Ethical versus psychological issues in paediatric organ donation: an analysis of UK and Swiss practice

Introduction

The official Swisstransplant website states: ‘Organ donation is (also) possible in children … The only exception is for newborns up to 28 days old; in this case organ donation will not be considered on ethical and medical grounds’. ¹ The numbers of paediatric donors (i.e. younger than 16 years old) in Switzerland during the years 2014–2018 are 3 per year, with an average age of 8.7 years (range 2 months–15 years), from a total pool of around 100 donors yearly, with an overall national 18.6 donors per million population in 2018. ²

Of note, in Switzerland, a program of paediatric donation after circulatory determination of death donors was started in 2017, with two known paediatric donors at this time so far. These facts suggest that in Switzerland, there seems to be a rather low overall acceptance of paediatric organ donation by intensive care units (ICUs) teams and society. This means that some Swiss children, whose only chance for survival is an appropriately sized organ, die. ³ Furthermore, information regarding paediatric organ donation in Switzerland is arguably incomplete with no readily available data to establish the overall number of potential donors in the country, or more crucially within individual units to enable unit performance in donation processes to be compared.

In the UK, paediatric donation after circulatory determination of death has been taking place for over a decade, and there is a mandatory data set of all potential organ donors in paediatric intensive care units, with some neonatal intensive care units joining in. While such data are publicly available, it sadly shows failings of possible donation at every stage of the process, despite the overall investment in organ donation that has increased adult donation rates. ⁴ The overall deceased donation rate in the UK is 24.3 donors per million, compared to 18.6 in Switzerland – both lower than in the best performing European countries, ⁵ though specific comparative data does not exist for paediatric donation. There are several functional differences between paediatric donation in the two countries, notably (i) paediatric donation after circulatory determination of death is carried out more frequently in the UK; and (ii) donation can occur at the younger age of 38 weeks of corrected gestational age, as neurological determination of death in infants is accepted in the UK. ⁶ One major difference is also the national organisation model: in Switzerland, every hospital with an intensive care unit and emergency department is legally due to have its own organisation for organ donation and also to assure quality standard. This leads to a lot of regional discrepancies in the donation process. The UK, on the other hand, has a more homogeneous organisation at a national level, and this probably results in more standardised and efficient process. The timing for referral might also differ as in Switzerland, local organisation will be first notified in a variable time frame, and the referral to Swisstransplant will occur only once family consent is obtained. In the UK, the referral is done to the national organisation right after identification of potential donor. This might help to decrease the numbers of missed potential donors.

In this paper, we identify and analyse many different ethical and psychological issues in the paediatric deceased donation pathway. While there are indeed many complex ethical issues involved, many so-called ethical issues actually represent psychological obstacles that affect healthcare professionals. ‘That would be unethical’ is often used as an excuse in situations where doing what is most ethical involves psychologically difficult situations that clinicians may not want to confront. The UK Donation Ethics Committee has debated and published recommendations about some, but not all, of these issues. ⁷

We focus on Switzerland and the UK as two European countries with well-developed cutting-edge health care systems to illustrate how two different approaches in similar countries deal with both psychological and ethical issues that arise in this context. To systematically address the various issues involved and to identify whether they are fundamentally moral or psychological in nature, our analysis follows the donation pathway in the chronological order that clinicians and families experience. Because of this chronological rather than thematic structure, we have signposted clearly whether identified issues are primarily ethical or psychological in nature as we progress through them.

It is worth noting that while the various constituent countries of the UK are moving to presumed consent/opt-out systems, and this is currently also being debated in Switzerland, this does not apply to child-donors.^8,9

Identification and referral of potential paediatric donors

Chronologically, the first potential ethical issue arises before the family is involved. Should a potential child organ donor be identified as such, and a referral made to the organ donation team before donation is mentioned as a possibility to the family? Some clinicians would argue that no pathway towards donation should begin without the family’s consent, and that a family might be angry to find out that any type of donor screening was initiated before they were consulted or before a definite plan to withdraw life-sustaining therapy had been agreed. Also, there are concerns that routine consideration of donation before life-sustaining treatments are judged futile may reduce public trust in clinicians. ¹⁰

In fact, identification and referral of a potential child donor for screening before involving parents can enable the donation team to approach the family with crucial information. Some children cannot become donors, and this can be sensitively explained to the family, whereas for others the sooner processes to support donation are underway, the less delay in later donation acceptance for the family.

Furthermore, when asked about these aspects of organ donation approaches to bereaved families the parents of dead or dying children have an overwhelmingly positive view of discussions about donation, suggesting that parents ought to be informed even where donation might not be feasible so that they know it has been considered. ¹¹ While referral before discussion with parents is preferable, referral after consultation with parents is certainly ethically preferable to not discussing donation or even not notifying donation services at all.

A handful of clinicians may have either conscious or unconscious bias against considering organ donation because of personal attitudes towards donation processes, especially donation after circulatory determination of death. ¹² It is inappropriate that their concerns about the supposed impropriety of donation in this context can lead to complete failure to refer or to mention donation to families. If a clinician is against such donation, we must encourage that he or she openly declares this, and the system allows another supportive clinician to take over and support the family in their choice, as for any other situation where conscientious objection is permitted. ¹³

Routine referral procedures before discussion with parents would also enable a more transparent discussion of clinicians’ concerns. Specifically, some clinicians and ethicists have anecdotally suggested that as mothers who have lost a child at less than one month of age will likely be suffering from postnatal depression, that donation should never be mentioned in this context. However, there is no scientific background to this; therefore, we consider this attitude to be unjustified paternalism that could make the grieving process harder for families, as evidence suggests that many families who consent to donation benefit from doing so. ¹⁴

In the UK, systems are being trialled that require any clinician who fails to refer a potential donor to write a letter explaining why he or she did not do so. This approach may be helpful for the Swiss context, or other countries, where such a system has not been implemented, as it encourages both accountability and ethical reflection. However, the actual effectiveness of this has not yet been formally assessed.

Another suggested reason for failing to refer or even to discuss donation with families is lack of resources. These include the need for qualified physicians or donor coordinators and also arguments about the ‘inappropriate’ use of the limited valuable resource of an intensive care bed for a terminally ill patient when others may need it. The latter was such a concern that both the UK Organ Donor Task Force and Swisstransplant addressed the issue by providing funding to mitigate it to institutions that facilitate organ donation. In the UK, the bed-day cost for potential organ donors occupying intensive care beds is directly covered by donation services, in Switzerland and the UK funded donor coordinators facilitate qualified discussion with families. At an overt level, it seems this is more of an issue in adult intensive care units than in paediatric intensive care units; however, it is hard to quantify the effect of external pressures during winter with few remaining paediatric intensive care unit beds, or indeed during a pandemic.

Accepting cessation of life-sustaining therapy and approaching families

The next step in the process will be the recognition and acceptance that continuing life-sustaining treatment is no longer in the child’s best interests. This most frequently involves several consecutive meetings between the medical teams and family as the prognosis following intensive care unit admission becomes clearer. ¹⁵ In the case of brain death, most families will accept that the patient is dead, but there may be some specific difficulties if family members disagree for religious reasons.^16,17

In the paradigm of donation after circulatory determination of death, any decision to withdraw life-sustaining treatment must be made together with the parents before, and separate to, any considerations about organ donation. This part of the donation process, in our experience, usually does not create any ethical or psychological disagreement and is similar in Switzerland and the UK.

Approach regarding donation

Next, assuming that there are no contraindications to donation following the earlier referral, the approach regarding organ donation must be made. In Switzerland, parents are usually approached by an attending physician together with a specialised nurse when and if available, but each hospital can choose how they want to proceed. In cases where the child carried an organ donor card (Switzerland) or had registered (UK and Switzerland) as a potential organ donor, the assumption should be that the child’s wishes will be respected (of note, in Switzerland only those aged over 16 can legally register to donate or own a donor card, though some carry a donor card to indicate their views on donation even at a younger age ¹⁸ ). However, in practice in both countries, the consent of the parents is always required.

One of the main concerns raised in the discussions with parents about organ donation is that donation will further harm their child, or their child’s body, this is understandable as the discussion often is the culmination of a very distressing period, towards the end of their child’s life. This might be a particular concern in donation after circulatory determination of death when initial donation discussions are occurring when the child is still alive. Usually, a compassionate explanation about how there will be no increased distress for the child or compromise to the overall care the dying child receives if donation after circulatory determination of death proceeds successfully will allay these fears. There is little in the literature about this issue, but what exists supports donation being considered. ¹⁹

Another critical issue is that many parents who do not consent to donation ultimately regret their decision.^20,21 Parents should not be told that they will feel better if they consent to donation – that can never be certain – but it is reasonable to inform them that many parents do derive some positive feelings from donation. The discussion must always be sensitive to the parents’ particular context, and must never stray towards applying pressure to donate.

Very little specific research has addressed the outcome of donation on either the parents/families of child donors or for the staff caring for them. There is some evidence suggesting long-term psychological benefits in donor families, ²² though one early Dutch study revealed no such benefit. ²³ Yet of note, the families of adult donors report the desire for something positive to come from their loss as a strong motivational factor.^24,25Further, a recent qualitative study with families in which donation after circulatory determination of death could not proceed suggested that there are harms associated with non-donation. ²⁶ In an Australian follow-up study, non-consenting donation after circulatory determination of death families and few who declined later in the process regretted their decision. ²⁷ Thus, the argument that bereaved child-donor families somehow have a greater burden induced by the request to donate is not borne out by the evidence. ²⁸ In a thematic synthesis of qualitative studies on deceased donation, Ralph et al. found a thank-you letter and anonymised information about recipients to be important for bereaved families who wished for more support after donation; this happens in both Switzerland and the UK. ²⁹

Verification of death in donation after circulatory determination of death and other issues

There have been concerns about the timing of the verification of death after the withdrawal of life-sustaining therapy, particularly whether death can be verified safely in the short time frames required for successful donation after circulatory determination of death. ³⁰ However, the most robust data reassuringly show no return of spontaneous vital signs in this setting. ³¹

There have also been concerns expressed about what happens if the potential donor after circulatory determination of death does not die; this is a particular concern if the child has been transferred to the operating theatre for withdrawal of life-sustaining therapy. Ethically, the highest standards of end-of-life care must continue – including especially the provision of appropriate sedation and analgesia – and we would argue this necessitates readmission to the paediatric ICU. Indeed, this issue needs to be handled with great sensitivity with planning and briefing for both ICU and theatre staff, but most especially for the parents who can struggle if donation does not occur, usually because their child’s dying process takes a longer than compatible with the current regulations of donation after circulatory determination of death. ³²

Neurological determination of death

The concerns raised by some with philosophical objections to brain death are myriad and are also relevant to paediatric practice. It is important to note that in the paediatric population, the suggestion that brain death testing is in itself harmful has not been substantiated. ³³ Still, clear consistency in practice for what is essentially an infrequently performed examination with such crucial implications is mandatory. ³⁴ The UK has recently published online training videos in the neurological determination of death, with standardised guidance, including in children and infants. ³⁵ The Swiss Academy of Medical Sciences also has clear guidelines on the diagnosis of death. ³⁶ Many hospitals have excellent information sheets for families on this subject, but a compassionate explanation of the process and its implications remains the most crucial part of caring for the family and child undergoing brain death testing. The usual practice in many UK units (and some Swiss ones) is to allow the families to witness brain death testing and explain the steps to them, this powerfully shows the clinical situation while at the same time ensures the family know there is openness and transparency in this most sensitive of procedures.

Pre-mortem interventions and management of the brain-dead donor

If the parents do consent to donation, the next issue encountered is to what extent either pre-mortem interventions or post brain death interventions in donation after brainstem death (DBD) can be used to increase the chances of successful donation, which can be either the quality or number of donated organs.

In donation after brainstem death, the majority of organ optimisation occurs in the already deceased child, whose body remains supported by mechanical and other intensive care unit support, after completion of brain death tests. It might be anticipated that there would be less controversy surrounding their use than pre-mortem interventions to optimise organ function and donation potential often in donation after circulatory determination of death, where these interventions happen in a living patient. There is some debate about the extent to which cardiopulmonary resuscitation or extracorporeal membrane oxygenation may be used; while the deceased child can no longer be physically harmed, there may be concerns about human dignity and the treatment of a dead body. ³⁷

However, more challenging are pre-mortem interventions in the potential donor after circulatory determination of death. Arguably, such manoeuvres are not in the child’s strict medical interests, and it could be argued such interventions might cause suffering or loss of dignity to the dying child without providing direct therapeutic benefit.

The contemporary English legal definition of what must be considered in determining a patient’s best interests is helpful. The religious, social and cultural aspects that must be regarded alongside medical issues in the determination of best interests ³⁸ can lead to a more altruistic expression of what is permissible for some families in opting for organ donation from their dying child. In Switzerland, the Swiss Academy of Medical Sciences has issued guidance on which interventions are acceptable. ³⁹

In children, the key difference is that while the child cannot consent in most cases, the law designates parents as legal decision-makers. This, in turn, means that a detailed conversation about the pros and cons of various pre-mortem interventions is possible with the consenting individuals, unlike in adult practice. Ostensibly, the use of such interventions in children is, therefore, less problematic than in adults, at least concerning consent. ⁴⁰

Pre-mortem interventions are particularly crucial in donation after circulatory determination of death to prevent damage to organs due to warm ischaemia. There is a range of interventions, each raising its own ethical and psychological issues, including changing the location of death; delaying the time of death, and interventions to improve the quality and quantity of organs eligible for transplantation. Perhaps the primary ethical concern about pre-mortem interventions is that they risk harming children without their consent and without conferring any prospect of medical benefit. One key point to bear in mind is that any intervention deemed permissible in adults should not be ruled out simply because the patient, in this case, is a child – indeed, specific consent from parents for interventions can be obtained, arguably giving a more considerable ethical justification for proceeding than is present with an incapacitated adult’s substituted best interests decisions.

Changing the location of death might not seem like an intervention, but it is something that can be done before death to maximise the chances of successful donation and transplantation. If a withdrawal of life-sustaining treatment takes place in an operating theatre, then less time is lost before the organs can be transplanted. Moving children in this way is unlikely to cause harm if parents are prepared in advance and as long as the location provides a sufficiently calm environment that does not increase the distress of parents.

As well as changing the location of death, the time of death can also be modified. Ventilation can be continued beyond the point at which it would usually be withdrawn to delay death until organs can be retrieved. This is already done and considered permissible for religious reasons and to allow relatives enough time to get to the hospital before death occurs. Therefore, its use to enable donation, where lives could be saved as a result, also seems ethical. Next, the introduction of ventilation for the sole purpose of preserving donation as an option (elective ventilation) is sometimes seen as instrumentalising the dying child and might be considered non-ethical.

Nonetheless, if continuing ventilation to facilitate organ donation is ethically acceptable, there is no clear moral reason to not permit elective ventilation, given commission and omission are ethically equivalent. More invasive interventions such as extracorporeal membrane oxygenation and cardiopulmonary resuscitation are more controversial, but not common child-donation practice in either Switzerland or the UK. Both are arguably acceptable with fully informed parental consent provided there is no increased suffering for the child, though the Swiss guidance prohibits two specific procedures (see next paragraph).

Finally, there are also interventions to improve the quality and quantity of organs donated, which can be grouped into three categories: (i) pharmaceutical interventions, (ii) invasive measures such as bronchoscopy, (iii) insertion of catheters to prepare donation. These measures must be thoroughly discussed with the parents of the dying child, but are an ethically acceptable means to improve the outcome of donated organs given fully informed consent and the minimisation of potential distress, i.e. with general or local anaesthesia. ⁴⁰

In Switzerland, the law states that preparatory medical measures before brain death can be done only if consent is obtained, there is no risk of hastening death or leading to a permanent vegetative state, there is minimal risk and burden for the patient and the measures indispensable for successful transplantation. The Swiss Academy of Medical Science guidelines states that only two procedures do not fulfil these criteria: the placement of an arterial cannula for cold perfusion (regional extracorporeal membrane oxygenation) or mechanical resuscitation, which are hence not allowed without donor consent before death.

Opt-in, opt-out and public information

Scotland and England, and potentially Switzerland, are following Wales and moving to an overall ‘opt-out organ donation’ to replace the ‘opt-in standard’ for adult patients. This is a potential risk to paediatric organ donation, which is unaffected by this regulatory change (parent consent remains necessary), as the already low public profile of paediatric donation may decrease further with a widespread focus on opt-in/opt-out. ⁴¹ However, the moral necessity of providing information to the public (including physicians) to counter this provides a great stimulus to deliver educational tools for society in issues about end-of-life issues including all aspects of organ donation, including paediatric donation. School children who, after all, are the parents of the future should be included.

One issue that affects both children and adults, but is of far greater importance in paediatrics, is the prevention of organ donation opportunities by legal/forensic processes. These include accident investigation following road traffic accidents but are particularly restrictive in the setting of abusive head trauma in infants. A further complication in this situation is that the parents may be possible perpetrators who also need to consent to organ donation. The balance of thorough investigation and the need to consider prosecution in the face of sometimes spurious claims of alternative causes for abusive head or other trauma should be balanced against saving the lives of other children. Sadly, in the UK, the former frequently dominates with inadequate consideration of the latter, though donation does occur. In Switzerland, donation after forensic processes is similarly possible if the judicial investigator agrees. The necessity of the prioritisation of forensic investigations, when balanced against the deaths of other children, is not justified in the literature, and may well be an exemplar of a psychological barrier to paediatric organ donation that fails to meet a rigorous ethical analysis.

Conclusion

Ethical and psychological issues in the paediatric donation pathway must be differentiated since confounding these issues can hamper the opportunity of bereaved families to consider donation. We believe it problematic to suggest that ‘ethical’ concerns prevent even discussion of organ donation with the parents of children approaching their end-of-life on the intensive care unit. Many concerns seem to represent vague psychological qualms rather than actual ethical issues. Where the ethical objections are real, they should be discussed thoroughly with the parents, and if they are personal, another clinician should be allowed to deliver what is acceptable care. If there are broader sustainable, ethical concerns, these must be reviewed openly by both the institution and national donation policy teams, aided by expert ethics support.

Institutions and donation teams must also be aware of covert, perhaps subconscious, obstruction to organ donation and ensure that regular monitoring of every potential donor, as does occur in the UK, is in place to analyse any trends. However, on its own, this is not a panacea.

In most situations, the most ethical approach requires more, not fewer, efforts to facilitate paediatric organ donation. We have suggested in this paper that there are few genuine ethical objections to paediatric organ donation. However, what are in reality psychological issues may be proffered as an ethical concern, they should be treated considerately, and an explanation about the differences between ethical nuances and psychological concerns explored. Ultimately, processes should be put in place to support those with such disquiet, but also to practically bypass anyone who cannot deliver what is in effect life-saving care for other children and adults, and often the desired outcome of the bereaved family. Real ethical issues should, of course, be subject to comprehensive, in-depth analysis and clear national policies formulated.