Marian Verkerk

The care perspective and autonomy

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 applied fruitfully in the practice of psychiatric care.

Enhancing reflection. An interpersonal exercise in ethics education

There are no moral cookbooks--no algorithms for whipping up moral confections to suit every occasion. But more modest and flexible tools might still be useful for practical ethics. One team describes how professionals can be taught to use a framework for understanding moral problems.

Parental experience at the end-of-life in children with cancer: ‘preservation’ and ‘letting go’ in relation to loss

PurposeFor children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility.Participants and methodsA multicenter study using qualitative research was undertaken during the EoL phase. One-time and repeated open interviews were conducted with 44 parents of 23 children with incurable cancer.ResultsFeelings of loss play a prominent role during the EoL phase. Dealing with loss is a process of stepwise relinquishing that becomes manifest in an internal struggle between preservation and letting go. Preservation means that parents try to maintain the child’s status quo. Letting go means parents give up their resistance to loss in service of their child’s well-being. Although the relative measure of each changes over time, parents have great difficulty making the transition because it implies a change in source of control. A timely completion of this transition positively influences the child’s well-being as well as the evaluation of enacted parenthood.ConclusionFor parents the essence of the palliative process is not to accept death but to deal with the loss of their child. Although the need to avoid loss and gain control by means of preservation is fully understandable, the study indicated that parents who made the transition to letting go had an increased receptiveness of their child’s real situation and needs.

Development of a student rating scale to evaluate teachers’ competencies for facilitating reflective learning

Medical Education 2011: 45: 155–165

Health-related quality of life research and the capability approach of Amartya Sen

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 offers 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.

Case analysis in clinical ethics

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 clinicians response to the various ethical methods described.

Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature

Purpose:With rapid advances in genetic technologies, new genetic information becomes available much faster today than just a few years ago. This has raised questions about whether clinicians have a duty to recontact eligible patients when new genetic information becomes available and, if such duties exist, how they might be implemented in practice.Methods:We report the results of a systematic literature search on the ethical, legal, social (including psychological), and practical issues involved in recontacting former patients who received genetic services. We identified 1,428 articles, of which 61 are covered in this review.Results:The empirical evidence available indicates that most but not all patients value being recontacted. A minority of (older) articles conclude that recontacting should be a legal duty. Most authors consider recontacting to be ethically desirable but practically unfeasible. Various solutions to overcome these practical barriers have been proposed, involving efforts of laboratories, clinicians, and patients.Conclusion:To advance the discussion on implementing recontacting in clinical genetics, we suggest focusing on the question of in what situations recontacting might be regarded as good standard of care. To this end, reaching a professional consensus, obtaining more extensive empirical evidence, and developing professional guidelines are important.Genet Med 17 8, 668–678.

The role of peer meetings for professional development in health science education: a qualitative analysis of reflective essays.

Introduction The development of professional behaviour is an important objective for students in Health Sciences, with reflective skills being a basic condition for this development. Literature describes a variety of methods giving students opportunities and encouragement for reflection. Although the literature states that learning and working together in peer meetings fosters reflection, these findings are based on experienced professionals. We do not know whether participation in peer meetings also makes a positive contribution to the learning experiences of undergraduate students in terms of reflection. Aim The aim of this study is to gain an understanding of the role of peer meetings in students’ learning experiences regarding reflection. Method A phenomenographic qualitative study was undertaken. Students’ learning experiences in peer meetings were analyzed by investigating the learning reports in students’ portfolios. Data were coded using open coding. Results The results indicate that peer meetings created an interactive learning environment in which students learned about themselves, their skills and their abilities as novice professionals. Students also mentioned conditions for a well-functioning group. Conclusion The findings indicate that peer meetings foster the development of reflection skills as part of professional behaviour.

Population-based preconception carrier screening: how potential users from the general population view a test for 50 serious diseases

With the increased international focus on personalized health care and preventive medicine, next-generation sequencing (NGS) has substantially expanded the options for carrier screening of serious, recessively inherited diseases. NGS screening tests not only offer reproductive options not previously available to couples, but they may also ultimately reduce the number of children born with devastating disorders. To date, preconception carrier screening (PCS) has largely targeted single diseases such as cystic fibrosis, but NGS allows the testing of many genes or diseases simultaneously. We have developed an expanded NGS PCS test for couples; simultaneously it covers 50 very serious, early-onset, autosomal recessive diseases that are untreatable. This is the first, noncommercial, population-based, expanded PCS test to be offered prospectively to couples in a health-care setting in Europe. So far, little is known about how potential users view such a PCS test. We therefore performed an online survey in 2014 among 500 people from the target population in the Netherlands. We enquired about their intention to take an expanded PCS test if one was offered, and through which provider they would like to see it offered. One-third of the respondents said they would take such a test were it to be offered. The majority (44%) preferred the test to be offered via their general practitioner (GP) and 58% would be willing to pay for the test, with a median cost of [euro ]75. Our next step is to perform an implementation study in which this PCS test will be provided via selected GPs in the Northern Netherlands.

Reflective professionalism: interpreting CanMEDS' “professionalism”

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.