieleden’ roept in de dagelijkse praktijk veelvuldig vragen op. Artsen, juristen en ethici benader en deze doorgaans verschillend.
Dit boek presenteert vijfentwintig ‘familiezaken’ steeds gevolgd door een drietal commentaren van respectievelijk een huisarts, een jurist en een ethicus. Vragen die daarbij aan de orde komen zijn onder meer : Waar begint en eindigt de verantwoordelijkheid van de huisarts ten opzichte van de patiënt en zijn relationele context? Wat zijn de mogelijkheden en beperkingen van het gezondheidsrecht als het gaat om de betrokkenheid van familieleden bij de individuele arts-patiëntrelatie? Uit de beantwoording blijkt dat huisartsen onderling veelvuldig tot verschillende beslissingen komen, net zo goed als juristen het recht uiteenlopend interpreteren en ethici andere accenten leggen bij het stellen van hun vragen.
‘Huisarts tussen individu en familie’ zoekt antwoorden op genoemde en andere ethische vragen. Daarmee levert het een bijdrage aan de discussie r ondom de vraag ‘wat is goed hulpverlenerschap’, en draagt het bij aan meer begrip tussen de betrokken disciplines. De uitgave is geschreven voor (huis)artsen, (gezondheids)juristen en ethici, en allen die daar voor in opleiding zijn. Ten behoeve van het onderwijs, nascholing en cursussen bevat dit boek een apart hoofdstuk met concrete suggesties voor het gebruik van de aangeboden casuïstiek.
Dr. Wouter de Ruijter is huisarts in Rotterdam en hoofd van de huisartsopleiding van het LUMC te Leiden. Prof.mr. Aart Hendriks is hoogleraar gezondheidsrecht aan de Universiteit Leiden/LUMC en coördinator gezondheidsrecht bij de KNMG te Utrecht. Prof.dr. Marian Verkerk is hoogleraar zorgethiek aan het UMCG te Groningen.
De ouderengeneeskunde is een tak van de geneeskunde die zich van oudsher richt op het samenspel v... more De ouderengeneeskunde is een tak van de geneeskunde die zich van oudsher richt op het samenspel van bij het ouder worden optredende ziekten en de gevolgen daarvan: complexe multimorbiditeit. Complex staat daarbij zowel voor samengesteld als voor ingewikkeld. De ouderenarts heeft namelijk niet alleen te maken met de oudere zelf, maar ook met het hem of haar ‘omringende’ zorgsysteem. Deze zogeheten triadische zorgrelatie kan zowel in diagnostische als in therapeutische zin aanleiding geven tot morele problemen.
Dit boek presenteert vijfentwintig ‘ouderenzaken’, steeds gevolgd door een drietal commentaren van respectievelijk een ouderenarts, een jurist en een ethicus. Het merendeel van deze casus heeft in meer of mindere mate betrekking op het complexe karakter van de zorg en de dilemma’s die het hanteren van een triadische zorgrelatie met zich mee kan brengen. Vragen die daarbij aan bod komen zijn ondermeer: Wat is goede medische zorg hier? Welke verantwoordelijkheid heeft de arts bijvoorbeeld voor de mantelzorger die ten koste van alles zijn demente echtgenote thuis wil blijven verzorgen? Mag hij ingrijpen als die zorg door overbelasting naar professionele normen ontspoort en hoe dan?
De uitgave is geschreven voor ouderenartsen, (gezondheids)juristen en ethici, en allen die daar voor in opleiding zijn. Ten behoeve van het onderwijs, nascholing en cursussen is een apart hoofdstuk opgenomen met concrete suggesties voor het gebruik van de aangeboden casuïstiek.
Prof. dr Cees Hertogh is hoogleraar ouderengeneeskunde & ethiek van de zorg aan het
VUmc te Amsterdam.
Prof. mr. Aart Hendriks is hoogleraar gezondheidsrecht aan de Universiteit Leiden/LUMC en coördinator gezondheidsrecht bij de KNMG te Utrecht.
Prof. dr. Marian Verkerk is hoogleraar zorgethiek aan het UMCG te Groningen.
Naturalized Bioethics represents a revolutionary change in how health care ethics is practiced. I... more Naturalized Bioethics represents a revolutionary change in how health care ethics is practiced. It calls for bioethicists to give up their dependence on utilitarianism and other ideal moral theories and instead to move toward a self-reflexive, socially inquisitive, politically critical, and inclusive ethics. Wary of idealizations that bypass social realities, the naturalism in ethics that is developed in this volume is empirically nourished and acutely aware that ethical theory is the practice of particular people in particular times, places, cultures, and professional environments. The essays in this collection examine the variety of embodied experiences of individual people. They situate the bioethicist within the clinical or research context, take seriously the web of relationships in which all human beings are nested, and explore a number of the many different kinds of power relations that inform health care encounters. Naturalized Bioethics aims to help bioethicists, doctors, nurses, allied health professionals, disability studies scholars, medical researchers, and other health professionals address the ethical issues surrounding health care.
Case Analysis in Clinical Ethics is an eclectic review from a team of leading ethicists covering ... more Case Analysis in Clinical Ethics is an eclectic review from a team of leading ethicists covering the main methods for analysing ethical problems in modern medicine. Anneke Lucassen, a clinician, begins by presenting an ethically challenging genetics case drawn from her clinical experience. It is then analysed from different theoretical points of view. Each ethicist takes a particular approach, illustrating it in action and giving the reader a basic grounding in its central elements. Each chapter can be read on its own, but comparison between them gives the reader a sense of how far methodology in medical ethics matters, and how different theoretical starting points can lead to different practical conclusions. At the end, Anneke Lucassen gives a clinician’s response to the various ethical methods described. Practising clinical ethicists and students on upper level undergraduate and Master's degree courses in medical ethics and applied philosophy will find this invaluable
Papers by Marian A Verkerk
What About the Family?
In this chapter a moral case is made for family care. Two arguments are put forward in defense of... more In this chapter a moral case is made for family care. Two arguments are put forward in defense of this position: first, there is a moral familial responsibility and second, in taking care of a family member, a certain social good is derived that cannot be obtained otherwise. Family can be understood as a caring practice in which special responsibilities are distributed and negotiated. While family relationships count, the history of that relationship and the particulars of the situation also count in determining the moral weight of responsibilities that we have toward each other. If and how we have a particular responsibility toward a family member depends on the moral shape of the situation. Political and social considerations, such as considerations of justice and equity, are also part of this moral shape. The practice of assigning responsibilities is only intelligible against the background of existing practices and the normative expectations arising from them—practices that them...
European Journal of Pediatrics, 2014
Alleviation of suffering is considered to be one of the important goals of medical interventions.... more Alleviation of suffering is considered to be one of the important goals of medical interventions. Understanding of what constitutes suffering in children admitted to a pediatric intensive care unit (PICU) is lacking. This study aims to assess perceptions by parents, doctors, and nurses of suffering in critically ill children. We interviewed 124 participants (parents, physicians, and PICU nurses) caring for 29 admitted children in a 20-bed level-III PICU and performed a qualitative analysis. We found that most participants made a distinction between physical and existential suffering. Parents considered the child's suffering caused by or associated with visible signs as discomfort. Nurses linked suffering to the child's state of comfort. Physicians linked them to the intensity and impact of treatment and future perspectives of the child. Various aspects of the child's suffering and admission to a PICU caused suffering in parents. Conclusion: Parents', physicians', and nurses' perceptions of suffering overlap but also show important differences. Differences found seem to be rooted in the relation to and kind of responsibility (parental/professional) for the child. The child's illness, suffering, and hospital admission cause suffering in parents. Health-care professionals in PICUs need to be aware of these phenomena.
Abstract. In this article I wish to show how care ethics puts forward a fundamental critique on t... more Abstract. In this article I wish to show how care ethics puts forward a fundamental critique on the ideal of independency in human life without thereby discounting autonomy as a moral value altogether. In care ethics, a relational account of autonomy is developed instead. Because care ethics is sometimes criticized in the literature as hopelessly vague and ambiguous, I shall begin by elaborating on how care ethics and its place in ethical theory can be understood. I shall stipulate a definition of care ethics as a moral perspective or orientation from which ethical theorizing can take place. This will mean that care ethics is more a stance from which we can theorize ethically, than ready-made theory in itself. In conceiving care ethics in this way, it becomes possible to make clear that, for instance, a moral concept of autonomy is not abandoned, but instead is given a particular place and interpretation. In the final part of this article I will show how ’relational autonomy ’ can b...
Huisartsen krijgen in hun rol als gezins- en familiearts te maken met uiteenlopende morele dilemm... more Huisartsen krijgen in hun rol als gezins- en familiearts te maken met uiteenlopende morele dilemma’s. De driehoeksverhouding ‘arts – patiënt – familieleden’ roept in de dagelijkse praktijk veelvuldig vragen op. Artsen, juristen en ethici benader en deze doorgaans verschillend. Dit boek presenteert vijfentwintig ‘familiezaken’ steeds gevolgd door een drietal commentaren van respectievelijk een huisarts, een jurist en een ethicus. Vragen die daarbij aan de orde komen zijn onder meer : Waar begint en eindigt de verantwoordelijkheid van de huisarts ten opzichte van de patiënt en zijn relationele context? Wat zijn de mogelijkheden en beperkingen van het gezondheidsrecht als het gaat om de betrokkenheid van familieleden bij de individuele arts-patiëntrelatie? Uit de beantwoording blijkt dat huisartsen onderling veelvuldig tot verschillende beslissingen komen, net zo goed als juristen het recht uiteenlopend interpreteren en ethici andere accenten leggen bij het stellen van hun vragen. ‘Huisarts tussen individu en familie’ zoekt antwoorden op genoemde en andere ethische vragen. Daarmee levert het een bijdrage aan de discussie r ondom de vraag ‘wat is goed hulpverlenerschap’, en draagt het bij aan meer begrip tussen de betrokken disciplines. De uitgave is geschreven voor (huis)artsen, (gezondheids)juristen en ethici, en allen die daar voor in opleiding zijn. Ten behoeve van het onderwijs, nascholing en cursussen bevat dit boek een apart hoofdstuk met concrete suggesties voor het gebruik van de aangeboden casuïstiek. Dr. Wouter de Ruijter is huisarts in Rotterdam en hoofd van de huisartsopleiding van het LUMC te Leiden. Prof.mr. Aart Hendriks is hoogleraar gezondheidsrecht aan de Universiteit Leiden/LUMC en coördinator gezondheidsrecht bij de KNMG te Utrecht. Prof.dr. Marian Verkerk is hoogleraar zorgethiek aan het UMCG te Groningen.
European journal of human genetics : EJHG, Jan 7, 2015
We explored the dilemma between patients' right not to know their genetic status and the effi... more We explored the dilemma between patients' right not to know their genetic status and the efficient use of health-care resources in the form of clinical cancer screening programmes. Currently, in the Netherlands, 50% risk carriers of heritable cancer syndromes who choose not to know their genetic status have access to the same screening programmes as proven mutation carriers. This implies an inefficient use of health-care resources, because half of this group will not carry the familial mutation. At the moment, only a small number of patients are involved; however, the expanding possibilities for genetic risk profiling means this issue must be addressed because of potentially adverse societal and financial impact. The trade-off between patients' right not to know their genetic status and efficient use of health-care resources was discussed in six focus groups with health-care professionals and patients from three Dutch university hospitals. Professionals prefer patients to un...
Journal of Medical Ethics, 2014
Recent developments in professional healthcare pose moral problems that standard bioethics cannot... more Recent developments in professional healthcare pose moral problems that standard bioethics cannot even identify as problems, but that are fully visible when redefined as problems in the ethics of families. Here, we add to the growing body of work that began in the 1990 s by demonstrating the need for a distinctive ethics of families. First, we discuss what 'family' means and why families can matter so deeply to the lives of those within them. Then, we briefly sketch how, according to an ethics of families, responsibilities must be negotiated against the backdrop of family relationships, treatment decisions must be made in the light of these negotiated responsibilities and justice must be served, both between families and society more generally and within families themselves.
Journal of Medical Ethics, 2007
Residency training in the Netherlands is to be restructured over the coming years. To this end a ... more Residency training in the Netherlands is to be restructured over the coming years. To this end a general competence profile for medical specialists has been introduced. This profile is nearly the same as the Canadian CanMEDS 2000 model, which describes seven general areas of medical specialist competence, one of which is professionalism. In order to establish a training programme for residents and their instructors based on this competence, it is necessary to develop a vision that does justice to everyday medical practice. The two most prevailing views of professionalism-as personal, or as a behavioural characteristic-fall short of this. Only when professionalism is understood as reflective professionalism does it encompass the fundamental contextuality of medical treatment. This means that the focus of training and assessment must be shifted to accountability for treatment.
Philosophy and Medicine, 2020
In clinical practice, patients are much more relational embedded than we think and in common anal... more In clinical practice, patients are much more relational embedded than we think and in common analysis of issues in medical ethics that tend to be conducted from an individual moral perspective. Patients live in relation with each other, call it a family, kinship or whatever. If we are to give credit to these relational moral experiences, then we require a theoretical relational perspective. In this chapter I will argue that when thinking about moral decisions at the end of life, we need to take a family ethical perspective. Families matter, and they matter when it comes to end of life decisions. Families are often intensely involved caring for their family member at the end of life, and rightly so. At the same time, their involvement raises some serious moral questions, three of which I will discuss: (1) respect of autonomy of the patient, (2) the meaning of suffering and (3) issues on justice in family care.
In an age of global capitalism, pandemics, far-flung biobanks, multinational drug trials and tele... more In an age of global capitalism, pandemics, far-flung biobanks, multinational drug trials and telemedicine it is impossible for bioethicists to ignore the global dimensions of their field. However, if they are to do good work on the issues that globalisation requires of them, they need theoretical resources that are up to the task. This paper identifies four distinct understandings of ‘globalised’ in the bioethics literature: (1) a focus on global issues; (2) an attempt to develop a universal ethical theory that can transcend cultural differences; (3) an awareness of how bioethics itself has expanded, with new centres and journals emerging in nearly every corner of the globe; (4) a concern to avoid cultural imperialism in encounters with other societies. Each of these approaches to globalisation has some merit, as will be shown. The difficulty with them is that the standard theoretical tools on which they rely are not designed for cross-cultural ethical reflection. As a result, they ...
In this article I wish to show how care ethics puts forward a fundamental critique on the ideal o... more In this article I wish to show how care ethics puts forward a fundamental critique on the ideal of independency in human life without thereby discounting autonomy as a moral value altogether. In care ethics, a relational account of autonomy is developed instead. Because care ethics is sometimes criticized in the literature as hopelessly vague and ambiguous, I shall begin by elaborating on how care ethics and its place in ethical theory can be understood. I shall stipulate a definition of care ethics as a moral perspective or orientation from which ethical theorizing can take place. This will mean that care ethics is more a stance from which we can theorize ethically, than ready-made theory in itself. In conceiving care ethics in this way, it becomes possible to make clear that, for instance, a moral concept of autonomy is not abandoned, but instead is given a particular place and interpretation. In the final part of this article I will show how 'relational autonomy' can be a...
Prenatal Diagnosis
Background: Expanded carrier screening (ECS) is aimed at detecting carrier states for autosomal r... more Background: Expanded carrier screening (ECS) is aimed at detecting carrier states for autosomal recessive (AR) or X-linked conditions in couples from the general population planning a pregnancy. ECS is currently usually offered on an individual basis despite the fact that, for AR conditions, only carrier couples are at risk of affected offspring. In this paper, we present a couple-based ECS test-offer for AR conditions, where results are offered as couple-results only, and describe how couples view such an offer. Methods and results: An online survey covering attitudes, perceived difficulty, and intention to take up couple-based ECS was used to examine couples' views. Results show that in 76% of the participating couples there is no objection at all towards receiving couple-results only. Most couples display similar views. Observed discrepancies usually involved one of the couple members having a positive view, whilst the other was neutral. Although views stayed strikingly stable after discussion, the partner's opinion was regarded as important in deciding whether or not to have testing. Conclusion: This study shows that most couples do not object to receiving couple rather than individual ECS results, have similar views towards the offer, and are able to discuss differences in views and intentions. 1 | INTRODUCTION Expanded carrier screening (ECS) has become widely available. 1-5 It is aimed at detecting carrier states for autosomal recessive (AR) or Xlinked conditions in couples from the general population planning a pregnancy, with the aim to enhance reproductive choice. Several studies have demonstrated the contribution of ECS to this aim. 6-8 Currently, ECS is usually offered on individual basis, and individual carrier states are reported. This individual-based approach stems historically from offering preconception or premarital carrier screening to high-risk groups. Examples are the offer of Tay Sachs disease screening to Ashkenazi Jews 9 or other populations with high prior risk of individuals being carriers. 10 We believe that the sequential screening and reporting of individual carrier states that has been common
BMJ quality & safety, Jan 13, 2018
European journal of human genetics : EJHG, Jun 1, 2017
Next-generation sequencing enabled us to create a population-based expanded carrier screening (EC... more Next-generation sequencing enabled us to create a population-based expanded carrier screening (ECS) test that simultaneously tests for 50 serious autosomal recessive diseases. Before offering this test universally, we wanted to know what factors are related to intended participation and how the general public can be informed about the test without being influenced in their intention to participate. We studied this by measuring to what extent 'message framing' and 'narrative information' can influence people's intended participation. Data were collected by means of an online survey of 504 potential users, and the factors examined were based on the Theory of Planned Behaviour and on previous research on intended participation in preconception carrier screening. Message framing was manipulated by explaining the risk of couple carriership in different ways, while narrative information was provided to only half of the respondents. The factors most positively related t...
Huisartsen krijgen in hun rol als gezins- en familiearts te maken met uiteenlopende morele dilemm... more Huisartsen krijgen in hun rol als gezins- en familiearts te maken met uiteenlopende morele dilemma’s. De driehoeksverhouding ‘arts – patiënt – familieleden’ roept in de dagelijkse praktijk veelvuldig vragen op. Artsen, juristen en ethici benader en deze doorgaans verschillend.
Dit boek presenteert vijfentwintig ‘familiezaken’ steeds gevolgd door een drietal commentaren van respectievelijk een huisarts, een jurist en een ethicus. Vragen die daarbij aan de orde komen zijn onder meer : Waar begint en eindigt de verantwoordelijkheid van de huisarts ten opzichte van de patiënt en zijn relationele context? Wat zijn de mogelijkheden en beperkingen van het gezondheidsrecht als het gaat om de betrokkenheid van familieleden bij de individuele arts-patiëntrelatie? Uit de beantwoording blijkt dat huisartsen onderling veelvuldig tot verschillende beslissingen komen, net zo goed als juristen het recht uiteenlopend interpreteren en ethici andere accenten leggen bij het stellen van hun vragen.
‘Huisarts tussen individu en familie’ zoekt antwoorden op genoemde en andere ethische vragen. Daarmee levert het een bijdrage aan de discussie r ondom de vraag ‘wat is goed hulpverlenerschap’, en draagt het bij aan meer begrip tussen de betrokken disciplines. De uitgave is geschreven voor (huis)artsen, (gezondheids)juristen en ethici, en allen die daar voor in opleiding zijn. Ten behoeve van het onderwijs, nascholing en cursussen bevat dit boek een apart hoofdstuk met concrete suggesties voor het gebruik van de aangeboden casuïstiek.
Dr. Wouter de Ruijter is huisarts in Rotterdam en hoofd van de huisartsopleiding van het LUMC te Leiden. Prof.mr. Aart Hendriks is hoogleraar gezondheidsrecht aan de Universiteit Leiden/LUMC en coördinator gezondheidsrecht bij de KNMG te Utrecht. Prof.dr. Marian Verkerk is hoogleraar zorgethiek aan het UMCG te Groningen.
De ouderengeneeskunde is een tak van de geneeskunde die zich van oudsher richt op het samenspel v... more De ouderengeneeskunde is een tak van de geneeskunde die zich van oudsher richt op het samenspel van bij het ouder worden optredende ziekten en de gevolgen daarvan: complexe multimorbiditeit. Complex staat daarbij zowel voor samengesteld als voor ingewikkeld. De ouderenarts heeft namelijk niet alleen te maken met de oudere zelf, maar ook met het hem of haar ‘omringende’ zorgsysteem. Deze zogeheten triadische zorgrelatie kan zowel in diagnostische als in therapeutische zin aanleiding geven tot morele problemen.
Dit boek presenteert vijfentwintig ‘ouderenzaken’, steeds gevolgd door een drietal commentaren van respectievelijk een ouderenarts, een jurist en een ethicus. Het merendeel van deze casus heeft in meer of mindere mate betrekking op het complexe karakter van de zorg en de dilemma’s die het hanteren van een triadische zorgrelatie met zich mee kan brengen. Vragen die daarbij aan bod komen zijn ondermeer: Wat is goede medische zorg hier? Welke verantwoordelijkheid heeft de arts bijvoorbeeld voor de mantelzorger die ten koste van alles zijn demente echtgenote thuis wil blijven verzorgen? Mag hij ingrijpen als die zorg door overbelasting naar professionele normen ontspoort en hoe dan?
De uitgave is geschreven voor ouderenartsen, (gezondheids)juristen en ethici, en allen die daar voor in opleiding zijn. Ten behoeve van het onderwijs, nascholing en cursussen is een apart hoofdstuk opgenomen met concrete suggesties voor het gebruik van de aangeboden casuïstiek.
Prof. dr Cees Hertogh is hoogleraar ouderengeneeskunde & ethiek van de zorg aan het
VUmc te Amsterdam.
Prof. mr. Aart Hendriks is hoogleraar gezondheidsrecht aan de Universiteit Leiden/LUMC en coördinator gezondheidsrecht bij de KNMG te Utrecht.
Prof. dr. Marian Verkerk is hoogleraar zorgethiek aan het UMCG te Groningen.
Naturalized Bioethics represents a revolutionary change in how health care ethics is practiced. I... more Naturalized Bioethics represents a revolutionary change in how health care ethics is practiced. It calls for bioethicists to give up their dependence on utilitarianism and other ideal moral theories and instead to move toward a self-reflexive, socially inquisitive, politically critical, and inclusive ethics. Wary of idealizations that bypass social realities, the naturalism in ethics that is developed in this volume is empirically nourished and acutely aware that ethical theory is the practice of particular people in particular times, places, cultures, and professional environments. The essays in this collection examine the variety of embodied experiences of individual people. They situate the bioethicist within the clinical or research context, take seriously the web of relationships in which all human beings are nested, and explore a number of the many different kinds of power relations that inform health care encounters. Naturalized Bioethics aims to help bioethicists, doctors, nurses, allied health professionals, disability studies scholars, medical researchers, and other health professionals address the ethical issues surrounding health care.
Case Analysis in Clinical Ethics is an eclectic review from a team of leading ethicists covering ... more Case Analysis in Clinical Ethics is an eclectic review from a team of leading ethicists covering the main methods for analysing ethical problems in modern medicine. Anneke Lucassen, a clinician, begins by presenting an ethically challenging genetics case drawn from her clinical experience. It is then analysed from different theoretical points of view. Each ethicist takes a particular approach, illustrating it in action and giving the reader a basic grounding in its central elements. Each chapter can be read on its own, but comparison between them gives the reader a sense of how far methodology in medical ethics matters, and how different theoretical starting points can lead to different practical conclusions. At the end, Anneke Lucassen gives a clinician’s response to the various ethical methods described. Practising clinical ethicists and students on upper level undergraduate and Master's degree courses in medical ethics and applied philosophy will find this invaluable
What About the Family?
In this chapter a moral case is made for family care. Two arguments are put forward in defense of... more In this chapter a moral case is made for family care. Two arguments are put forward in defense of this position: first, there is a moral familial responsibility and second, in taking care of a family member, a certain social good is derived that cannot be obtained otherwise. Family can be understood as a caring practice in which special responsibilities are distributed and negotiated. While family relationships count, the history of that relationship and the particulars of the situation also count in determining the moral weight of responsibilities that we have toward each other. If and how we have a particular responsibility toward a family member depends on the moral shape of the situation. Political and social considerations, such as considerations of justice and equity, are also part of this moral shape. The practice of assigning responsibilities is only intelligible against the background of existing practices and the normative expectations arising from them—practices that them...
European Journal of Pediatrics, 2014
Alleviation of suffering is considered to be one of the important goals of medical interventions.... more Alleviation of suffering is considered to be one of the important goals of medical interventions. Understanding of what constitutes suffering in children admitted to a pediatric intensive care unit (PICU) is lacking. This study aims to assess perceptions by parents, doctors, and nurses of suffering in critically ill children. We interviewed 124 participants (parents, physicians, and PICU nurses) caring for 29 admitted children in a 20-bed level-III PICU and performed a qualitative analysis. We found that most participants made a distinction between physical and existential suffering. Parents considered the child's suffering caused by or associated with visible signs as discomfort. Nurses linked suffering to the child's state of comfort. Physicians linked them to the intensity and impact of treatment and future perspectives of the child. Various aspects of the child's suffering and admission to a PICU caused suffering in parents. Conclusion: Parents', physicians', and nurses' perceptions of suffering overlap but also show important differences. Differences found seem to be rooted in the relation to and kind of responsibility (parental/professional) for the child. The child's illness, suffering, and hospital admission cause suffering in parents. Health-care professionals in PICUs need to be aware of these phenomena.
Abstract. In this article I wish to show how care ethics puts forward a fundamental critique on t... more Abstract. In this article I wish to show how care ethics puts forward a fundamental critique on the ideal of independency in human life without thereby discounting autonomy as a moral value altogether. In care ethics, a relational account of autonomy is developed instead. Because care ethics is sometimes criticized in the literature as hopelessly vague and ambiguous, I shall begin by elaborating on how care ethics and its place in ethical theory can be understood. I shall stipulate a definition of care ethics as a moral perspective or orientation from which ethical theorizing can take place. This will mean that care ethics is more a stance from which we can theorize ethically, than ready-made theory in itself. In conceiving care ethics in this way, it becomes possible to make clear that, for instance, a moral concept of autonomy is not abandoned, but instead is given a particular place and interpretation. In the final part of this article I will show how ’relational autonomy ’ can b...
Huisartsen krijgen in hun rol als gezins- en familiearts te maken met uiteenlopende morele dilemm... more Huisartsen krijgen in hun rol als gezins- en familiearts te maken met uiteenlopende morele dilemma’s. De driehoeksverhouding ‘arts – patiënt – familieleden’ roept in de dagelijkse praktijk veelvuldig vragen op. Artsen, juristen en ethici benader en deze doorgaans verschillend. Dit boek presenteert vijfentwintig ‘familiezaken’ steeds gevolgd door een drietal commentaren van respectievelijk een huisarts, een jurist en een ethicus. Vragen die daarbij aan de orde komen zijn onder meer : Waar begint en eindigt de verantwoordelijkheid van de huisarts ten opzichte van de patiënt en zijn relationele context? Wat zijn de mogelijkheden en beperkingen van het gezondheidsrecht als het gaat om de betrokkenheid van familieleden bij de individuele arts-patiëntrelatie? Uit de beantwoording blijkt dat huisartsen onderling veelvuldig tot verschillende beslissingen komen, net zo goed als juristen het recht uiteenlopend interpreteren en ethici andere accenten leggen bij het stellen van hun vragen. ‘Huisarts tussen individu en familie’ zoekt antwoorden op genoemde en andere ethische vragen. Daarmee levert het een bijdrage aan de discussie r ondom de vraag ‘wat is goed hulpverlenerschap’, en draagt het bij aan meer begrip tussen de betrokken disciplines. De uitgave is geschreven voor (huis)artsen, (gezondheids)juristen en ethici, en allen die daar voor in opleiding zijn. Ten behoeve van het onderwijs, nascholing en cursussen bevat dit boek een apart hoofdstuk met concrete suggesties voor het gebruik van de aangeboden casuïstiek. Dr. Wouter de Ruijter is huisarts in Rotterdam en hoofd van de huisartsopleiding van het LUMC te Leiden. Prof.mr. Aart Hendriks is hoogleraar gezondheidsrecht aan de Universiteit Leiden/LUMC en coördinator gezondheidsrecht bij de KNMG te Utrecht. Prof.dr. Marian Verkerk is hoogleraar zorgethiek aan het UMCG te Groningen.
European journal of human genetics : EJHG, Jan 7, 2015
We explored the dilemma between patients' right not to know their genetic status and the effi... more We explored the dilemma between patients' right not to know their genetic status and the efficient use of health-care resources in the form of clinical cancer screening programmes. Currently, in the Netherlands, 50% risk carriers of heritable cancer syndromes who choose not to know their genetic status have access to the same screening programmes as proven mutation carriers. This implies an inefficient use of health-care resources, because half of this group will not carry the familial mutation. At the moment, only a small number of patients are involved; however, the expanding possibilities for genetic risk profiling means this issue must be addressed because of potentially adverse societal and financial impact. The trade-off between patients' right not to know their genetic status and efficient use of health-care resources was discussed in six focus groups with health-care professionals and patients from three Dutch university hospitals. Professionals prefer patients to un...
Journal of Medical Ethics, 2014
Recent developments in professional healthcare pose moral problems that standard bioethics cannot... more Recent developments in professional healthcare pose moral problems that standard bioethics cannot even identify as problems, but that are fully visible when redefined as problems in the ethics of families. Here, we add to the growing body of work that began in the 1990 s by demonstrating the need for a distinctive ethics of families. First, we discuss what 'family' means and why families can matter so deeply to the lives of those within them. Then, we briefly sketch how, according to an ethics of families, responsibilities must be negotiated against the backdrop of family relationships, treatment decisions must be made in the light of these negotiated responsibilities and justice must be served, both between families and society more generally and within families themselves.
Journal of Medical Ethics, 2007
Residency training in the Netherlands is to be restructured over the coming years. To this end a ... more Residency training in the Netherlands is to be restructured over the coming years. To this end a general competence profile for medical specialists has been introduced. This profile is nearly the same as the Canadian CanMEDS 2000 model, which describes seven general areas of medical specialist competence, one of which is professionalism. In order to establish a training programme for residents and their instructors based on this competence, it is necessary to develop a vision that does justice to everyday medical practice. The two most prevailing views of professionalism-as personal, or as a behavioural characteristic-fall short of this. Only when professionalism is understood as reflective professionalism does it encompass the fundamental contextuality of medical treatment. This means that the focus of training and assessment must be shifted to accountability for treatment.
Philosophy and Medicine, 2020
In clinical practice, patients are much more relational embedded than we think and in common anal... more In clinical practice, patients are much more relational embedded than we think and in common analysis of issues in medical ethics that tend to be conducted from an individual moral perspective. Patients live in relation with each other, call it a family, kinship or whatever. If we are to give credit to these relational moral experiences, then we require a theoretical relational perspective. In this chapter I will argue that when thinking about moral decisions at the end of life, we need to take a family ethical perspective. Families matter, and they matter when it comes to end of life decisions. Families are often intensely involved caring for their family member at the end of life, and rightly so. At the same time, their involvement raises some serious moral questions, three of which I will discuss: (1) respect of autonomy of the patient, (2) the meaning of suffering and (3) issues on justice in family care.
In an age of global capitalism, pandemics, far-flung biobanks, multinational drug trials and tele... more In an age of global capitalism, pandemics, far-flung biobanks, multinational drug trials and telemedicine it is impossible for bioethicists to ignore the global dimensions of their field. However, if they are to do good work on the issues that globalisation requires of them, they need theoretical resources that are up to the task. This paper identifies four distinct understandings of ‘globalised’ in the bioethics literature: (1) a focus on global issues; (2) an attempt to develop a universal ethical theory that can transcend cultural differences; (3) an awareness of how bioethics itself has expanded, with new centres and journals emerging in nearly every corner of the globe; (4) a concern to avoid cultural imperialism in encounters with other societies. Each of these approaches to globalisation has some merit, as will be shown. The difficulty with them is that the standard theoretical tools on which they rely are not designed for cross-cultural ethical reflection. As a result, they ...
In this article I wish to show how care ethics puts forward a fundamental critique on the ideal o... more In this article I wish to show how care ethics puts forward a fundamental critique on the ideal of independency in human life without thereby discounting autonomy as a moral value altogether. In care ethics, a relational account of autonomy is developed instead. Because care ethics is sometimes criticized in the literature as hopelessly vague and ambiguous, I shall begin by elaborating on how care ethics and its place in ethical theory can be understood. I shall stipulate a definition of care ethics as a moral perspective or orientation from which ethical theorizing can take place. This will mean that care ethics is more a stance from which we can theorize ethically, than ready-made theory in itself. In conceiving care ethics in this way, it becomes possible to make clear that, for instance, a moral concept of autonomy is not abandoned, but instead is given a particular place and interpretation. In the final part of this article I will show how 'relational autonomy' can be a...
Prenatal Diagnosis
Background: Expanded carrier screening (ECS) is aimed at detecting carrier states for autosomal r... more Background: Expanded carrier screening (ECS) is aimed at detecting carrier states for autosomal recessive (AR) or X-linked conditions in couples from the general population planning a pregnancy. ECS is currently usually offered on an individual basis despite the fact that, for AR conditions, only carrier couples are at risk of affected offspring. In this paper, we present a couple-based ECS test-offer for AR conditions, where results are offered as couple-results only, and describe how couples view such an offer. Methods and results: An online survey covering attitudes, perceived difficulty, and intention to take up couple-based ECS was used to examine couples' views. Results show that in 76% of the participating couples there is no objection at all towards receiving couple-results only. Most couples display similar views. Observed discrepancies usually involved one of the couple members having a positive view, whilst the other was neutral. Although views stayed strikingly stable after discussion, the partner's opinion was regarded as important in deciding whether or not to have testing. Conclusion: This study shows that most couples do not object to receiving couple rather than individual ECS results, have similar views towards the offer, and are able to discuss differences in views and intentions. 1 | INTRODUCTION Expanded carrier screening (ECS) has become widely available. 1-5 It is aimed at detecting carrier states for autosomal recessive (AR) or Xlinked conditions in couples from the general population planning a pregnancy, with the aim to enhance reproductive choice. Several studies have demonstrated the contribution of ECS to this aim. 6-8 Currently, ECS is usually offered on individual basis, and individual carrier states are reported. This individual-based approach stems historically from offering preconception or premarital carrier screening to high-risk groups. Examples are the offer of Tay Sachs disease screening to Ashkenazi Jews 9 or other populations with high prior risk of individuals being carriers. 10 We believe that the sequential screening and reporting of individual carrier states that has been common
BMJ quality & safety, Jan 13, 2018
European journal of human genetics : EJHG, Jun 1, 2017
Next-generation sequencing enabled us to create a population-based expanded carrier screening (EC... more Next-generation sequencing enabled us to create a population-based expanded carrier screening (ECS) test that simultaneously tests for 50 serious autosomal recessive diseases. Before offering this test universally, we wanted to know what factors are related to intended participation and how the general public can be informed about the test without being influenced in their intention to participate. We studied this by measuring to what extent 'message framing' and 'narrative information' can influence people's intended participation. Data were collected by means of an online survey of 504 potential users, and the factors examined were based on the Theory of Planned Behaviour and on previous research on intended participation in preconception carrier screening. Message framing was manipulated by explaining the risk of couple carriership in different ways, while narrative information was provided to only half of the respondents. The factors most positively related t...
Psychology Research and Behavior Management, Mar 10, 2009
In health care, relationships between patients or disabled persons and professionals are at least... more In health care, relationships between patients or disabled persons and professionals are at least co-constitutive for the quality of care. Many patients complain about the contacts and communication with caregivers and other professionals. From a care-ethical perspective a good patient-professional relationship requires a process of negotiation and shared understanding about mutual normative expectations. Mismatches between these expectations will lead to misunderstandings or conflicts. If caregivers listen to the narratives of identity of patients, and engage in a deliberative dialogue, they will better be able to attune their care to the needs of patients. We will illustrate this with the stories of three women with multiple sclerosis. Their narratives of identity differ from the narratives that caregivers and others use to understand and identify them. Since identities give rise to normative expectations in all three cases there is a conflict between what the women expect of their caregivers and vice-versa. These stories show that the quality of care, defined as doing the right thing, at the right time, in the right way, for the right person, is dependent on the quality of caring relationships.
Standardised health-related quality of life questionnaires play an increasing role as measures of... more Standardised health-related quality of life questionnaires play an increasing role as measures of outcome in the evaluation of health care interventions. However, problems can arise when the selected functions or dimensions of such standardised measures are not in line with the intervention that is the focus of the research. Furthermore, the subjective element of quality of life makes standardised questionnaires vulnerable to the coping mechanism, thereby decreasing their sensitivity. The capability approach of the economist and philosopher Amartya Sen oers a descriptive concept that contributes to a better understanding of these problems. This article provides an introduction to the ideas of Sen for researchers who wish to go beyond the traditional framework of measuring health-related quality of life.