Dossier / bijgewerkt: 26 juli 2023
This page is a translation of the KNMG dossier 'Levenseindebeslissingen bij kinderen'.
For children who are seriously ill, physicians may be faced with complex and profound choices, including end of life decisions. Physicians looking for support or advice with this complex decision-making regarding the end of life for children can call the End of Life Children's Physician Support Centre [Artsensteunpunt Levenseinde Kinderen]. The position paper titled Medical decisions regarding end of life of newborn babies with extremely serious defects gives physicians indications of what to do if further treatment of a baby is medically pointless.
Since 1 October 2018, physicians looking for support or advice with this complex decision-making regarding the end of life for children can call the End of Life Children's Physician Support Centre [Artsensteunpunt Levenseinde Kinderen].
The Support Centre advises and makes suggestions about issues concerning, for example, the decision-making process during treatment, treatment limitations or end of life decisions. A physician can also call on the Support Centre after the death of a child for a supportive talk with a fellow physician about the course of care offered. This could address procedural, substantive or emotional aspects. The Physician Support Centre thus facilitates peer consultation and makes suggestions about medical-ethical dilemmas. The Support Centre is not meant for acute care questions or to be a ‘second opinion’ group.
The End of Life Children's Physician Support Centre consists of a core group of paediatricians and specialists for people with mental disabilities. They form pairs that offer advice and support by telephone. Whenever a physician uses the telephone number to call on the Physician Support Centre, a pair (a specialist for people with mental disabilities and a paediatrician) provide a rapid first contact and response to the question. In the background there is a multidisciplinary team of experts available, including a KNMG ethicist and KNMG legal expert, for further discussion of complex ethical/legal dilemmas.
The End of Life Children's Physician Support Centre was established by the Dutch Centre of Expertise in Children's Palliative Care in close collaboration with representatives of the KNMG, NVK and NVAVG. Physicians can access the End of Life Children's Physician Support Centre by telephone on Mondays to Fridays from 08.00 to 17.00. Telephone number: +31(0)6 - 256 50 848. Please send any questions about the Support Centre to artsensteunpunt@kinderpalliatief.nl.
The birth of a baby with extremely serious defects often leads to profound dilemmas for parents and the involved medical team concerning continuing or stopping treatment. In the position paper titled Clear criteria for medical end of life decisions for newborn infants with very serious birth defects (2013), the KNMG gives physicians indications of what to do if further treatment of a baby is medically pointless.
If after consulting the parents a physician decides to terminate the treatment of a newborn baby (less than 1 year old) to prevent unnecessary prolongation of suffering and dying, he must report the termination of life to a committee. This is legally stipulated in the Scheme for Late Termination of Pregnancy and Termination of Life for Newborns (LZALP Scheme) of 1 February 2016. More information about the Scheme and procedure can be found on the website of the Committee.
The Medical decisions involving the end of life of newborn babies file was transferred on 1 January 2018 to the Netherlands Association for Paediatrics (NVK) and the Netherlands Association for Obstetrics and Gynaecology (NVOG). For more information on this topic, you can approach these associations. The role of the KNMG regarding this topic is restricted to advising the NVK and NVOG about medical-legal or medical-ethical questions.