by Dominic Wilkinson @Neonatalethics
Tonight, the European Court responded to Archie’s parents’ request for a final appeal against the decision by a series of UK courts to end the treatment keeping him alive.
What happened in the European Court?
The European Court provided a rapid answer to the application by Archie’s lawyers earlier on Wednesday. It said that it would only issue an interim measure (a legal halt to the planned withdrawal of treatment) in exceptional circumstances, where there is a real risk of irreversible harm. In Archie’s case, the European Court denied the application for an interim measure. It would not interfere with the decision of the UK’s national courts.
Although the court press release did not say it in so many words, the implication is twofold. First, this case is not exceptional. Other cases around life-sustaining treatment for children have attempted to appeal in the European Court. None of those appeals have been successful. Second, the plan by the courts to allow withdrawal of treatment for Archie is not posing a risk of irreversible harm. Quite the opposite. The UK courts have reluctantly decided that the least harmful thing they can do at this point is to stop the invasive treatments that are keeping him alive, and to let him go.
What happens next?
At this point, there appear to be no further avenues for legal appeal.
In some of the previous cases (for example the case of Charlie Gard), after appeal to the European Court was unsuccessful, families have attempted to bring new evidence back to the court and delayed decisions further. But in none of those cases, has this changed the final outcome. In Archie’s case, his legal team have said that they wish to file a legal application to bring him to a hospice for his end of life care.
What is the question about a hospice?
Hospices are specialised centres that provide care for children or adults who have illnesses that cannot be cured and that will shorten their lives. Hospices provide an invaluable source of comfort and care when other types of medicine may have run out of options.
Hospices provide palliative care. This includes support for difficult to control symptoms . That can be provided sometimes over a long period of time, and patients may spend periods of time in hospice and periods of time at home. Hospices also provide outreach support to many children and adults with terminal illnesses. Again, this can be over a period of months or years.
Hospices also provide care for patients at the very end of their lives, when they are dying. This is end of life care.
For children like Archie, critically dependent on life support machines, sometimes it is possible to take them to a hospice for their end of life care. The life support machines are removed in the hospice, and the child and family provided with specialised medical and nursing care. Some children can survive for a period of hours or days or even longer after the machines are taken away. The hospice can provide a dignified, private space for the family to spend with their child, to make the most of the last precious time that they have with them. As a specialist in intensive care for babies, I have been involved in such transfers on a number of occasions. This can be enormously helpful for the families and the child in some cases.
Archie’s parents wish to take him to a hospice. That might enable his family to spend his final moments in a place that was free of the conflict and bitter disagreement that has marked his recent months in hospital.
If it is possible to transfer Archie to a hospice, this should certainly be arranged.
However, based on the specialist reports about Archie’s physical condition in the court hearings, I suspect that this will not be possible. Put simply, the risk is that Archie would die in the back of an ambulance on the way to the hospice. He has been able to be kept stable over this long period of time only through constant careful attention of intensive care staff. His condition is fragile.
If he were to die while being transferred, that would be a potentially stressful, distressing, and undignified end to this sad and sorry saga. It would be bad for Archie and bad for his family.
What about treatment in other countries?
Archie’s parents have claimed that doctors in other countries (for example Japan, Italy) have offered to treat Archie.
But if a move to a local hospice would be risky, an international transfer would be even more so.
More importantly, there are no treatments in Japan or Italy or anywhere else that offer any prospect of helping Archie. He has devastating damage from lack of oxygen to his entire brain (and further severe damage to his spinal cord). Although at some point in the future that might change, at the present, very sadly, there is no medicine on earth that could undo that damage and help Archie. All the treatments overseas would do, would be to keep his physical body alive, while offering no possibility of him recovering. That is something the UK courts have carefully considered already and ruled out on the basis that this would be harmful to Archie, and not in his best interests.
No conflicts of interest
Very sadly any discussion now is mute as far as Archie Battersbee is concerned, but of value for those sad cases who find themselves in a similar situation in the future.
If the doctors opinions are accepted, and the parents feelings are taken as the only view, a bizarre situation could be perceived where a living body was being indefinitely mechanically maintained, so in worldviews where only the individuals rights are being given the highest precedence outcomes which lean towards the humane will always be more likely than any real social human warmth and compassion for a small social group worldview. And yet this perception ignores the widely accepted fact that any normal child would ordinarily strive to be with their family in times of real stress, that is an undeniable human social group element, yet that human element becomes ignored in favour of humane action. How could that come about and what does that say.
Not having followed this case in its detail it seems from the limited yet immediately available public perspective that there is an argument to be made that a larger social groups strong, consistent and continuing actions throughout the process, which are argued to be in the interests of the patient, and eventually extend to the total control of all remaining circumstances, also act to reduce levels of risk to that larger social group itself, and so allow for the presented arguments to be perceived as self protective in making sure that the larger social groups actions are eventually proved to be right. That type of issue often arises with any compiled set of procedures which include many perspectives and are most often followed to the letter in high profile organisations whose name is seen as very important. Expert opinions of the variety of doctors, managers and the legal department collate into something which becomes very humane, but not so human. An ordinary deconstruction (one of those words) of the presented arguments masks this issue, unless the arguments are picked apart first in the ways particular worldviews would express them during the collation of that/those procedure(s).
It is to be expected that expert opinions, if informed by the right education which is correctly maintained, will nearly always coincide with the existing state of knowledge when presented with the same information. Within the limitations of its own expert knowledge no other outcome is acceptable without some factual proof of validity or considerably weighty evidence to the contrary, and the facts are under the control of expert judgement. And yet the doctors arguments that Archie is no longer there and his life is continuing because of their invasive life maintaining procedures, coupled with their imagined feelings (imagined because I do not know them), result in an incoherent argument (one of those disliked words previously expressed in a different way) a situation which becomes exacerbated when presented in some of the legal arguments developed around the humane treatment of the living body. How can Archie himself become distressed if it is accepted his brain is dead? So the argument about Archies distress indicates some acceptance of brain activity which would create distress for Archie.
A resulting situation appears where a humane argument may be presented as the only logical course, provided ongoing control may be applied to assure no unbalancing of the inherent values applied within that situation occurs. But that is what begins to happen where an effective legal defence pointing out those very weaknesses consistently comes into play leaving little room for anything other than political action to retain the balance. At this point issues such as originating causes, blame, investigations, and other emotively motivating issues for all the parties may become abhorrently (to other worldviews) deployed, so those are likely wielded amidst a screening of privacy.
From within this argument it would seem that any system which allows for the expression of a human element, yet fails to do so is not functioning in humanities interests. One would expect from that to see increased discussions of how to retain the human element in such circumstances; and one of the answers to that would be to dismantle the procedures producing the humane but not quite human outcome, and failing that to dismantle one of the organisational social groups presenting those circumstances, because the human element was becoming more distant for them. Another would be to skew all social groups into applying the same humane worldview in future. A very human paradoxical situation becomes visible, where all parts of the paradox would require to be included in considerations if the human condition itself were to continue to survive.
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