Given the lack of knowledge about safety and efficacy of many treatments for children, pediatric clinical trials are important, but recruitment for pediatric research is difficult. Little is known about children's perspective on participating in trials. The purpose of this study was to understand the experiences and motivations of young people who took part in clinical trials. This is a qualitative interview study of 25 young people aged 10–23 who were invited to take part in clinical trials. Interviews were audio (...) or video recorded and analyzed using framework analysis. Young peoples' motivations were both personal benefit and helping others. Both incentives appeared to be more complex than expected. We introduce the terms “network of exchange” and “intergenerational solidarity” to describe these motivations. To improve recruitment, professionals should be more open about research opportunities, provide better information, and give young people feedback after the trial has ended. (shrink)

In The Netherlands, neonatal euthanasia has become a legal option and the Groningen Protocol contains an approach to identify situations in which neonatal euthanasia might be appropriate. In the 5 years following the publication of the protocol, neither the prediction that this would be the first step on a slippery slope, nor the prediction of complete transparency and legal control became true. Instead, we experienced a transformation of the healthcare system after antenatal screening policy became a part of antenatal care. (...) This resulted in increased terminations of pregnancy and less euthanasia. (shrink)

BackgroundThe Dutch Euthanasia Act applies to patients 12 years and older, which makes euthanasia for minors younger than 12 legally impossible. The issue under discussion specifically regards the capacity of minors to request euthanasia.ObjectiveGain insight in paediatric experts’ views about which criteria are important to assess capacity, from what age minors can meet those criteria, what an assessment procedure should look like and what role parents should have.MethodsA Delphi study with 16 experts (paediatricians, paediatric nurses and paediatric psychologists) who work (...) in Children Comfort Teams in Dutch academic hospitals. The questionnaire contained statements concerning criteria for capacity and procedural criteria. Consensus was defined as ≥80% agreement.ResultsThe experts agreed that five criteria for capacity, found in a previous literature study, are all important. They agreed that some children between ages 9 and 11 could meet all the criteria. Consensus was reached for the statements that the entire medical team should be involved in the decision making and that a second independent expert must assess the case. Experts agreed that the parents’ opinion is relevant and should always be taken into account, but it need not be decisive.ConclusionThis study shows that the age limit of 12 years in the Dutch Euthanasia Act is too strong according to paediatric experts. Letting go of the age limit or lowering the age limit combined with adequate capacity assessment for minors younger than 12 are options that should be discussed further. (shrink)

In 2015, the ATS/AACN/ACCP/ESICM/SCCM published an official policy statement about responding to requests for potentially inappropriate treatments in intensive care units. The Multiorganization Statement aims to provide guidance for clinicians to prevent and manage disputes about patients with advanced critical illness. Recommendations 2 and 3 focus on terminology and suggest an alternative set of words to define and to help manage medical futility. Recommendations 1 and 4 focus on conflict resolution strategies and the development of new policies or legislation about (...) when life-prolonging technologies should not be used. Schneiderman and colleagues have written an... (shrink)