August 2, 2019

expert reaction to the Tafida Raqeeb case

Tafida Raqeeb is child currently in intensive care. Her parents and doctors disagree on the future of her treatment. There is a high court case pending to  provide arbitration. 

Comments issued on Friday 9th August 2019:

Laura Davidson, Barrister at No.5 Chambers, London, who specialises in medical welfare decisions, said:

“No hospital would suggest turning off life-support for someone who has a good chance of recovery, particularly a child.  This would be completely contrary to a doctor’s Hippocratic Oath.  Tafida’s clinical team has been caring for her for some time now.  Although parents usually feel that they know what is best for their child, most do not have medical training.  The law in England and Wales is that where doctors and the family cannot agree, and/or where serious medical treatment is involved, and/or the consequences of ceasing treatment are severe (such as where it will inevitably result in the death of the person who lacks capacity), the court must decide what is in the person’s best interests.  The court will look at all the circumstances, although of course the medical expertise and opinions of the clinicians will be important evidence.

“Sadly, the specialists looking after Tafida believe there is no further treatment available for her.  I understand from the hospital’s media statement¹ of 2 August 2019 that in this case, a second opinion has already been sought from other specialists independent of the Trust, and that they concur with the views of the treating clinicians that, sadly, there is no other treatment available for Tafida.  Obtaining a second independent opinion is always best practice and would be sought in these types of cases.

“In the Alfie Evans case, the parents were convinced that there was treatment available in Italy.  However, the treatment offered by the Italian doctor was in fact experimental.  Alfie’s parents were desperate for any possibility of hope, and fought hard to be able to take Alfie to Italy.  Ultimately, the Italian doctor involved was criticised by the court for having exaggerated the likelihood of the treatment working in that case.

“In Tafida’s case, again, the parents believe that there is treatment available in Italy.  The Barts Health NHS Trust media statement of 2 August 2019 states: “Upon review of Tafida’s medical records including brain imaging, four medical experts in Italy have unanimously advised that they are unaware of any treatment that is available to improve her condition.”  It is unclear whether or not these four medical experts are the same doctors at the Gaslini Children’s Hospital in Genoa, Italy, who have been reported in the media as having offered “radical rehabilitation” treatment.  If they are the same doctors, then either they were misreported, or they may have revised their medical opinions having spoken to her clinicians, and/or reviewed Tafida’s medical records.

“Ultimately, the court is the final arbiter.  Any decision on Tafida’s best interests must, in law, be on the basis of all the evidence before it in the widest sense; not just medical evidence, but also psychological and social – which includes, of course, the important evidence of the family.”

1 https://www.bartshealth.nhs.uk/news/media-statement-regarding-our-care-of-tafida-raqeeb-6270

Comments issued on Thursday 8th August 2019:

Dr Mike Linney, Consultant Paediatrician, and Registrar of RCPCH, said:

“It’s always sad and distressing where there is disagreement between parents and the doctors and/or nurses looking after their child.  This is not what anyone wants and maintaining an open dialog with parents in these situations is paramount.  It may well be in this case the doctors have sought the involvement of palliative care teams and with mediation.  Palliative care teams would be invited to be part of the care team when a child has a seriously life affecting condition where recovery despite current interventions is uncertain – it does not in any way mean that the therapeutic interventions are discontinued but is part of the important support process for children and young people.  Mediation allows an independent arbitrator with no preconceptions to listen to both the family and doctors with aims of finding common ground.  Ultimately if decisions cannot be made then recourse to the courts can be inevitable.

“In this case as in many cases that make headlines, the hospitals find it difficult, due to confidentiality issues, to share the information that they have which led to their decision-making process.  This leads to ongoing speculation and debate in the media, which in the end may benefit no-one.

“Second opinions are extremely useful and I would expect this to have occurred in this situation and the outcomes of this would be shared with families.  Second opinions that come from overseas jurisdictions without officially seeing the child and exploring the clinical information alongside the medical team are less informative.

“It’s important to remember that the medical and nursing teams looking after any child in this situation find it extremely distressing, they are there to look after and care for the extremely unwell, their only motivation is ensuring the best for their patients.”

Dr Richard Hain, All-Wales Clinical Lead in Paediatric Palliative Medicine, and Honorary Professor in Clinical Ethics, Swansea University, said:

“In cases like these, where there is disagreement between clinicians and parents, going to court is certainly one of the ‘proper’ procedures, in the sense that the Courts represent one forum on which the two conflicting ideas of the child’s interests can be discussed.  That does not mean it is the best procedure, and there are several avenues that should ideally be explored before that point is reached. Obviously the first of those is the opportunity to explore the various issues in dialogue between family and doctors. Another is a robust system of ‘advanced care planning’ involving the specialist paediatric palliative medicine team, that takes place over many weeks and months before a child’s death is anticipated and enables the points of view of family and doctors to converge. The third is the involvement of formal mediation services.  If those fail, as inevitably they sometimes do, then it would perhaps be appropriate to describe an application to the courts as the “least worst” option.

“Sadly these court cases seem to be becoming increasingly common.  As I understand it, there is nothing in law that means doctors must act in accordance with parental preferences if it means treating a child in a way that they (the doctors) feel is not her best interests.  But my experience is that under those circumstances doctors are not confident that their employers will support them if families choose afterwards to call the actions into question.  In some cases, families believe that for their child to remain alive as long as possible is the most important thing, whereas medical teams may believe the interventions needed to prolong life like that would cause so much suffering that they cannot be justified, given that they cannot offer the chance of a cure or even a return to normal life.  In that situation, the scope for mediation might be limited.

“In terms of independent experts and second opinions, I do not know the details of this particular case. But as a general rule second opinions are actively sought by the medical team under these circumstances.  Part of the problem here is defining what we mean by “independent“. Sometimes it is taken to mean an expert who takes a different view from the medical team. But of course what it should mean is someone who will take a judicial view, and give an opinion that is shaped by the facts rather than by the opinions of the two parties. Unfortunately, some families perceive that sort of independence to represent no more than solidarity among doctors, and may resent it accordingly.  It is of course also open to families to seek other medical opinions privately, as seems to have happened in this case with the Italian team of doctors who have reportedly been in touch with the family.

“One important role of palliative care in children is exploring with families what a child’s death might look like many weeks or months before it takes place, so that families have time to ask questions, express preferences and adjust to difficult realities.

“As death approaches, palliative medicine represents a change in the goal of care from preserving life to preserving comfort.  It doesn’t aim to hasten death, but neither does it aim to prolong life. It is sometimes wrongly taken to be synonymous with withdrawing care, because at the end of life some very invasive procedures whose discomfort was only justified by the possibility of recovery are no longer so justified and should be stopped. But in point of fact palliative medicine is an active alternative that usually means introducing new interventions, albeit ones that are typically less invasive and promise more comfort to the patient than what is justified when recovery is possible.

“The relevance of palliative medicine in situations of conflict is that it contributes to mitigation of a child’s suffering.  So if, all other things being equal, one course of action would make palliative medicine more difficult than the other, that will impact on which course is in the child’s interest.”

Prof Emily Jackson, Professor of Medical Law, London School of Economics, said:

“The law is actually very simple in these cases, though of course that doesn’t mean that these cases are easy to resolve.  If the parents refuse to consent to treatment which the child’s doctors believe to be in her best interests, or want her to have treatment which the doctors believe is not in her best interests, the first stage will almost always be to try to reach agreement, perhaps using mediation.

“If agreement cannot be reached, then an application can be made to the court, and the court will decide what is in the child’s best interests.  Medical evidence is clearly relevant to that decision, but the court will come to its own view, and it will not always agree with the doctors.”

Comments issued on Friday 2 August 2019:

Prof Dominic Wilkinson, consultant neonatologist, Professor of Medical Ethics, University of Oxford, said:

“In September, the high court will hear a legal challenge relating to the medical care of five-year old Tafida Raqeeb.  She has been in intensive care since suffering a severe stroke in February this year.  The doctors apparently believe that there is no chance of Tafida recovering, and believe that the machines keeping Tafida alive should be stopped, and Tafida allowed to die.  Her parents do not accept this, and wish to take Tafida overseas for continued treatment in the hope of her improving.

This seems to be another case like that of Charlie Gard and Alfie Evans.  How common are cases of disagreement in the medical care of children?

“When children are seriously ill, parents and medical teams make decisions together about the best way of treating the child.

“Those decisions can be extremely difficult, particularly when it seems that treatment may not be working, and merely prolonging the dying process.  However, in most cases, (about nine out of ten times) parents and doctors are able to reach decisions together about the care of the child.  Only in a minority of cases, do parents and doctors disagree about what would be best.  Even in those situations, with patience and time, it is usually possible to reach agreement.

“Disagreement persists only in rare cases.  In those situations, hospitals may reluctantly seek the help of the court to work out what would be best.  There are a handful of cases that come to courts in the UK each year.  These disagreements occur in other countries as well as the UK (for example, Australia, France, the United States).  They occur for adults as well as children.

Why do disagreements occur?

“The most common situation when disagreement arises is for a child who is extremely unwell.  If there appears to be no realistic chance of improvement, medical treatment and life support may not be helping the child, and may be doing more harm than good.  However, that can be very difficult for parents to accept.  They may not be ready to let go.

“It is very understandable for parents to want to hold on to hope.  They may seek new treatments or experimental treatments, or opinions from other professionals in the UK or overseas.  Sometimes, the information that they find will offer real hope for the child.  If it can be shown a treatment would offer genuine hope for the child, then, of course, it should be provided.  However, sometimes further treatment or experimental treatments offer only false hope.

Why don’t parents have final say about treatment? 

“Parents have a vital role in medical decisions for children.  In hospitals, and in intensive care units, doctors and nurses consult parents and involve them in decisions.  Much of the time, parents’ wishes are followed.  However, sometimes, health professionals feel that they cannot ethically follow parents’ wishes because that would be harmful to the child. 

In the UK, we do not think that doctors are always right, nor do we think that parents are always right.  If parents and doctors cannot agree about medical treatment for a child, we think that the fairest way of resolving this is to ask an independent third party to look impartially at all of the evidence and make a judgement about what would be best for the child.  That is the role of the court.

Who is right in Tafida’s case, her parents, or the doctors?

“The evidence about Tafida’s illness, her chance of improvement and the treatment offered in Italy is not publicly available.  Tafida’s mother has spoken out in support of her daughter, and she is entitled to do so.  Her doctors, though, are unable to comment on her care, as they are ethically and legally obliged to protect Tafida’s confidentiality.

“This means that at this stage, it is not possible or fair to make a judgement about Tafida’s situation.  Those of us who do not know the full details cannot say what the right thing to do is.  All we can do is to express sadness and sympathy at what must be an extremely distressing situation for both Tafida’s family and for the healthcare team looking after her.”

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

“Neither parents nor the medical profession have final arbitration in such cases and alas they do resort to court in exceptional matters.  Another example would be a Jehovah’s witness wanting blood transfusion for their child.

What is arteriovenous malformation, and why does it occur?

“A ruptured vessel in the brain, due to arteriovenous malformation, can be a catastrophic event which can make the brain irreversibly damaged.  It is similar to a huge stroke.

“Arteriovenous malformation is a situation whereby the blood vessels in a part of the body have not formed correctly and grow into a knot of vessels, some vein and some artery.  The problem is worse in a contained space such as the cranium (skull).  The vessels take up space, potentially squeezing other tissues.  If such a malformation bleeds a lot, catastrophic (brain) damage usually occurs.

How is level of brain health and function assessed in hospitals?

“A series of internationally accepted tests are performed, not once but serially .”

Under what circumstances is a tracheostomy recommended or not recommended?

“Tracheostomy are recommended when the coordination needed to breathe conventionally isn’t there, and/or there is obstruction in the mouth or nose.”

Dr Daniel Sokol, medical ethicist and barrister, said:

“It is imperative that any doctor who comments on what can be done for Tafida be suitably qualified and well informed.  They should have access to all the relevant medical records and they should examine the patient.  Only then should they offer their opinion.  To do otherwise is irresponsible and, in my view, unethical.  We have seen the harms that a remote, ill-informed ‘expert’ can cause in past cases.”

Laura Davidson, Barrister at No.5 Chambers, London, who specialises in medical welfare decisions, said:

Is this normal and proper procedure (i.e. going via the courts) in cases like these where

there is disagreement between parents and doctors?

“Yes.  In serious treatment cases, it is required.  There are 2 types of routes to the court; the Court of Protection which sits in the High Court and relates to adults who lack capacity, or the inherent jurisdiction of the High Court which plugs any gaps in the Act, and is the necessary route to court in Tafida’s case because she is not an adult.

“In cases which involve withdrawal of artificial nutrition and hydration (with death the

inevitable result), such as where someone is in a permanent vegetative state, even where the parties all agree, court endorsement of that course must be sought.  Practice Direction 9E supplementing Part 9 of the Court of Protection Rules 2007 deals with Applications Relating to Serious Medical Treatment.  Paragraph 5 makes it clear when cases need to be brought to court:

(a) decisions about the proposed withholding or withdrawal of artificial nutrition and hydration from a person in a permanent vegetative state or a minimally conscious state;

(b) cases involving organ or bone marrow donation by a person who lacks capacity to consent; and

(c) cases involving non-therapeutic sterilisation of a person who lacks capacity to consent.

What is the role of mediation in cases like these?

“Hospitals will always try to mediate first, and gain the understanding and agreement of the family.  Court cases are extremely stressful during a time when emotions are (understandably) already heightened.  They should be the last resort.

Will the views of independent experts (second opinions) have been sought?

“Independent experts are essential in these types of cases, and they are always instructed by the court.  However, it must be remembered that an independent expert has not nursed the patient for many months (like the patient’s medical and nursing team) and does not know him or her nearly as well as nurses and doctors on the ground.

“It is likely that in Tafida’s case the hospital agreed to allow the doctors at the Italian hospital to see her (and perhaps speak to some of her medical specialists) by videolink, but in the absence of a court decision, and as the hospital responsible for her care, it would have had no legal responsibility to agree to do so.  Unless there has been a pre-trial hearing (known as a directions hearing) appointing an Italian doctor as an independent expert or seeking a second opinion from them, it seems more likely that the Italian hospital’s involvement was at the request of the family who are naturally desperate for any possibility of hope.  In such circumstances, the Italian doctor or doctors who have “examined” Tafida by videolink will almost certainly only have seen a ‘snapshot’ of her clinical picture.  If they have not been formally invited by the court to examine her, it is also unlikely that they will have read all (or any) of Tafida’s medical notes.  As she has been in hospital for five months, there will be a large volume of medical and nursing notes to absorb before a proper and careful opinion on her treatment and recovery prospects could be reached by clinicians not currently involved in her care.  Due to her right to privacy under English law and Article 8 of the European Convention on Human Rights, it is highly unlikely that these medical notes will have been released to the Italian hospital by her clinical team at this stage.  The court has the power to order their disclosure to the Italian hospital, and may do so, but only if the treatment that the hospital claims it can offer would not be futile.”

Declared interests

Prof Dominic Wilkinson: “Dominic Wilkinson is the co-author with Julian Savulescu of ‘Ethics, Conflict and Medical Treatment for children’, published by Elsevier in 2018.

Prof Alastair Sutcliffe: “No conflict of interest.”

Dr Daniel Sokol: “No competing interests.”

None others received.