August 2, 2022

expert reaction to the latest in the Archie Battersbee case

Archie Battersbee’s life support can be withdrawn today after the UN’s request was rejected by UK’s Court of Appeal.

Comments sent out 04/08/2022:

Prof Neena Modi, Professor of Neonatal Medicine, Imperial College London, said:

“A hospice is a specialised centre providing care, comfort and solace in end-of life situations.  However, transfer to a hospice would not benefit a patient who is in a precariously unstable condition, and who has no brain functions, hence cannot hear, feel, see, or smell.  The risk of sudden death, possibly in a busy hospital corridor, or in an ambulance, would be high and if this were to happen it would also not benefit the patient’s parents or family.

“Discontinuing life-support in the controlled environment of a hospital in the presence of family and loved ones would give them opportunity for quiet, calm, and privacy in which to say farewell.”

Prof Alastair Sutcliffe, Professor of General Paediatrics, UCL, said:

“We do not live in a perfect world.  The information from the RLH suggests poor Archie is very fragile indeed, and there would be no reason for them to present a misleading picture.

“We acute care children’s doctors are well aware of the risks of moving patients from one place to another, especially when they have no critical reserve.”

Prof Dominic Wilkinson, Professor of Medical Ethics and Consultant Neonatologist, University of Oxford, said:

“Last night, the European Court responded to Archie’s parents requests 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 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, and a statement from the hospital, 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.”

Comments sent out 03/08/2022 regarding journalists’ questions about whether other countries can ‘offer treatment’:

Prof Alastair Sutcliffe, Professor of General Paediatrics, UCL, said:

“Any statements about ‘treatment’ in other countries would be implausible – if it is a reference to more of the same (more life support), then that would be possible although in all probability at ongoing cost.

“But ‘treatment’ would imply there is a treatable condition.  The UK is a world leader in health care and indeed the research behind therapies.  I am confident no stone has been unturned with regards to treatment, and evidently there is not one.  Alas.  If a country did offer continued life support that would not mean there was hope of recovery.

“It is nice of these compassionate countries to offer their help, but alas they have no expert advances not accessible to my knowledge than we already have in the UK.  Archie does not have a rare disease where one country has access to a cure and others do not, he has brain damage from asphyxia/hypoxia and there is no known antidote to that in such a severe case.”

Prof Neena Modi, Professor of Neonatal Medicine, Imperial College London, said:

“Third party interventions in tragic cases such as that of Archie Battersbee are not only unhelpful; they are harmful, and self-centred.  They usually involve parties who do not have knowledge of the full details of the case and therefore cannot legitimately comment on the medical situation.  These third parties usually also have strong personal convictions which lead to biased decision making that is not focussed on the rights and best interests of the child, but instead is centred upon their views and beliefs.  They give false hope to grieving parents, adding to their anguish, their uncertainty around whom to trust, and make it immensely harder for them to accept the realities of the situation.”

Comments sent out 02/08/2022:

Prof Alastair Sutcliffe, Professor of General Paediatrics, UCL, said:

On looking after seriously ill children:

“There are as part of the work of paediatric acute care teams two broad types of seriously ill children.  Those who are suddenly seriously ill, from for example infections or accidents.  In those their care is led by a team, is intense, very stressful and potentially very rewarding as well as conversely tragic.  All hospitals receiving these children follow standardised guidelines for resuscitation and send them where needed to regional PICUs, it is part of our work and we all have revalidated training 3-5 yearly to do this.

“The other type of child is that with a serious illness which may take time to get better such as childhood cancer, or tragically those who will not recover despite best efforts and all advanced therapies known to man.  These can be children who are born brain damaged, or develop cancer, or rare metabolic diseases or other.  It is a salient fact that 60% all children (and by default people) born with a rare illness are dead by aged five years.

“Archie is an example of a child who had an accidental probably near strangulation at home and was then brought in.  A situation we all dread.  Some children do have remarkable capacities to recover in some situations and I for one have seen this multiply when all seemed to be lost if they were previously healthy BUT this is not true for all, and Archie is reported to have brainstem death which is different and unfortunately means something quite specific.  The brainstem which is at the base of the brain and does not do the conscious thinking and high level processes, but the basic functions such as breathing, is needed by us all, and should it be damaged it is a bit like a ‘hanging fracture’ but higher up the brain above the spinal cord.  Damage which has occurred and not recovered is incompatible with life.  That part of the brain is often the last bit to fail before death.

“Throughout our careers we have to work with ‘parent experts’ who are diligent and dedicated, knowledgeable albeit anecdotal individuals who know every nuance of their child’s care.  However they are not and should never be in a position to make non medically supervised decisions about their child.  This can result in conflict if for example, they are in denial about the reality of a very hard situation because they can’t let go.

“Usually there is a gentle seeding of ideas followed by a progressive process towards resolution and acceptance when a child is judged incurable and terminally ill.  This process can be undermined by non-experts, non-medical practice and other more serious undeclared interests.  This is rare and as a Profession, we are bound by strict confidentiality.  Nonetheless in the Archie situation all details of his care and health will have been heavily weighed up by an expert medical and legal team independent of the clinicians involved.”

Prof Neena Modi, Professor of Neonatal Medicine, Imperial College London, said:

“UK law is admirable in recognising the rights of the child and acting on the basis that the best interests of the child cannot be overruled by parental wishes.  This may at first appear to be a callous response in the face of unbearable parental grief, but that same grief often makes objectivity difficult.  When parents and a child’s doctors disagree – and this is rare – the best recourse is to an independent decision where the child’s interests are placed first.  When life sustaining treatment is futile, continuation is not in the patient’s best interests.”

Prof Dominic Wilkinson, Professor of Medical Ethics and Consultant Neonatologist, University of Oxford, said:

“In the latest legal hearing, in a long running dispute about treatment for brain-injured 12 year old Archie Battersbee, the Court of Appeal yesterday rejected his family’s request to delay stopping treatment until a UN committee had reviewed his case.

Why was the appeal rejected?

“Archie’s parents had previously mounted a series of legal appeals against a decision by Justice Hayden in mid-July that it would be best for Archie to stop the life support machines that are keeping him alive.  That included an appeal to the highest court in the UK, the Supreme Court.

“Yesterday, the Court of Appeal concluded that it would be wrong to further delay the decision.  The UN committee had no legal status in UK law, and therefore would not change the decision about what would be best for Archie.

What is the underlying issue?

“Archie sustained profound brain damage from lack of oxygen in early April, when he was found at home with a ligature around his neck.  All medical experts who have examined him have agreed that he has absolutely devastating brain damage, from which there is no possibility of recovery.  Indeed, the doctors treating him initially believed that the brain damage was so severe that he was brain dead.  However, the Court of Appeal in another hearing back in June found that Archie could not be declared brain dead (because the usual testing for brain death was not possible).  But even if he is not brain dead, there remains a question about whether it is right to keep him alive.

How common are these disputes?

“Tragically, for a small number of children who become critically ill each year, medicine reaches its limits.  For children like Archie, doctors cannot make them better, and advanced medical techniques and technologies may end up doing more harm than good.  Sometimes, all medicine can do is to prolong the inevitable.

“It is entirely understandable that loving parents would struggle to understand or accept this news.  Many parents might not initially accept the advice of doctors that it may be best to let their child go.

“But in the vast majority of cases, with patience, compassion, careful explanation and empathic support, parents and doctors are able to come together to agree on what would be best for a seriously ill child.

“In a small number of cases, medical teams may need external help to reach an agreement.  For example, they may draw on a clinical ethics committee, or independent mediation, or may seek second opinions from specialists in other hospitals.  In a tiny proportion of cases, if parents and doctors cannot agree what would be best, for a child who is stuck on life support in an intensive care unit, the right thing to do is to ask the court to help.  The court in the UK has an important role in resolving disagreements about treatment.  The court does not side with either doctors or parents.  It focuses exclusively on what would be best for the child (the child’s best interests).

Why all the legal appeals?

“The UK legal system allows decisions to be appealed to higher courts.  In these cases about treatment for children, it is very rare for higher courts to reach a different decision than the initial judges.  In cases, like the Charlie Gard case, or Archie’s case, parents may seek appeals repeatedly in the hope that the court decision will be overturned, or perhaps as a way of buying extra time.

“In Archie’s case, it appears that his parents may have run out of options, though it is theoretically possible that they will attempt to appeal again to the Supreme Court, or appeal to the European Court of Human Rights.  Even if those appeals do go ahead and delay things further, they are extremely unlikely to change the ultimate decision.

“Sadly, the underlying situation for Archie remains unchanged.  The best, and only course of action that can help him now, is to let him go.”

Declared interests

Prof Neena Modi: “I am a neonatologist who has been involved in many end-of life decision-making situations; president-elect of the European Association of Perinatal Medicine; immediate past-president of the British Medical Association; and past-president of the Royal College of Paediatrics and Child Health.”

Prof Dominic Wilkinson: “No conflict of interest.”

Prof Alastair Sutcliffe: “I have no conflicts of interest.”