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Paediatric organ donation in the UK
  1. Joe Brierley
  1. Correspondence to Dr Joe Brierley, Paediatric and Neonatal Intensive Care Unit, Great Ormond Street Hospital for Children, London WC1N 3JH, UK; brierj{at}gosh.nhs.uk

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The recent task force document regarding organ donation in the UK may raise concerns among paediatricians. While the document should act as a clarion call to the National Health Service (NHS) to facilitate the provision of organs from dead donors and either save or improve the quality of the lives of those in irreversible organ failure, there is no mention in the document of donation in the child population. Unfortunately, this is not because the impasse in adult donation is unknown in paediatrics, but perhaps hints at the even greater efforts that significant changes in paediatric organ donor rates will require. Can we, however, seize the opportunity afforded by the focus on donation that the task force will generate to improve the situation as regards children? This review cannot address all aspects of donation but will highlight areas in which there may be opportunities to optimise provision of organs to severely ill and dying children.

Background

In the UK children die and suffer ill health in situations where organ transplantation offers a realistic treatment option. As in adult medicine, the number of children who would benefit from organ transplantation far exceeds the number of donors.1 2 While seat belts, cycle helmets and improvements in paediatric intensive care have led to a decrease in the number of children dying from severe traumatic brain injury,3 there can be little doubt that opportunities for donation are missed.

Although the UK population is supportive of organ donation,4,,6 donation rates remain among the lowest in Europe.7 Recognition of this led to the Depar t ment of Healt h ( DH ) Organ Donor Task Force (ODTF)8 which suggested a 50% increase over 5 years in adult donation was realistic. While the potential donor pool is very different, adaptations of various ODTF recommendations can be used to optimise donation within paediatric practice (table 1).

Table 1

Modified Organ Donor Task Force (ODTF) recommendations

At present paediatric donation can only occur after certification of death, as live donation is not permitted under the age of 18,9 although increasingly children do benefit from live-related donation of kidneys, liver and lungs. Of the “dead donors”10 the majority are certified as dead using brainstem criteria, that is, they donate after brain-stem death (BSD), or make a heart-beating donation (HBD). However, increasing numbers are donating organs following certification using cardiorespiratory criteria, or make a non-heart beating donation (NHBD).11 This most frequently occurs af ter elective withdrawal in the paediatric intensive care unit (PICU), covered by category III of the Maastricht criteria (table 212 13).

Table 2

Modified Maastricht criteria for nonheartbeating donation (NHBD)8 9

No UK legal definition of death exists and any difficulty in establishing when death has occurred for the purposes of organ donation reflects difficulties in defining death per se. Indeed, the differentiation of living human beings, entitled to human rights and status, from those who have died is a vital socio-legal, as well as medical, process.

UK Transplant, part of NHS Blood and Transplant (NHSBT), is the organisation tasked with overseeing organ donation and employs the team of donor transplant co-ordinators (DTCs) who are so crucial to the entire process. DTCs are involved with donation requesting, support of donor families and on-going donor management, and facilitate organ retrieval and allocation. They provide follow-up information and support for relatives and staff. Other responsibilities include public and healthcare professional education and training in organ donation and transplantation. Many hospitals have embedded DTCs and paediatric teams should keep in regular contact and use DTCs not just during donation but also for regular training. Whether the optimal approach to a family is from clinicians the family already know, a DTC or a more collaborative request remains uncertain,14 15 although the ongoing UK Appropriateness of Coronary Revascularisation (ACRE) study, discussed by Simpkin et al,15 should clarify this. For most paediatricians, even those on a neurosurgical PICU, organ and tissue donation is currently infrequent and so regular contact with the DTC is important in ensuring optimal practice.

Each hospital now has a “clinical lead” in organ donation, generally an adult intensivist often with limited paediatric knowledge. It would be appropriate for each paediatric department and mandatory for those with a PICU, to designate a consultant to liase regularly with the clinical lead. Trusts also have an organ donation committee with donation rates part of mandatory reporting and set to become a key trust performance indicator.

NHSBT’s potential donor audit (PDA16) attempts to calculate the numbers of patients that might potentially have become organ donors. Data on every child death within PICU is entered and validated centrally. While the process is not child specific, it does provide the best estimate of organ procurement rates. Analysis of why potential donors did not ultimately donate is undertaken, reported to NHSBT’s Donation Advisory Group and displayed on their website.

Current organ donor rates in uk picus

Tables 3 and 4 show anonymous PDA audit data for individual UK PICUs, for BSD and NHBD, respectively. Clearly there is a wide discrepancy between the rates of potential donors who become actual donors between different units for both donation modes. While some variation will always occur, these data suggest significant inconsistencies in clinical practice that may represent a route to increase paediatric organ donation. Such a disparity between different PICUs is a poor reflection of a generally high standard specialty and must be urgently addressed by all within it. The Paediatric Intensive Care Society has now set up an interest group that has commenced education programmes and which will aim to set nationally agreed standards and guidelines.

Table 3

Paediatric heart-beating potential donor audit (PDA) (Janaury 2006–December 2007)16

Table 4

Paediatric non-heart beating potential donor audit (PDA) (January 2006–December 2007)16

Heart-beating organ donation

Most organ donation from children occurs after neurological death has been certified using brainstem criteria, a widely accepted ethical and legal concept.17 While the origins of BSD were clearly remote from concepts of organ donation,18 certainly the most viable organs for transplant are harvested in this way due to persistence of endogenous circulation.

The current guidelines on certifying brain death, recently published by the Academy of Medical Royal Colleges,19 largely retained the 1991 British Paediatric Association (BPA) guidelines,20 despite the intervening transformation in medical practice. This document leaves the UK at variance with similar healthcare economies in rejecting the concept of neurological death in those under 2 months of age. While any definition of death must remain explicitly separate from the practice of organ donation, one consequence of the UK position is that infants dying in Europe provide cardiac transplants for the UK, whereas infants dying here cannot. In an era of increasing European integration such an anomaly seems bizarre.

Anencephalic donation

Anencephalic donation is not practiced in the UK and whether such donation should be offered to women continuing an anencephalic pregnancy is one task for the ODTF recommended ethics committee.

The 1988 report from the Working Party on Organ Transplantation in Neonates21 suggested that anencephalic infants could be declared dead at cessation of respiration without the need for asystole. Mechanical ventilation could then occur for cardiac harvest. In the future such donation also offers the possibility of hepatocyte transplantation for infants currently dying of liver diseases.

Non-heart beating donation

NHBD occurs after certification of death using cardiorespiratory criteria, most frequently after traumatic or hypoxic brain injury.22 Due to confounding factors such as antecedent ischaemia/organ dysfunction, relatively little data exist on acceptable warm-ischaemic times for transplant. At the onset of widespread organ transplantation in the 1950s, all kidneys were NHBD or live-related.

In children, NHBD most frequently occurs after PICU withdrawal in the best interests of the child, without consideration of organ donation. Parents are made aware donation may not be possible, especially if a prolonged interval occurs between withdrawal and asystole. It is made explicit that the time they can spend with their child immediately after death is short and that they can decline at anytime.

NHBD yields fewer organs than HBD, as cardiac harvest is not currently undertaken due to concerns regarding warmischaemic times, although recent US experience of this will be discussed later. Furthermore, certifying death based on irreversible cessation of cardiac function suggests any restoration of heart function, even in another body, means the criteria for death were not truly met.23

As in the adult model,24 withdrawal can occur on PICU and, with prior agreement, if asystole happens within a reasonable period, then after 5 continuous minutes of asystole death is certified and the body moved to theatre for harvest. Moving a dead child from PICU to theatre through functioning hospital corridors can be challenging and an alternative, not recommended in adult guidelines, is to transfer to theatre for withdrawal. With severe brain injury it can usually be anticipated whether the child will be apnoeic on discontinuation of ventilation, which is the key to deciding the location for NHBD withdrawal. While it is ethically acceptable for medications such as sedation and muscle relaxants to continue during withdrawal,25 no medications can be commenced other than to relieve discomfort in the dying child. Interventions such as cooling and anticoagulation are generally unacceptable, as they cannot benefit the dying child and some might argue transfer to theatre is similarly non-beneficial. Others consider this appropriate, insofar as the child’s best interests are represented by their family’s wish to donate and any possibility of “harm” during movement is negligible. Once retrieval has occurred the body can be returned to the PICU for further bereavement care.

The key element in NHBD is the time between withdrawal of life support and asystole, which the DTC communicates to the transplant team from PICU and is generally a few hours at most for successful NHBD, although if longer of course tissue can still be harvested.

Tissues

In children this is limited to heart valve and corneal donation and similar screening for infective and oncological diagnosis is necessary; hence, referral to DTC is mandatory.

Heart valve donation requires cardiac explantation usually within 24 h of death. All UK tissue banks accept valves from infants dying aged over 6 months and one from neonates above term.

Increasing corneal donation from children would facilitate the availability of under 21-year-old corneas, which are crucial for paediatric corneal transplantation.

What can be done?

Maximisation

Given surveys persistently suggesting the public are in favour of organ donation,4,,6 and successful programmes in similar countries, it seems there is a reasonable mandate to optimise organ donation from children dying in the UK. Several key areas should be addressed to realise this.

Encouraging discussions within families by providing information in schools, as has occurred in Scotland,26 and clear information on registration and organ donor cards would increase the likelihood of families being able to express the wishes and best interests of their dying child.

Within paediatrics three methods of increasing organ and tissue donation seem logical. First, donation must be optimised from children dying who should be considered for donation concurrently. As most die within PICU this requires improved organisation and utilisation of current systems and processes within that specialty. Second, donation from children who die in places where the process is currently unusual, such as the emergency department and neonatal unit (NICU), should be considered. This will require more deep-rooted changes in current practice, although no formal changes in legislation or re-consideration of ethical norms is necessary. The third approach is to consider fundamental changes in ethico-legal standards, which although challenging may prove feasible.

Optimisation of the current potential pool

The PDA suggests significant numbers of children die within PICU without organ donation being considered. Although some reasons for non-donation may not be recorded and while there are different reasons and degrees of attrition at each stage of the process, it is not unreasonable to conclude that there are occasions when parents are not offered the opportunity to donate, despite clear evidence of better long-term outcome for the family.27

The extent and variation of this problem (tables 3 and 4) is compounded by the fact that although the number of children donating organs after cardiorespiratory certification is increasing, the number of HBD, currently the only method of providing hearts for transplantation, is decreasing.

Any child who might fulfil brainstem criteria should undergo formal brainstem tests as there is no purpose in ventilating a brain-dead child other than organ donation, to do so being a breech of coronial regulations. Failing to provide the parents of a brain-dead child with accurate information or the opportunity to donate their child’s organs, especially if the child has previously requested this, is unfair.

Some evidence suggests steps can be taken to optimise organ provision once a decision to donate is made. While these are outside the scope of this paper, it is worth mentioning that optimal care of the brain-dead child28 and acceptance by transplant teams of organs considered suboptimal29 both increase the number of organs successfully transplanted. Furthermore, the provision under ODTF recommendation 10 of dedicated retrieval teams should decrease the time spent awaiting such teams on PICU.

Box 1 Absolute and relative contraindications to solid organ donation

Absolute contraindications

  • HIV or CJD infection

  • Metastatic or non-curable malignant disease or a history of malignancy other than certain isolated brain tumours

Relative contraindications (discuss with DTC)

  • Children with partially treated bacterial infections (including meningococcal disease), hepatitis B or C virus, or risk factors for viral hepatitis might be suitable donors

  • Children with treated infection can donate (including influenza – discuss with DTC)

Increasingly, deaths on PICU occur after withdrawal rather than unsuccessful resuscitation.30 In the absence of absolute contraindications (box 1), it is surely reasonable to enquire as to any parent’s wishes regarding donation and of course the previously expressed views of the child. All PICUs should have policies in place regarding NHBD and provision for parents to be given information prior to their child’s death if NHBD is feasible.

Increasing the pool of donors

Of the areas outside PICU where children die, NICU and the emergency department are most experienced. Although many emergency departments now have adult NHBD protocols and coroners are increasingly familiar with NHBD processes, many paediatric deaths fall under coronial jurisdiction because no readily certifiable cause of death is obvious, as in sudden infant death syndrome. No donation conventionally occurs as formal coronial autopsy is mandatory and furthermore there may be unknown diagnoses that preclude donation. However, some children die shortly after presentation to emergency department with sudden catastrophic cerebral haemorrhage, strangulation or severe traumatic brain injury and donation may be possible with coronial permission. NHBD can occur either after certification with coronial permission, or with retrieval forming part of a rapid coronial post-mortem. Of course this requires considerable goodwill and prior agreement from local coroners and is one area to be addressed with ODTF recommendation 14.

Paediatricians should also consider tissue donation from children dying in emergency department, wards or hospices and even at home as bodies can be transferred to hospital for tissue retrieval if parents want this. It seems timely to institute a culture of considering such donation as part of routine end-of-life care.

In NICU, term infants occasionally die from severe hypoxic–ischaemic encephalopathy, but heart valve donation is rarely considered, despite one bank accepting valves down to term. Furthermore, newer techniques mean such infants might potentially provide hepatocyte donation in the future.

More fundamental possibilities

Alterations in current ethical standards and legal guidance to increase organ donation from children should also be considered.

Recently in America NHBD heart donation from infants certified after only 70 s of asystole to minimise warm-ischaemic time has been reported.31 This led some to question the necessity of the “dead donor” rule,32 with suggestions there should be a radical change to the ethical basis upon which donation occurs. In the USA and UK, the “dead donor” rule10 forms the fundamental ethical tenet upon which organ donation, other than live donation, occurs. Essentially, organs can only be removed after death for the purpose of transplanting into another. Truog suggests, in a challenging parallel to the most vocal critics of neurological death,33 that BSD is no longer tenable. However, rather than suggesting we cannot diagnose those with the most severe neurological injury as dead and so must carry on supporting them, he argues we should permit removal of organs from “living people” undergoing the dying process. Such individuals would be certified after organ removal and subsequent discontinuation of ICU support. While this appeal to revisit the fundamental principles of transplantation is fascinating, it is unlikely to gain widespread acceptance within UK society.

Two other changes in paediatric practice are more readily realisable. First, the concept of neonatal and infant brain death is widespread with Canada,28 Australia,34 Europe,35 and the USA36 permitting BSD and hence HBD in term infants. In the UK the BPA guidelines19 mean certification is not recommended between 37 weeks’ gestation at birth and 2 months of age, as little evidence exists that brain death predicts somatic death (the original basis upon which neurological death gained acceptance) and there is often associated cardiovascular instability. This seems logically untenable: brain death no longer necessarily predicts somatic death in other scenarios37 and PICU and NICU have been revolutionised since concepts of BSD evolved. Absence of new data cannot refute the concept of neuro logical death, indeed one might ask for arguments supporting the uniqueness of infants under 2 months, especially compared to those of 3 months. It would surely be reasonable, as in the countries above, to permit certification by clinicians happy to do so. Certainly there are term infants, such as those with bilateral cerebral infarcts due to vein of Galen malformations, in whom BSD seems clear. Furthermore, dealing with the cardiovascular instability associated with tonsillar herniation is part of brain-dead donor management,38 and seems an unlikely premise on which to deny neurological death. This requires urgent ethical discourse, as suggested by ODTF recommendation 3, involving the Royal College of Paediatrics and Child Health (RCPCH) ethics committee.

The second change is increasing donation from coronial post-mortems; however, road traffic accident investigators, coroners and their officers and medical teams all have a veto on this process. The investigation of accidents is afforded preeminence over organ donation, although little data exist to suggest organ and tissue retrieval significantly hampers any due process. ODTF recommendation 14 should include consideration of paediatric specific issues with coroners.

Conclusion

Children continue to die and suffer severe impairment due to poor rates of organ donation and transplantation in the UK. There is a unique opportunity for paediatricians to help address this as part of the overall national drive for increased organ donation. Changes in attitude, practice and possibly ethical and legal norms are required in the UK to realise this aim.

References

Supplementary materials

Footnotes

  • CJD, Creutzfeldt–Jakob disease; DTC, donor transplant co-ordinator.

  • Competing interests None.

  • Provenance Not commissioned; externally peer reviewed.

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