Observations Ethics Man

Lessons from the Ashya King case

BMJ 2014; 349 doi: https://doi.org/10.1136/bmj.g5563 (Published 10 September 2014) Cite this as: BMJ 2014;349:g5563
  1. Aidan O’Brien, barrister, London,
  2. Daniel K Sokol, barrister and medical ethicist, London
  1. daniel.sokol{at}talk21.com

Clinicians must try to reduce the risk of misunderstandings

On 28 August 2014 the parents of 5 year old Ashya King took him from Southampton General Hospital and boarded a ferry to France. He had been recovering from the removal of a medulloblastoma, a high grade paediatric tumour.

Ashya’s parents and doctors disagreed over his treatment. The parents sought proton beam therapy, arguing that it was less harmful than conventional radiotherapy.1 Peter Wilson, the lead paediatrician at the hospital, has since commented, “For this particular tumour, the reason why the proton beam was not deemed to be of any benefit is because you have to irradiate most of the brain and spine anyway.”2 Proton beam therapy is not routinely provided on the NHS in England, although a small budget exists to take children abroad for treatment.

If a child lacks competence to make treatment decisions, the responsibility falls to the child’s parents. Yet, the parents’ right is not absolute. Where their instructions seem to conflict with the child’s best interests, the doctors must seek the court’s authority to override them, save for grave emergencies. A court can invoke its inherent jurisdiction under section 8 of the Children Act 1989 to make “specific issue orders” or “prohibited steps orders.” In doing so, a judge will decide what is in the child’s best interests.

In cases such as Ashya’s, where there is a disagreement about treatment options, the onus is on the hospital to refer the matter to the courts.3 (Ashya’s father has claimed that the hospital’s threat to apply for a court order prompted the family to remove Ashya.) That is the law. In practice, court orders can usually be averted by ongoing and open communication between the family and the medical team. We don’t know what the nature of the communication was in Ashya’s case; however, in general terms, the tendency to avoid difficult conversations must be resisted, and warning signs of a brewing disagreement—such as changes in the nature of a family’s questions or their body language—must be acted on quickly. Joseph Fins, the US bioethicist and professor of medicine, has written, “Too often, the culture of intensive care promotes and rewards diagnostic acumen and technical competence at the expense of communication. The result is that patients and family may feel bewildered and isolated at a time of crisis.”4

On discovering Ashya’s absence the hospital informed Hampshire Police. The hospital feared that, if Ashya’s nasogastric tube was displaced, feed could enter his lungs, with potentially fatal consequences. Without a gag reflex, he was at risk of choking. And the battery to his food pump was believed to be fast running out.

Ashya’s parents had “parental responsibility” when they removed him from hospital. It is therefore arguable that no permission from medical staff or the courts was needed. That the parents removed Ashya without telling anyone at the hospital, even if not legally obliged to do so, indicates the extent of the breakdown in trust between the family and the medical team.

Once alerted to the situation the Crown Prosecution Service confirmed, on the basis of information from the hospital, that Ashya’s life was at serious risk and that he needed urgent medical care. On 29 August Southampton Magistrates’ Court issued a European arrest warrant. The basis on which it was issued remains unclear, but Hampshire police have said that it was “based around neglect.”

Section 1 of the Children and Young Persons Act 1933 makes it an offence for an adult with parental responsibility to wilfully neglect the child in a manner that is likely to cause injury. This offence includes the failure to provide adequate medical aid. It was probably under this broadly defined offence that the police acted.

As a matter of law, criminal proceedings must be ongoing for a European arrest warrant to be issued. There must also be a realistic prospect of conviction. The first requirement does not seem to have been satisfied in this case. It is unclear whether the second was.

On 29 August Portsmouth Social Services successfully applied to the High Court to make Ashya a ward of court.5 The court now had control over all matters relating to Ashya’s welfare and demanded that he be presented to the nearest hospital at once. The next day Ashya and his parents were found in Spain. Ashya appeared to have suffered no ill effects from his travels. His parents were transferred to prison pending extradition proceedings. This triggered a public backlash against the hospital and police.

On 2 September the Crown Prosecution Service arranged for the discharge of the European arrest warrant on the basis of insufficient evidence for a realistic prospect of a criminal conviction. On 5 September the High Court allowed Ashya to undergo proton beam treatment in a clinic in Prague. Despite this, the question remains as to whether the statutory authorities acted in a heavyhanded manner.

In a rapidly evolving situation the hospital and police were required to act quickly, without any clear knowledge of the intentions of Ashya’s parents. The attempts to contact Ashya’s parents after his disappearance were fruitless.

The law can be a blunt instrument, but without knowing what the authorities knew at the time of making their decision we must be slow to criticise their actions with the benefit of hindsight. Although the temporary separation of Ashya and his parents was regrettable, less robust and proactive measures by the authorities may have led to a more tragic outcome.

In terms of clinical ethics, the case highlights the interdependence of patient and family and the vital importance of clinicians and families working together towards the shared goal of doing what is best for the child. Although not infallible, mutually acceptable plans can—with time, negotiation, cultural and religious sensitivity, and a relationship of trust—almost always be found. The trick is to get the family on board early and to maintain regular contact, with opportunities for questions, so that the risk of misunderstandings, unrealistic expectations, and later opposition is reduced. Perhaps such “preventive ethics” might have avoided the total loss of trust in Ashya’s case.

Notes

Cite this as: BMJ 2014;349:g5563

Footnotes

  • Competing interests: None declared.

  • Provenance and peer review: Commissioned; not peer reviewed.

  • thebmj.com Patient Partnership: When doctors and patients disagree (BMJ 2014;349:g5567, doi:10.1136/bmj.g5567)

References

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