ESPNIC Standards for End of Life Care

European Society for Paediatric & Neonatal Intensive Care Society Standards for End of Life Care including Organ/Tissue Donation

ESPNIC considers the following statements to represent best practice:

1) Every Intensive Care unit caring for children should have both medical and nursing staff with responsibility to ensure excellent end-of-life care is provided for dying children.

2)    Expert palliative care provision should be available for children in ICU thought likely to die either during admission or in the foreseeable future.

3)    Organ and tissue donation is a routine part of childhood end-of-life care for children.

4)    Pastoral (e.g. chaplaincy) and psychological support should be provided for the parents, siblings and other family of dying children.

5)    ICU teams should:

  • Establish local paediatric, & where appropriate neonatal, policies and practice based on national guidelines for end-of-life care including palliative care, post mortem & coronial referral and donation.
  • Facilitate education and training on this to all relevant staff.
  • Ensure organ donation is offered via expert teams in all appropriate situations. (5-8 below)

6)    Every child that may be potentially ‘brain-dead’ should be referred to organ donation services to enable parents to consider donation, and undergo appropriate brainstem death (BSD) testing, in accordance with national guidelines.

7)    In countries where donation after circulatory death (DCD) is permitted there should be a discussion with specialist organ donation teams in any case in which there is the intention to withdraw life-sustaining therapy and where death is likely to occur in an appropriate time for DCD, as determined by national guidelines

8)    Discussion about organ donation with parents/relatives should occur with experts in donation. Collaborative discussion with the family by both ICU team and organ donation team together is preferred, though the organ donation team alone can approach if the ICU team supports this. As a minimum there should be an agreed plan between organ donation and ICU teams regarding any approach.

9)    Organ donation & successful transplantation can be improved by active management of the brain-dead donor and this should be undertaken in accordance with national or local guidelines. Organ donation teams and/or other donor physiology teams can guide management.

10)   In the absence of national guidelines, ICU teams should lead the development of appropriate resources. Support for this can be accessed via ESPNIC EC or European Society for Organs Transplants (ESOT – esot.org) or relevant palliative care organisations.