Posted on August 1, 2019 at 4:58 PM
by Professor Dominic Wilkinson, consultant neonatologist, Professor of Medical Ethics, University of Oxford.
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?
As in Tafida’s case, 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. Then, of course, it should be provided. However, sometimes further treatment or experimental treatments offer only false hope.
Why don’t parents have the 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.
Dominic Wilkinson is the co-author with Julian Savulescu of ‘Ethics, Conflict and Medical Treatment for children’, published by Elsevier in 2018
The outline of the book is copied below
What should happen when doctors and parents disagree about what would be best for a child? When should courts become involved? Should life support be stopped against parents’ wishes? The case of Charlie Gard, reached global attention in 2017. It led to widespread debate about the ethics of disagreements between doctors and parents, about the place of the law in such disputes, and about the variation in approach between different parts of the world. In this book, medical ethicists Dominic Wilkinson and Julian Savulescu critically examine the ethical questions at the heart of disputes about medical treatment for children. They use the Gard case as a springboard to a wider discussion about the rights of parents, the harms of treatment, and the vital issue of limited resources. They discuss other prominent UK and international cases of disagreement and conflict. From opposite sides of the debate Wilkinson and Savulescu provocatively outline the strongest arguments in favour of and against treatment. They analyse some of the distinctive and challenging features of treatment disputes in the 21st century and argue that disagreement about controversial ethical questions is both inevitable and desirable. They outline a series of lessons from the Gard case and propose a radical new “dissensus” framework for future cases of disagreement.
Full-text of the book is available (open access) here