Advanced medical treatment of children and adolescents entails challenging ethical dilemmas, including issues relating to the best interests of the child, the wishes and hopes of the child/their parents, and the healthcare personnel's opinions on what constitutes professionally sound and compassionate treatment. Setting limits for treatment is a challenge, and the growing emphasis on patient autonomy has not made it easier. Garnering the views of parties who are not directly involved with the treatment, such as a clinical ethics committee, is sometimes considered useful.
In the study period, 60 % of the cases affected children and adolescents, the same as in a previous ten-year period at one of the two merged hospitals (8). Only one in every four beds at the hospital are allocated to children and adolescents. These cases are therefore overrepresented in the committee. Findings in other studies vary; while some find high numbers of paediatric and adolescent cases in clinical ethics committees (8), others find the opposite (9, 10).
There is evidence to suggest that medical personnel who face ethical dilemmas view newborn babies differently to how they view older children and adults (11). This seems to be the case regardless of culture, politics or religion (11). One explanation for only three infants below the age of three months being discussed by the committee may be that fewer conflicts arose in relation to these patients because practitioners take more notice of parents' views on the treatment of young babies. Local factors, such as the clinical ethics competence of staff, may contribute to the varying levels of paediatric cases dealt with by the committees and also to differences in the age distribution of cases (12).
The boys were in the majority in the cases discussed (62 %). This cannot be attributed to culture or ethnicity since the gender balance was the same for children and adolescents of foreign-born parents as for those with parents born in Norway. In other studies of gender in paediatric cases in committees, three out of four found an overrepresentation of boys, but this was not as pronounced as in our findings (13, 10).
Our committee has more experience than most with involving patients and/or their families directly in meetings (5). Everyone who is invited to such meetings receives written information in advance. The parents' presence in the discussions adds an important dimension to the committee's understanding and gives patients' families a direct insight into the ethical arguments. Medical facts often come to the fore that may not have been understood by the families, or sometimes not even conveyed to them (14). In an interview survey of ten parents who attended such meetings, all parents agreed that it had been important for them to be present, and no one felt that participation had been too much of a burden (14).
There seems to be a lack of literature on patient/families' participation in committee meetings, and indeed the practice is sometimes considered controversial (10, 15, 16). In some cases, the primary need is to clarify the basis for disagreement among the staff, as in six of our cases. It may therefore be appropriate to deal with this first, before considering involving the parents. However, if a committee discussion plays a role in changing the treatment goal, we believe that participation gives parents better insight and understanding, while transparency enhances mutual trust (14). In general, our experience over the years is that having the parents present in the discussions gives the committee members a better opportunity to get to know the child as an individual and to learn about the situation from the family's perspective (5).
There are advantages and disadvantages attached to families bringing someone for support to a meeting. Those who feel insecure can find strength in the presence of someone they trust. Sometimes the person supporting the family is there to champion a particular solution, which can be even more apparent when the family brings a lawyer. This can prevent them from viewing the case from more than one perspective – a basic essential for ethical discussion – thereby escalating the conflict.
In an earlier review by the same committee, approximately one-third of the cases were retrospective (8), whereas only two of 37 cases were retrospective in the latest study. This may indicate that the committees are increasingly being perceived as an aid in ongoing cases, and that the content of the discussions can be used in the decision-making process. The majority of the discussions concerned restricting life-prolonging treatment, in line with findings in several other studies (9, 10, 17, 18). 'Giving up' seems to be increasingly unacceptable, not only for the patients and their families, but sometimes also for healthcare personnel. Restricting treatment may seem particularly difficult to accept in Norway, where resources are sometimes regarded as unlimited. It is therefore not surprising that disagreements arose between parents and practitioners in almost half of the paediatric and adolescent cases concerning restriction of treatment. Disagreement is a common reason for consulting the committees (2, 13, 15, 16, 19)(19–21). Although most disagreements concerned parents arguing to continue active treatment, there were also cases where the parents rejected treatment, with potentially serious consequences for the children. Such cases are particularly challenging for healthcare personnel. In some cases, there was no real disagreement, but a large degree of uncertainty among practitioners and parents alike about what was the best solution from an ethical perspective. In such cases, the committee was able to contribute to a structured discussion on values and ethics without necessarily giving clear advice.
There may be different views on whether a committee discussion should aim for a consensus (10, 16, 22). We argue that agreement is primarily of value if it is the result of an open exchange of views where divergent opinions are welcome. Ethical dilemmas can and should always be considered from more than one perspective. It is then the committee's task to throw light on these views and explain the ethical (and moral) values they represent. Choosing between these values is not something that the committee does in isolation, it also involves a respectful dialogue between the patient and/or their representative together with the doctor responsible for the patient's care and other healthcare personnel.
Our study has strengths and weaknesses. Both authors have been members of this committee throughout the period under review and thus had a good insight into all of the cases. This may also have limited the possibilities for considering new perspectives. However, carrying out two separate reviews of the data six months apart ought to have provided an opportunity for more perspectives to emerge. The patients are not representative of a general Norwegian hospital population due to the special role that the hospital in the study plays in the Norwegian public health service. Nevertheless, there is reason to believe that the issues raised are also relevant at other hospitals.