In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences (...) of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions?In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self-justification and bias and can increase the credibility of the RE reached. (shrink)
BackgroundThis article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives.MethodsA content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision.ResultsThree themes were identified: ‘conditions’, ‘ethical considerations’ (...) and ‘look back’. Conditions were: ‘sense of urgency’, ‘incompetence to decide’ and ‘agreement between relatives’. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased’s body, especially when they do not know his/her preference. Donor families respect the deceased’s last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments. Some non-donor families would like to be supported during decision-making.DiscussionThe discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased’s wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families.ConclusionDiscrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation. (shrink)
BackgroundPediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians.MethodologyAn empirical ethical approach, combining a narrative review of qualitative studies on parents' and physicians' experiences of the pediatric oncology research practice, (...) and comparison of these experiences with existing theoretical ethical concepts about research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice.ResultsAnalysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician . True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents.ConclusionDue to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)
In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration. A content analysis of narratives of 24 bereaved relatives of unregistered, eligible, brain-dead donors was performed. Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned (...) afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures. Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death. (shrink)
Patients with a life-threatening illness can be confronted with various types of loneliness, one of which is existential loneliness (EL). Since the experience of EL is extremely disruptive, the issue of EL is relevant for the practice of end-of-life care. Still, the literature on EL has generated little discussion and empirical substantiation and has never been systematically reviewed. In order to systematically review the literature, we (1) identified the existential loneliness literature; (2) established an organising framework for the review; (3) (...) conducted a conceptual analysis of existential loneliness; and (4) discussed its relevance for end-of-life care. We found that the EL concept is profoundly unclear. Distinguishing between three dimensions of EL—as a condition, as an experience, and as a process of inner growth—leads to some conceptual clarification. Analysis of these dimensions on the basis of their respective key notions—everpresent, feeling, defence; death, awareness, difficult communication; and inner growth, giving meaning, authenticity—further clarifies the concept. Although none of the key notions are unambiguous, they may function as a starting point for the development of care strategies on EL at the end of life. (shrink)
Patients in a vegetative state/ unresponsive wakefulness syndrome pose ethical dilemmas to those involved. Many conflicts occur between professionals and families of these patients. In the Netherlands physicians are supposed to withdraw life sustaining treatment once recovery is not to be expected. Yet these patients have shown to survive sometimes for decades. The role of the families is thought to be important. The aim of this study was to make an inventory of the professional perspective on conflicts in long-term care (...) of patients in VS/UWS. A qualitative study of transcripts on 2 Moral Deliberations in 2 cases of patients in VS/UWS in long-term care facilities. Six themes emerged: 1) Vision on VS/UWS; 2) Treatment and care plan; 3) Impact on relationships; 4) Feelings/attitude; 5) Communication; 6) Organizational aspects. These themes are related to professionals and to what families had expressed to the professionals. We found conflicts as well as contradictory feelings and thoughts to be a general feature in 4 of these themes, both in professionals and families. Conflicts were found in several actors: within families concerning all 6 themes, in nurse teams concerning the theme treatment and care plan, and between physicians concerning all 6 themes. Different visions, different expectations and hope on recovery, deviating goals and contradictory feelings/thoughts in families and professionals can lead to conflicts over a patient with VS/UWS. Key factors to prevent or solve such conflicts are a carefully established diagnosis, clarity upon visions, uniformity in treatment goals and plans, an open and empathic communication, expertise and understanding the importance of contradictory feelings/thoughts. Management should bridge conflicts and support their staff, by developing expertise, by creating stability and by facilitating medical ethical discourses. Shared compassion for the patient might be a key to gain trust and bridge the differences from non-shared to shared decision making. (shrink)
It is not uncommon for patients with advanced disease to express a wish to hasten death. Qualitative studies of the WTHD have found that such a wish may have different meanings, none of which can be understood outside of the patient’s personal and sociocultural background, or which necessarily imply taking concrete steps to ending one’s life. The starting point for the present study was a previous systematic review of qualitative studies of the WTHD in advanced patients. Here we analyse in (...) greater detail the statements made by patients included in that review in order to examine their moral understandings and representations of illness, the dying process and death. We identify and discuss four classes of assumptions: assumptions related to patients’ moral understandings in terms of dignity, autonomy and authenticity; assumptions related to social interactions; assumptions related to the value of life; and assumptions related to medicalisation as an overarching context within which the WTHD is expressed. Our analysis shows how a philosophical perspective can add to an understanding of the WTHD by taking into account cultural and anthropological aspects of the phenomenon. We conclude that the knowledge gained through exploring patients’ experience and moral understandings in the end-of-life context may serve as the basis for care plans and interventions that can help them experience their final days as a meaningful period of life, restoring some sense of personal dignity in those patients who feel this has been lost. (shrink)
In spite of the seminal work A Philosophical Basis of Medical Practice, the debate on the task and goals of philosophy of medicine still continues. From an European perspective it is argued that the main topics dealt with by Pellegrino and Thomasma are still particularly relevant to medical practice as a healing practice, while expressing the need for a philosophy of medicine. Medical practice is a discursive practice which is highly influenced by other discursive practices like science, law and economics. (...) Philosophical analysis of those influences is needed to discern their effect on the goals of medicine and on the ways in which the self-image of man may be changed. The nature of medical practice and discourse itself makes it necessary to include different philosophical disciplines, like philosophy of science, of law, ethics, and epistemology. Possible scenario's of euthanasia and the human genome project in the USA and Europe are used to exemplify how philosopy of medicine can contribute to a realistic understanding of the problems which are related to the goals of medicine and health care. (shrink)
On April 10, 2001, after extensive committee deliberations, the Second Chamber of the Dutch Parliament passed a bill that was introduced in August 1999 legalizing physician-assisted death. The bill is officially called It was passed by a majority vote in the Second Chamber of Parliament and was supported by the majority parties constituting the present coalition government (i.e., liberals and socialists). Opposition to the law came mainly from a minority of Christian parties. In this report we explore the meaning of (...) this bill and describe some of its problematic and paradoxical items. (shrink)
The approach to AIDS as a disease and a threat for social discrimination is used as an example to illustrate a conceptual thesis. This thesis is a claim that concerns what we call a medical issue or not, what is medicalised or needs to be demedicalised. In the friction between medicalisation and demedicalisation as discursive strategies the latter approach can only be effected through the employment of discourses or discursive strategies other than medicine, such as those of the law and (...) of economics. These discourses each realise different values, promote a different subject, and have a different concept of man. The concept of discourse is briefly outlined against concepts such as the linear growth concept of science and the growth model of science as changes in paradigm. The issue of testing for AIDS shows a conflict between the medical and the legal discourse and illustrates the title of our contribution: the human body as field of conflict between discourses. (shrink)
Hospital ethics committees in The Netherlands have had the unique responsibility of developing euthanasia policies for their institutions. Although each policy necessarily reflects a particular facility, family resemblances necessarily remain. In the interest of ethics committees outside The Netherlands that may soon face the same challenge, two such policies are presented here accompanied by commentary high-lighting their similarities and differences.
Important bioethcs changes are underway in the Netherlands that carry, for better or worse, far-reaching social consequences. The two major areas of change involve economics and containing soaring health costs and end-of-life care as reflected in several high-profile cases: in a decision handed down by the Dutch Supreme Court on reviewing the procedures for the termination of life, in the discussion surrounding The Groningen Protocol and the active ending of lives in neonatology, and in a report of a Royal Dutch (...) Medical Society's Committee on the role of physicians in ending life in cases of requests to die outside the area of terminal diseases. (shrink)
The conceptualization of periods in history is surrounded by many problems. What does it mean to identify a period by giving it a name, such as the Middle Ages or the Enlightenment? When does a period begin and end? Have St. Thomas Aquinas and Abelard something in common because they lived in the same period? Or Locke, Rousseau, and Kant? These and similar questions are usually studied by historians. Different answers are given when different sets of criteria are applied. Schouls (...) uses three criteria to characterize the Enlightenment: freedom, mastery, and progress; three preoccupations which are joined together in the ideal of autonomy. Schouls applies the triad also to the philosophy of Descartes in order to find out whether or not that philosophy forms a part of the Enlightenment and its development. He analyzes the concepts of freedom, mastery, and progress in Descartes' philosophy and concludes that Descartes already articulated the triad and the corresponding ideal of autonomy. The eighteenth-century Enlightenment thinkers did little more than widely disseminate an inherited ideal. Instead of Bacon, Descartes has therefore to be considered as one of the principal founders of Enlightenment philosophy. (shrink)
In some respects this book can be considered as an elaboration of Clarke's earlier Descartes' Philosophy of Science. The latter work contains Clarke's analysis of the natural philosophy of Descartes with special attention to the role of experience and experiment in the formation and confirmation of theories. The present work focuses on the ways in which French philosophers and scientists tried to work out the general views of De l'Homme and the Principia during the period 1650-1700.
Omnia quae sunt, vel in se, vel in alio sunt. "Everything which is, is either in itself, or in something else." With regard to the history of philosophy the either\or in this first axiom of Spinoza's Ethics has to be read inclusively. The works of philosophers have to be studied in themselves, but also in the works of contemporaries, adherents, and opponents. Siebrand's investigation into the early reception of Spinoza's philosophy of religion should therefore be welcomed. There exists only scarce (...) material on the Dutch contemporaries of Spinoza. The study may therefore give further insights into the development of Spinoza's thinking as well as the general background of the problems which he so ardently tried to solve. This last objective can justify the approach which Siebrand chooses in the first part of his book, namely to discuss both the adherents and the opponents by using "the method of logical reconstruction, with emphasis on the reciprocal relations between their views on Spinozism and general philosophical and theological questions in the seventeenth century". A defense of this method is promised in the second part of the book by means of validating a theory of reception. (shrink)
Background: Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural palliative care is, however, largely lacking.This paper aims at describing elements of both the physical workplace and the cultural-social context of the palliative care practice, which are imperative for the use of teleconsultation technologies. Methods: A semi-structured expert meeting and qualitative, open interviews were deployed to explore (...) professionals’ assumptions and wishes, which are considered to contain latent presumptions about the practice’s physical workplace and latent elements of the cultural-social context, regarding (1) the mediating potential of audio-visual teleconsultation, (2) how the audio-visual teleconsultations will affect medical practice, and (3) the design and usage of the teleconsultation technology. We used a qualitative analysis to investigate how palliative care professionals interpret the teleconsultation package in preparation. The analysis entailed open and axial coding techniques developed in a grounded theory approach. Results: Respondents assume: 1. teleconsultation will hinder physical proximity, thereby compromising anamnesis and diagnosis of new or acutely ill patients as well as “real contact” with the person behind the patient; 2. teleconsultation will help patients becoming more of a pivotal figure in their own care trajectory; 3. they can use teleconsultation to keep a finger on the pulse; 4. teleconsultations have a healing effect of their own due to offered time and digital attention; 5. teleconsultation to open up an additional “gray” network outside the hierarchical structures of the established chain of transmural palliative care. This network could cause bypassing of caregivers and uncertainty about responsibilities; 6. teleconsultations lead to an extended flow of information which helps palliative care professionals to check the stories of patients and medical specialists. Conclusions: Professionals assume teleconsultation co-defines a new patient–professional relationship by extending hospital-based caregivers’ perceptions of as well as attention for their patients. At the cost, however, of clinical and personal connectedness. Secondly, a hermeneutics is needed to carefully interpret teleconsultation images. Thirdly, teleconsultations transform caregiving cultures as formerly separated care domains collide, demanding a redefinition of roles and responsibilities. (shrink)