First a systematic literature search was conducted following the PRISMA Statement [3, 4] to study ECs in reproductive medicine, obstetrics and neonatology. Eligible records were identified by searching the following electronic databases: Pubmed, DIMDI, DRZE and Ethxweb using the keywords: ethics consultation, ethical dilemma, ethics case study, moral deliberation, reproductive medicine, obstetrics, pregnancy, abortion, infanticide, sanctity of life, neonatology, preterm infants (keywords were translated for German databases) for records published in English or German. Further eligibility criteria were any common features with the medical field specialties (reproductive medicine, obstetrics and neonatology) of our study in relation to ethical dilemma and clinical EC.
Sixty-two articles were initially selected by title or abstract and were screened again for eligibility. Records that concerned a very local problematic from a single nation differing strongly from Central European or Western context, were not included. Single case reports were also eliminated. This second screening round resulted in 24 records for which a full-text screening for eligibility was carried out leading to the exclusion of another 10 records for various reasons (e.g. “ethics” in the title or abstract with no further mentioning in the article itself) [5] . The full selection process is schematically shown in Fig. 1.
The main result of this literature search was that there were almost no records dealing with the selected topic. The full-text analysis of only 14 eligible records [5,6,7,8,9,10,11,12,13,14,15,16,17,18] revealed a picture of great diversity that is difficult to reduce to a common denominator. Topics range from the conflict between wishes of parents-to-be / patient autonomy on the one hand and a clinician’s intention to provide best medical care on the other, between non-maleficence and beneficence in reproductive medicine [6], over general overview of common ethical problems occurring in the pre-, peri- and postnatal period in obstetrics [8], to the ethical implications of prenatal diagnosis and the termination of the pregnancy by feticide. Because the results of our literature review were sparse and varied widely no meta-analysis was conducted.
Overall only 3 specific studies dealing with EC activity were identified. Tapper et al. analysed all ECs held in a teaching hospital over 3 years. Although this retrospective review is not specific to our field of interest, leaving reproductive medicine or neonatology unmentioned, this paper does hold some interesting findings about ECs in obstetrics. According to their study obstetrics is one of the services that required the most time-intensive consultations: “The ethical issues manifest in pregnancy are famously turbulent, (...)” [11]. Streuli et al. analysed 95 ECs held at the biggest Children’s Hospital in Switzerland and they state that EC “are interventions with possible side effects and should undergo follow-up research (…)”. In their population 17% of the cases were neonates. The most common issue was withdrawal or withholding of a specific treatment (44%). Also the parents’ wishes are well documented (mostly for maximum treatment; in 31% of the cases) [5]. A recent study analysed 100 CECs including a meeting and full documentation held in the somatic (USB) and the psychiatric (UPK) university hospitals, Basel, over 3 years. From the 50 USB-ECs 26% were requested by general gynaecologists. Prenatal and assisted reproduction conflicts (22%) were among the most frequently observed ethical issues [18]. These numbers from different institutions and studies all point toward the need of EC in this particular clinical area. Also, the articles illustrate the diversity of ethical dilemmas, which may evolve out of this sensitive part of medical practice.
A retrospective qualitative analysis of a series of cases was then carried out to identify the kinds of wishes of parents (to-be) or patients that the clinicians regarded as ethically problematic motivating them to request ethics consultation. We used existing EC records [18] complemented by a documentary form adjusted to evaluate ECs in neonatology [19, 20]. According to Mayrings approach for qualitative analysis we created categories that display the wishes of the patients/ parents (to-be) [21]. After this structuring process those categories were applied onto the documentary forms to identify those wishes.
The information acquisition is based on the “Embedded Researcher” approach, in which the ethics researcher is given full access to the hospital ward, the patients’ records as well as the treating physicians and the nursing team allowing him to familiarise himself with the context of each case. Data collection is carried out without disturbing or intervening into the on-going processes in the hospital. This procedure allows for a close look into the heart of the ethical dilemma in daily clinical practice [22]. The structured documentation includes a short summary of the underlying medical problem and a detailed analysis of the EC. The documentation achieves a high level of standardisation; moreover it makes the EC process transparent and comprehensible for any third party [18, 23, 24]. The adjusted form was tested with a selected case from each of the three investigated fields of specialisation to rule out any inadequacies.
Theoretically and methodologically, our EC approach is based on the four-principles approach of biomedical ethics (Beauchamp and Childress) [25] as well as a systematic change of perspectives. By actively acknowledging everyone’s interest we can “ensure fair consideration of the views of all the parties involved” [26]. The goal of this approach is to reduce any bias towards one side. Another central element of our EC approach is a comparison and evaluation of possible different diagnostic and therapeutic options in every case. All options are analysed under the ethical aspects of the four-principle approach [25,26,27]. The whole procedure allows to take a closer look at the most relevant needs, rights and obligations of all persons involved [28].
A total of 32 EC cases of the Women’s University Hospital of Basel (UFK) and the Children’s University Hospital of Basel (UKBB) were analysed, all of them were held during a period from 2002 until 2016: 8 in reproductive medicine, 15 in obstetrics, 7 in neonatology and 2 interdisciplinary cases. Included were only cases, in which the Department of Clinical Ethics was involved for an EC session and full documentation was available. Not involved, however, were informal discussions dealing with ethical aspects within the team or in educational meetings on ethical issues [28]. The author did not actively participate in the any of the EC sessions. All EC records used for this study were stored in an anonymised version.
ECs in our study are carried out “… on a professional basis in a ‘small team-approach’.” [18] Most ECs were requested by the treating physicians. They were chaired by an experienced clinical ethicist leading the discussion and to assure that the patients/parents’ views were represented explicitly. This aspect is of particular importance when the patients / parents are not directly participating in the discussion, as in most cases. Most meetings were inter-professional including physicians, nurses, midwives, psychologists, social workers together with the clinical ethicists’ staff. The patients / parents are most of the times involved indirectly through information by the physician in charge before the EC and its outcomes afterwards to guarantee shared decision making [18].