Resolving conflict about treatment for seriously ill children
BMJ 2022; 378 doi: https://doi.org/10.1136/bmj.o2000 (Published 11 August 2022) Cite this as: BMJ 2022;378:o2000
On Saturday 6 August, another high profile case of conflict between parents and doctors about the treatment for a seriously ill child came to an end after treatment was withdrawn from 12 year old Archie Battersbee. Archie is the latest in a series of such cases in the UK to reach public attention in the past five years.
Media attention given to cases like this can give the impression that conflict about treatment for critically ill children is common, and that the UK is unusual in having so many disputes. But although it is difficult to be sure (there are little or no comparative data), both of these impressions are likely incorrect. Futility disputes are well described and occur regularly, albeit infrequently, in many other countries.1
The majority of cases of disagreement are not reported because they do not end up going to court. However, reflecting on the outcome of less high profile cases is important, since it may point to ways of resolving disagreement.
Conceptually, there are five different possible ways that conflict may end.
Conversion
It is entirely natural and understandable for many parents to initially respond to the news that their child is not going to recover with denial, rejection, and disbelief. But with careful and sensitive communication, empathic support, and time, 95% of disputes are able to be resolved.2 Families come around to accept that withdrawal of treatment would be best for their child. It may be helpful to identify a single senior health professional to provide consistent communication.3 Sometimes additional investigations or opinions help to resolve parents’ questions.
Capitulation
For a proportion of cases, while health professionals believe that it would be best to withdraw intensive care, they may ultimately agree to continue treatment. There may be a degree of uncertainty about the outcome for the child, or reasonable disagreement about what course would be best.4 There may be a plan to continue treatment for a time limited period,5 then review and reassess. Alternatively, there may be a decision to insert a tracheostomy and embark on long term ventilation or transfer the child to another centre. In such cases, involvement of palliative care teams is critical to enable parallel planning and support in the event that at a future time point decisions will be need to be revisited.6
Compromise
Decisions about life sustaining treatment are binary (continue/provide v stop). However, there may be forms of compromise possible. For example, agreement not to escalate treatment, or to provide some forms of treatment, but not others.7 When communication has broken down, solutions can be difficult to identify; that is one reason why independent mediation has an important role.389 Such mediation may prevent disagreements from escalating, but is not successful in all cases. In Archie’s case, it was offered, but rejected at an early stage.10
Crisis
The nature of these cases is that the children have life-limiting illnesses and are critically ill. As a consequence, some disagreements reach a kind of resolution when the child deteriorates, either inexorably and progressively, or sometimes suddenly and dramatically. Such a deterioration can provide a natural ending to conflict without parents having to make a decision that they do not agree with. But one risk is that this will end up with the child dying in a way that is distressing to both health professionals and parents (for example, receiving futile attempted resuscitation, and without parents present). It is crucial in all such cases to (if possible) discuss in advance this possibility, and try to reach a mutually acceptable agreement on how to manage it.
Court
Finally, as Archie’s case illustrates, there is the option of the court. If the first four options have all been excluded, this option, no matter how unappealing, may be the only one remaining. Although there remain problems, the UK is commendable in having a clear, transparent, and generally consistent legal process that strictly focuses on the interests of the child.1 Some of the proposals for legal reform in the wake of the Alfie Evans, Charlie Gard, or Archie Battersbee case would give greater weight to parental autonomy in decision-making or accommodate religious objections to withdrawal of treatment by providing continued support within the NHS. That would avoid high profile legal disputes, but at the cost of requiring health professionals to provide treatment that they believe would be harmful or not benefit a child. It would also harm other patients by preventing them from accessing scarce medical resources—for example, intensive care beds.4
Protracted disagreement about medical treatment is distressing for both families and health professionals, and potentially harmful to children. We should certainly seek to resolve such disagreement in one of the ways described above. But we should also recognise that decisions about life-sustaining treatment for children are difficult, that disagreement in some cases is probably inevitable, and that there are no simple solutions.11
Footnotes
Funding: This research was funded in part, by the Wellcome Trust [203132/Z/16/Z] and by the Australian Research Council [DP190101597]. The funders had no role in the preparation of this manuscript or the decision to submit for publication. For the purpose of open access, the author has applied a CC BY public copyright licence to any Author Accepted Manuscript version arising from this submission.
Competing interests: DW is a member of the Medical Ethics Committee of the British Medical Association, and the Ethics and Law Advisory Committee of the Royal College of Paediatrics and Child Health. He is chair of the Clinical Ethics Advisory Group at the Oxford University Hospitals NHS Foundation Trust. He has provided occasional medico-legal expert opinions in cases of disagreement about medical treatment for children (none of those discussed in the paper). He receives royalties as the author of Ethics, conflict and medical treatment for children: from disagreement to dissensus (Elsevier).
Provenance and peer review: commissioned, not externally peer reviewed.