Moral decision-making

Ever since my student days and training as a cultural psychologist I have been fascinated by the effects of cultural and social conditions on people’s individual conduct. These can be particularly strong on patients, who often have to make difficult moral decisions in a setting that is highly colored by the medical and cultural context – not necessarily to their advantage. As a researcher I have analyzed the extent to which modern medical practice really observes the principle of individual freedom and respects patients’ autonomy in a range of different settings.

Infertility and genetics

Given this fascination I contributed to two books on unwanted childlessness, at a time when the issue was rarely discussed openly. I edited Stil Verdriet – Een egodocument over ongewenste kinderloosheid [Silent Grief – A personal account of unwanted childlessness] (Disseldorp, 1994). In collaboration with social worker Emmelie van Asten I wrote the book Stoppen of Doorgaan – omgaan met ongewenste kinderloosheid (1996) [Stopping or Carrying on – Coping with unwanted childlessness].
In the late 1990s I conducted a research project into the social impact of genetics, a burgeoning field at the time. I studied the interaction between genetics and society in terms of the concept of ‘geneticization’, which we introduced to Dutch readers. Along with research journalist André Kalden I wrote the book Ons Gescreende Lichaam – kansen en risico’s van de genetica(1999), [Our Screened Body – opportunities and pitfalls of the new genetics], which was discussed in detail in various periodicals.

Prenatal diagnosis

My choice of PhD project was inspired by a concern about the fact that prenatal diagnosis regularly produces results other than the most familiar one of trisomy 21 (leading to Down’s syndrome). This raises the question of what is the best way to deal with results of this kind, which almost always come as an unpleasant surprise to parents, in practice.
My thesis was concerned principally with the value of what were then new testing methods that could largely prevent what are referred to as ‘unexpected findings’. Based on this research, the recommendation to professionals involved was to stop and consider the – ethical – question of what they themselves regard as the purpose of prenatal diagnosis. This is explained in concise form in this article (in Dutch; abstract in English).

Professional responsibility

Calling on professionals to focus more closely on their own responsibility is a recurrent theme in my work. In my research, I have been constantly looking for ways of giving substance to this professional responsibility, especially in direct dealings with patients who face difficult decisions. My PhD research clearly demonstrated the complexity and dynamism of the decision-making process in everyday practice and its potential consequences in terms of everyone's responsibilities. Detailed observations of how the results of prenatal diagnosis are handled – from lab tests to the discussion of results with parents – revealed that it is by no means always clear who is responsible for producing the definitive result. Moreover, patients were sometimes obliged to take responsibility at often quite inopportune moments, in view of their inherently vulnerable situation. The importance of properly sharing out the responsibilities in complicated decision-making processes is explored in this article and the chapter "Constructing results in prenatal diagnosis: beyond technological testing and moral decision-making" (2008 - see Publications).

MIMES-model for moral counseling

Professionals themselves also search for effective ways of broaching morally sensitive issues in discussions with patients. The reticence that some care providers cite in this context as being due to a perceived risk of moralizing is not a concern I share. In this interview (in Dutch), I explain how raising moral issues is something quite distinct from moralizing.
The importance of not understating the moral sensitivity of the kind of decisions that arise in prenatal diagnosis is developed further in the MIMES consultation model (see Innovations in Education). Other key components in this model are reflection on the purpose of the consultation, reflection on one's own, constantly changing, role, deciding on the appropriate consultation techniques and assessing whether one should explain this role to the patient. This chapter of the Medical Psychology handbook (Medische Psychologie, in Dutch) explains how to recognize an ethical issue and details the situations in which the MIMES model can be applied most effectively.

Shared Decision-making (SDM)

My study into genetic counseling greatly increased my understanding of the doctor-patient relationship. What once seemed to be a highly specific form of consultation ultimately served as my prototype for the doctor-patient relationship in a morally sensitive context. This means that insights gained through genetic counseling can be applied much more widely, as was shown in this review article. In it, we concluded that patient interaction in genetics has much in common with that in other medical settings.
In the same review, we noted that shared decision-making is increasingly seen as the ideal scenario for all parties involved. This is also reflected in the recent report (in Dutch) issued by the Netherlands Council for Public Health (Raad voor Volksgezondheid, RVZ). This includes an assessment of what is required in order to enable shared decision-making to be more widely applied in healthcare practice. This advisory document, for which I also provided input as a member of the consultative group, includes the following recommendation: “Doctors must be trained in shared decision-making. They must be taught to clearly identify moments during treatment when decisions must be made (...) and to determine what role the patient is willing and able to play in the healthcare process and when.” (p. 53 and 65)
The MIMES model is based on this combination of reflection and counseling skills. Through The Good Worker, we offer the MIMES consultation training for all types of medical professionals who wish to fully meet the demands of their professional responsibility in order to provide optimum care for their patients who face morally sensitive decisions.