What does the public think should happen when parents and doctors disagree about life support for a child?

By Claudia Brick and Dominic Wilkinson.

The case of Tafida Raqeeb, currently being heard in the High Court, is the latest high profile legal battle between physicians and parents about life sustaining treatment for a seriously ill child. Since suffering a severe stroke in February, five-year old Tafida has been in intensive care at the Royal London hospital, dependent on mechanical ventilation and artificial nutrition and hydration. According to a statement made by the Barts Health NHS Trust, physicians believe that “further medical treatment would not improve her condition and would not be in her best interests”. Tafida’s parents disagree with this decision and have located doctors in Italy willing to treat their daughter. They have set up a crowdfunding page to try to raise £400,000 to cover treatment, travel and legal costs.

The vast majority of life and death decisions for seriously ill children are made in private, and through consensus between physicians and families. However, prominent cases of disagreement such as that of Tafida Raqeeb, Charlie Gard in 2017 and Alfie Evans in 2018 have brought challenging ethical questions to public attention. When is life worth living and when should treatment be withdrawn, if ever? How much say should parents have in making these decisions? When should scarce resources be considered, if at all?

Cases such as that of Charlie Gard have drawn substantial social media support and opinions from as far afield as the White House and the Vatican, and much has been written by ethicistshealth professionals and legal practitioners on the subject. However, it is not clear what the wider community thinks of these cases, or how they think such disputes should be resolved. Do they think that life support should be continued at all costs, or is it sometimes wrong to keep babies alive on machines? Do they think that parents should have the final say in decisions, or might they sometimes be overruled?

In a forthcoming paper in the Journal of Medical Ethics, we shed some light on the UK general public’s perspective through an online survey. We surveyed a sample of 130 people, and gave them simplified, standardised scenarios of severely ill hospitalised infants modelled on some of the controversial cases that have reached the courts. We asked their views on the benefit of life for the infants and whether treatment withdrawal would be justified, as well as their beliefs about parental rights and resource considerations. We compared these public views with existing legal frameworks for decision making.

In our study, participants seemed to reject the idea that life is always worth preserving. Almost all (94%) agreed that an infant’s life may be of no benefit when well-being falls below a critical level: one where the infant has no awareness of themselves or their surroundings, even if suffering is minimal.

Our survey participants clearly indicated that in many cases the answer is not black and white. Up to 50% of participants in each case believed it would be permissible to either continue or withdraw treatment. In the cases with the greatest uncertainty about the correct treatment choice, participants were most likely to believe it should be up to parents to decide whether treatment should continue or stop.

Those who we surveyed did not, in most cases, support withdrawing treatment against parental opposition. However, in the most extreme case (based on the case of Alfie Evans), where a child was completely and permanently unconscious and unaware of their surroundings, the majority of participants believed that life support should be stopped, and parental wishes overruled. Participant opinion on treatment withdrawal in cases based on Charlie Gard and the earlier infant Baby MB also closely aligned to the legal decisions that were made at the time. This suggests that these court decisions, although highly controversial at the time, may be in line with broader societal values.

Because of patient confidentiality, information about Tafida’s condition is not publicly available so it is difficult to know how her situation compares with the cases that were described in our survey. However, if she has very severe cognitive impairment, without hope of improvement or possibility of future ability to have basic relationships, our survey suggests that this would potentially be regarded by most of the public as below the level of a life worth living. In such severe cases where ongoing treatment might involve harm to the child, there is likely to be support for treatment withdrawal even in the face of parental opposition.

It seems likely that cases such as that of Charlie Gard and Tafida Raqeeb will increase with gains in medical technology, social media and public awareness of treatment options. Having comprehensive policies to inform these situations is necessary to reduce both unnecessary, costly medical treatment and legal battles. Although survey findings cannot provide definitive answers, they provide important insights into the views of the UK general public which may be valuable for debating how these decisions should be made.

Paper title: Worth living or worth dying? The views of the general public about allowing disabled children to die. Journal of Medical Ethics 2019 (forthcoming)

Author(s): Brick C,  Kahane G, Wilkinson DJC, Cavola C, Savulescu J.

Competing interests: None

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