Sharing the burden of deciding near the end of a child’s life

Categories: Research.

According to a study done by Mirjam de Vos: Sharing the burden of deciding-How physicians and parents make end-of-life decisions, the process of forgoing curative treatment for children is being done differently within the eight university hospitals in the Netherlands. 

Even in cases of adult medicine the decision to forgo further treatment requires a radical process beforehand. Nevertheless, there are major differences. Adults, unlike children, can look back on a rich and full life which helps to foster feelings of resignation and acceptance. In the case of children there are predominately feelings of injustice, frustration and deep sadness. The adult patient will often make their own decision, in close consultation with the doctor. With children, doctors often make decisions in close consultation with parents about the life and death of a child, in cases where the child is not able to. 

According to de Vos, the responsibility of making this decision is a heavy burden as in many cases questions remain about whether the correct decision was made at the appropriate time.

de Vos encounters numerous gaps in the transfer of information and in communication. Misunderstandings and differences in the interpretation occur when terms such as ‘medically futile act’ and ‘unbearable and hopeless suffering’ are used. The research also revealed that parents don’t feel as if they have an equal say in the decision making process. In 20% of cases the medical and ethical dilemmas surrounding the abandonment of further medical treatment policy lead to a conflict between parents and doctors. 

In most cases, parents wanted treatment to continue as they still had hope that their child could survive and be happy. A quarter of the doctors made decisions without consultation with parents and in more than a quarter of all cases, parents had the decisive vote. More than half of the surveyed physicians would like to see the development of a national guideline for end-of-life decisions.

Three parts to the thesis
The thesis consists of three parts. The first focuses on the doctors’ perspective and investigates how paediatric specialists make end of-life decisions, how they involve the child and his or her parents in the decision-making process, and how they cope with conflicts. In the second part, the main focus is on the parents. The research explores how parents from different countries experience their involvement in end-of-life decisions for their children and which factors they consider to be important in making these decisions. In the third, entitled ‘The shared perspective’, the research focuses on both the perspective of the doctors and of the parents. It investigates how physicians and parents communicate about end-of-life decisions in clinical practice and to what extent parents participate in making these decisions.

This important research explores the pros and cons of making decisions together with parents and, based on this analysis, formulates recommendations on how to better involve and support parents throughout the complex process of end-of-life decision-making. It is one of the few studies to have been undertaken in this area in The Netherlands and provides important insights, guidelines and advice for parents, doctors and health care providers as well as hospital boards. It should be mandatory reading for all professionals providing children’s palliative care.

The research is written up in English and can be downloaded from: