Lack of knowledge and experience highlights the need for a clear paediatric organ and tissue donation protocol in the Netherlands

Aim This study explored the attitudes of medical professionals to organ and tissue donation in paediatric intensive care units (PICUs) and neonatal intensive care units (NICUs) in the Netherlands. It also examined their compliance with the existing Dutch donation protocol and assessed whether a paediatric donation protocol was needed. Methods We invited 966 professionals working in all eight PICUs and the two largest NICUs to complete an online survey from December 2016 until April 2017. Results A quarter (25%) took part and they included PICU intensivists, neonatologists, nurses and other health and allied professionals. Most were female and nurses. More than half (54%) of the PICU respondents considered paediatric organ donation to be very important and 53% supported tissue donation. In contrast, only 22% of the NICU respondents believed that both neonatal organ and tissue donation were very important. Familiarity and compliance with the existing national donation protocol were low. PICU nurses had significantly less experience than PICU intensivists and felt less comfortable with the donation process. None of the NICU respondents had prior donation experience. Conclusion Paediatric intensive care units and NICU professionals lack specialised knowledge and experience on organ and tissue donation. A comprehensive and clear paediatric donation protocol is clearly needed

Deliberate termination of life of newborns with spina bifida, a critical reappraisal

Objects: Deliberate termination of life of newborns (involuntary euthanasia) with meningomyelocele (MMC) is practiced openly only in the Netherlands. 'Unbearable and hopeless suffering' is the single most cited criterion for this termination, together with the notion that 'there are no other proper medical means to alleviate this suffering'. In this paper, both (and other) statements are questioned, also by putting them in a broader perspective. Methods: First, a historical overview of the treatment of newborns with MMC is presented, concentrating on the question of selection for treatment. Second, a thorough analysis is made of the criteria used for life termination. Third, a case of a newborn with a very severe MMC is presented as a 'reference case'. Conclusion: 'Unbearable and hopeless suffering' cannot be applied to newborns with MMC. They are not 'terminally ill' and do have 'prospects of a future'. In these end-of-life decisions, 'quality of life judgments' should not be applied. When such a newborn is not treated, modern palliative care always will suffice in eliminating possible discomfort. There is no reason whatsoever for active life-termination of these newborns

End-of-life decisions in newborns:An approach from the Netherlands

End-of-life decisions in newborns with incurable conditions are especially difficult for pediatricians if they regard the group of stable infants with a hopeless prognosis, not dependent on technology. If a life full of severe and sustained suffering that cannot be relieved by any other means is expected, deliberate ending of life can be an acceptable choice in the Netherlands under very strict conditions. To increase the quality of the decision-making process and facilitate the mandatory reporting of life-ending procedures, a set of medical and legal guidelines ( the Groningen protocol) was made in our institution in collaboration with the district attorney. This protocol serves as a tool to bring newborn euthanasia under a regime of effective control. This article describes the present approach to life-ending measures in newborns in the Netherlands and gives an overview of the protocol

Shared decision-making in pediatric palliative care in the Netherlands

Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals of care and preferences for future care and treatment. Elucidation of these values and preferences is preferably done early in the disease trajectory via so-called Advance Care Planning (ACP) conversations. In the Netherlands, ACP and SDM are being adopted by most health care professionals. This has happened only recently. Ten years ago, ACP and SDM were unknown concepts for the vast majority of Dutch HCPs. Today, interest in these conversational approaches is booming in both daily practice and in research. This rise has been reinforced by two recent major advancements in Dutch pediatric palliative care: the Individual Care Plan (ICP) and the Dutch Evidence-Based Guideline on Pediatric Palliative Care (DGPPC). Despite this positive evolution, a lot of work is still ahead. ACP and SDM demand a change in mindset from the traditional paternalistic approach by which the HCP ‘knows what is best for this child’ to a more humble and open approach in which (non-medical) factors that are important to the child and family and may influence the final treatment decision. Such changes in mindset don't happen overnight. In this article we describe the situation of pediatric palliative care in the Netherlands, with focus on the recent evolution of ACP and SDM.</p

Shared decision-making in pediatric palliative care in the Netherlands

Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals of care and preferences for future care and treatment. Elucidation of these values and preferences is preferably done early in the disease trajectory via so-called Advance Care Planning (ACP) conversations. In the Netherlands, ACP and SDM are being adopted by most health care professionals. This has happened only recently. Ten years ago, ACP and SDM were unknown concepts for the vast majority of Dutch HCPs. Today, interest in these conversational approaches is booming in both daily practice and in research. This rise has been reinforced by two recent major advancements in Dutch pediatric palliative care: the Individual Care Plan (ICP) and the Dutch Evidence-Based Guideline on Pediatric Palliative Care (DGPPC). Despite this positive evolution, a lot of work is still ahead. ACP and SDM demand a change in mindset from the traditional paternalistic approach by which the HCP ‘knows what is best for this child’ to a more humble and open approach in which (non-medical) factors that are important to the child and family and may influence the final treatment decision. Such changes in mindset don't happen overnight. In this article we describe the situation of pediatric palliative care in the Netherlands, with focus on the recent evolution of ACP and SDM