European Expert Opinion Statement on Paediatric Organ Donation Stresses Best Practice in Parent Communication

This paper provides a European expert opinion statement on paediatric organ donation, with a specific focus on best practice and communication with the parents of potential donors. Paediatric deceased organ donation is an incredibly altruistic gift that represents the best of humanity. Many children on transplant waiting lists cannot receive an organ from living or deceased adults, due to their need for small organs. For example, a child weighing 10 kg can only receive a heart from a deceased child. In Europe, it is usually the parents who decide to donate the organs of their dying or dead child. It is extremely rare for a child to have the capacity to do so before the withdrawal of life-sustaining therapy (WLST), in advance of circulatory determination of death. Given the mortality rates on paediatric waiting lists, parents should be supported to make positive decisions. This includes health professionals addressing issues that may inadvertently prevent or deter any decision to donate 1. In our opinion, European paediatric, emergency department and intensive care unit (ICU) teams should facilitate organ donation. It is vital that they collaborate with specialist organ donation teams throughout the admission of a potential child donor. This process should start with early notification during the initial care of a child with a severe brain injury, especially if death by neurological criteria is likely. Tackling these issues at an early stage allows those with parental responsibility to consider donation in an informed and timely fashion. It is crucial that this happens, because potential donors are lost at every step 2 and the uncomfortable truth is that this fails to prevent the deaths of others. We advocate for a European standard that provides a paediatric best-practice approach, guided by the leading relevant societies. We demonstrate this in this paper by progressively going through the family's experience of the organ donation process (Table 1). Recognition and screening in ICU Decision-making Support and key communication standards Three relevant organisations created this expert opinion statement. First, the European Academy of Paediatrics Ethics Special Interest Group. Second, the Paediatric Donation and Transplant section of the Ethical Legal and Psychosocial Aspects of Organ Transplantation/European Society for Organ Transplantation Section. Third, the European Society of Paediatric and Neonatal Intensive Care Ethics Section. We recommend objective trigger points to ensure consistent early referral to the organ donation team. These include fixed and dilated pupils at admission and presentation with a Glasgow Coma Score of less than four, which is not due to sedation. In countries that practise donation after circulatory death, another trigger is a plan to electively WLST, such as mechanical ventilation or extracorporeal membrane oxygenation. No conflict of interest arises if a clinician caring for a potential donor contacts the donation team, even if the child may survive. We do not think that there is any obligation to inform the parents that this has happened. Screening should then be performed by an organ donation team with access to information about potential recipients. They should not include those caring for the child and family, which avoids any perception that the ICU team has any conflict of interest. The screening process is important, because it ensures that parents can make timely, informed decisions about donation if their child does die. Screening also provides information about why children would not be suitable donors. This means clinicians can understand the child's potential to be a donor during end-of-life care discussions with families. If a child might fulfil national criteria, the diagnosis of death by neurological criteria should proceed. However, it is vital that the parents understand the tests and their implications. If the criteria are met in line with national guidelines and laws, then the child has died. Continuing to provide ICU care is no longer in the child's best interest and has resource implications. Parents and other appropriate family members should be offered the opportunity to observe at least one set of tests to help them understand the sad diagnosis. There is generally no need to secure formal consent for death by neurological criteria. However, clinicians must be familiar with national standards, and those performing the tests must be fully trained and competent in their use. Donation after circulatory death is practiced in some European countries, fundamentally based on the national norm about WLST. In our opinion, this form of donation should be uniformly offered throughout Europe. However, such a change would require significant amendments to end-of-life practices in several European countries. Isolated calls to introduce donation after circulatory determination of death are not sensible if WLST is not already practised. It could be argued that they constitute a risk to transplantation per se. Making decisions about WLST in children is one of the most challenging areas of modern medicine. It is crucial that such decisions are made in the child's best interests, with parents and consistent with national standards. One example is the UK Royal College of Paediatrics and Child Health framework on decisions to limit treatment in life-limiting and life-threatening conditions in children 3. We suggest WLST decisions must be made in advance of, and independent from, any considerations about organ donation. A holistic, compassionate approach to ICU end-of-life care is essential. Children and their families have individual needs and no one size fits all guidance would be adequate. The principle of family-centred care is crucial, and this paper highlights five key components. ICUs caring for children should have specialist family liaison nurses. In-house or external religious advisers should support families. Psychological support should be available for parents, extended families and staff. Social care teams are important, given the increasing social deprivation throughout Europe. Translation services are vital, given recent migratory changes. Donation does not interfere with memory-making processes, such as foot and handprints, collecting locks of the child's hair, family photographs or crucial religious observances. ICU and donation teams should train together and have shared support readily available, including team pre-briefs, debriefs and welfare sessions. These teams must work together to provide holistic, compassionate care for the child and their family throughout the donation process and after the child's death. Support after the child's death can include grief counselling and donor recognition, such as transplant-recipient information, thank you letters and specific donor recognition ceremonies. ICU and donation teams must approach parents sensitively in the ICU, in line with national end-of-life standards. Both teams should receive specific joint training on how to collaboratively discuss organ donation with bereaved parents. Organ donation is rare in any paediatric ICU, with few staff members regularly experiencing it due to the increasing size of medical and nursing teams. However, ICU teams are experts in caring for dying children in the presence of organ support technology and the compassionate, holistic care that bereaved parents and families need. They are not, however, experts in the approach to a potential donor, screening and matching organs or liaising with recipient teams. Donation teams manage all of these issues, but in turn are not experts in ICU. This is why collaboration provides the best service for children and their families. Traditional, paternalistic concerns about worrying grieving families by discussing organ donation are not supported by contemporary literature. Studies have suggested that parents feel they have the right to understand all the options available during their child's end-of-life care 4. The timing of the approach is particularly important 5. In our practise, a collaborative approach is made to parents after death by neurological criteria has been confirmed. This is because a number of important considerations can only be discussed once everyone accepts that the child has died. In particular, parents can decide how they feel about donating and understand the likely time interval before organ retrieval. Deceased donor management, which improves transplantation by optimising organ function, can start. The discussion must also include other end-of-life considerations, such as postmortem investigations and legal processes. With regard to donation after circulatory death, parents must understand the entire process before WLST. This includes the timing of the transfer from the ICU to the theatre and the practical withdrawal procedure. It also includes the stand-off time after cardiac arrest before death can be confirmed, and the organs can then be retrieved. This paper highlights five important fundamental principles about donation after circulatory death, which healthcare professionals must convey to parents, families and anyone else involved. The comfort of the dying child is paramount, and organ donation is a secondary issue. No action can be taken to speed up the dying process, but this paper does consider countries where medical assistance to die and euthanasia are lawful. Parents can stay with their child throughout the withdrawal process until death has been confirmed. They must understand that there is a limited time period for organ donation after WLST or warm ischaemic damage to the child's organs prevents a successful transplant. The parents can decide not to donate at any stage until the child's body is transferred to the operating theatre. Donor management care protocols should commence after death by neurological criteria to ensure that the organ function in the deceased donor is optimised to improve transplant outcomes. In particular, ICU treatments that target brain perfusion are no longer appropriate and should be changed to those that target long-term cardiovascular, respiratory, renal and abdominal organ function in potential recipients. The parents must be explicitly informed of the reasons for this change. There are different ethical considerations for children pronounced dead by neurological criteria and living children for whom WLST is planned. There are national variations in the acceptability of interventions to facilitate donations in the latter, which fall outside the remit of this paper 6. However, such interventions are not necessarily unethical, even though they do not focus on the child's survival. Parental consent is required because these interventions, which involve varying levels of invasiveness, fall outside the usual standard of ICU care. They are not, strictly speaking, in the dying child's specific medical best interests. Consent can range from verbal permission for X-rays or blood tests to more formal, signed consent for bronchoscopy or heparin. The treating clinicians must be mindful that their paramount duty remains to the child, who is probably dying. A nuanced consideration of potential harms arising from interventions in this situation is crucial and should be a key part of ongoing communication with the parents. It is also vital that teams have a clear understanding of national standards and laws. Table 2 highlights a number of crucial, avoidable issues that both ICU and donation teams should be aware of, based on the authors' shared experiences. These can cause unnecessary difficulties for parents during challenging periods and, sadly, lead to a loss of potential organ donations. It is not surprising that many involve communication 7. We also highlight some of the ethical norms. (1) ICU teams should not speculate with families about the timing of donation (2) Donation teams should not share potential recipient data with parents: The term ‘help others’ is preferable (Caveat: directed donation—reported in adults, not children in Europe) Further specific requests answered with this uncertainty and an offer to provide information about the transplant later if persistent, honour the request with the most accurate response possible. (3) Key DCD ethical statement (4) Invasive post-mortem interventions (PMI), for example normothermic regional perfusion (NRP) There is no moral reason why organ and tissue donations cannot be considered in countries that practise lawful paediatric euthanasia. However, exactly as with decisions about donation after circulatory determination of death following WLST, any desire to donate organs cannot determine whether euthanasia should occur. The medical teams, and those with lawful decision-making capacity, must have already decided that euthanasia is in the child's best interests before any treatment is withdrawn. National safeguards must also be respected 8. Research on donated organs may be possible if organs cannot be transplanted due to their condition or there is a lack of suitable recipients. It is vital to improve paediatric transplant science, and bereaved parents should be asked to consent to any suitable research. Organ donation for research can accompany the donation of other organs for transplant or occur in isolation. Tissue, such as heart valves, can be donated if organ donation is not possible or can accompany the donation of other organs. Routine end-of-life processes that provide comfort should be offered to all families who agree to donate their child's organs. The child's body can return to the ICU after donation for any important rituals and collecting memories, such as foot and handprints. This expert opinion statement suggests that European ICU teams caring for critically ill children must recognise potential organ donors in their care. They should use objective trigger points to refer cases to donation teams, which helps avoid any perceived conflict of interest. Doing this enables trained professionals to carry out timely donation screening. Optimising potential organ donation from suitable children is a moral duty, which does not compromise the primary duty of care to the child and their parents. National end-of-life care standards must always be followed. This should be the case whether donation follows death by neurological criteria or donation after circulatory determination of death in appropriate countries. ICU and donation teams should undergo routine collaborative training. Both must ensure excellent communication throughout the donation process between professionals, and crucially with the parents of potential child donors. The societies that were involved in developing this statement recognise that the death of a child is a tragedy. However, it can be compounded further by the death of other children if optimal paediatric organ donation processes are not followed. Joe Brierley: conceptualization, methodology, validation, project administration, writing – review and editing, writing – original draft. All other authors contributed to the initial concept and reviewed and edited the manuscript following its initial draft, to the final submitted manuscript. The authors have nothing to report. The authors declare no conflicts of interest. Data sharing not applicable to this article as no datasets were generated or analysed during the current study.