End september the Dutch government publishes a report about the way physicians and parents deal with the end of life of minors. The report can be read here, only in Dutch.
In this study, an answer was sought to five questions about the practice of “medical decisions about the end of life in children 1-12 years”. The answers are based on results of the national death investigation 2015, in-depth interviews with 66 parents of 44 patients (61% died) and 34 doctors involved and a survey of 38 doctors who had experience with end-of-life care for children aged 1-12.
Research questions
The following 5 research questions were central to the study:
1. What are the characteristics of children who die between the ages of 1 and 12?
2. Which decisions about the end of life are made in practice for the seriously ill children aged 1-12 years and what is the frequency of the different decisions?
3. How and when do such decisions come about (division of roles, timing, considerations, judgment on competence, relationship with guideline for palliative care children, conception of suffering)?
4. How are such decisions actually implemented, and how is their interpretation interpreted the involved?
5. What are the bottlenecks in such decisions for doctors and / or parents?
Conclusions
By answering these research questions, the following conclusions were made:
– There are no indications that active termination of life and euthanasia in children (1-12) currently occurs.
– Doctors describe a gray area between palliative sedation and active life termination in which the boundaries between both practices are unclear.
– There are cases of unbearable and hopeless suffering among children and doctors are not always able to take away this suffering.
– There is a clear need among a limited number of parents and doctors for widening the possibility of active termination of life for children.
Recommendations
Familiarity with and support for the recently established doctors’ support center of the national child palliative care knowledge center should be increased, which can be used to meet, among other things, the need for doctors to use palliative expertise before taking a medical decision.
Basic knowledge of pediatricians about palliative care can be increased by giving more attention to it in training.
The distinction between palliative sedation and active termination of life is sometimes unclear for pediatricians and should be clarified, for example in the revised NVK Palliative Care for Children guideline. This guideline can also elaborate more explicitly what the role of parents should and can be in end-of-life decision-making and how the physician can give substance to this in a good way.
Existing regulations with regard to active termination of life at children must be clarified and it must also be checked whether further regulation is appropriate.