'Doctors’ orders?'

Health iStock 000005083391XSmall 146x219Ben Troke considers the lessons to be learned from the Ashya King case, and analyses two other key judgments on disputed medical treatment decisions.

It is an extreme example of a medical treatment dispute when a 5 year old with a brain tumour is left alone in a Spanish hospital, while the family are in handcuffs and imprisoned after a European manhunt. But the Ashya King case is just one of three hugely important recent cases on medical treatment.

It is not appropriate to say too much about the Ashya King case when all we know comes from media coverage, and it is surely likely that further proceedings may yet pick the bones out of this situation. But on any view, things went very badly wrong here.

The language used is often telling, and it might ring alarm bells from the outset that the parents were described as having taken their son away from the hospital 'without doctors’ consent'. More often we talk about people discharging themselves against 'medical advice', which more properly reflects the fact that treatment is offered, not imposed (save in exceptions such as under the Mental Health Act) and, as local authorities are often reminded when judges perceive the interventions of social services to have been a little heavy handed, the state is 'a servant and not a master'.

Treatment without consent is unlawful. Where treatment is offered, a capable adult can consent or refuse, or choose among available options. For an adult without capacity, a decision must be made in their best interests. For a child too young to make the decision for themselves, consent can be given by someone with parental responsibility, or by the Court. Where clinicians think that the parents’ decisions are not in the child’s best interests, there is no authority to impose treatment regardless without a Court Order, and where it is apparent that a dispute is likely, an application to Court should be made as soon as possible.

There is another layer to this case: Having initially been presented as a family refusing medical advice on treatment, with the media emphasis on the parents being Jehovah’s Witnesses, it later became clear that in fact the family sought a different kind of medical treatment, not being offered in the UK, raising issues of access and funding.

Disputes about a patient’s best interests are often distorted by arguments over whether other options should be on the table. At the time of writing, a Judge has now ordered that he should be allowed to go to Prague for the specialist therapy which was not apparently being offered to him in the NHS. At least so the papers report, without apparent regard to any rights of the family to privacy or the medical confidentiality of the child. It remains to be seen whether that treatment is more appropriate and effective and, more widely, what impact this high profile case will have on the difficult negotiations between clinicians and families.

Disputes are inevitable in such fraught and emotional circumstances. In this case, it appears that a further problem was caused by the family having ideas about an alternative treatment based on their own internet research. One doctor writing in the press referred to this, perhaps a little dismissively, with a quote that “information without perspective is just a higher form of ignorance”. Others might feel that a viewpoint of 'doctor knows best' is increasingly at odds with the current policy of 'no decision about me without me'.

Certainly, our experience is that the best way to avoid them as much as possible is through managing expectations and open communication between the professionals and the family, trying to bridge the imbalance in power and information.

Going to Court

Similar issues came up in an important, but rather less publicised, case reported on 28 August 2014 (An NHS Trust v FG). FG was a 24 year old woman with schizoaffective disorder, in the late stages of pregnancy and currently detained under the Mental Health Act. The mental health trust and the acute hospital trust responsible for her obstetric care sought orders permitting a delivery plan, to be imposed against her wishes if need be, to secure the safe delivery of the baby (which would then be taken into local authority care), on the basis that FG lacked capacity to make the relevant decisions for herself.

The case is important for several reasons. The Court considered the (rare) circumstances in which such a plan should be imposed without the patient’s knowledge, and reporting restrictions accordingly.

The Court also set out tremendously useful guidance as to the approach to be taken to applications to intervene in childbirth for a woman with mental health problems, which is too detailed to set out in full, and is available here. Certainly, many more cases will have to go to Court, and the Judge was very critical of the delay in bringing the case.

Crucially, the Court also made it clear that as midwifery / obstetric staff will exercise continuous supervision and control of FG and she will not be free to leave the ward, she would be deprived of her liberty, and so this would need further specific scrutiny and authorisation. This is the first clear application of the 'acid test' from the Cheshire West case to an acute medical treatment situation, and shows that deprivation of liberty in the acute medical setting will now have to be taken very seriously and carefully indeed, with many more referrals to the Deprivation of Liberty Safeguards, or applications to Court, than we have seen to date. 

Getting it right – Out of Hours

In FG, the Judge was loud and clear:

“urgent applications to the out of hours judge must be limited to those rare and few cases where a genuine medical emergency has arisen and an immediate court order is necessary. I do not consider a failure to plan appropriately and/or a failure to identify a case where an application to court may be required constitutes a genuine medical emergency”.

The same point had been made, with even more impact, just a couple of weeks earlier in Sandwell and West Birmingham Hospitals NHS Trust v AB (8 August 2014).

AB is a 20 year old female with cerebral palsy and epilepsy. She was admitted to the Trust’s Intensive Care Unit with pneumonia on 12 June 2014. The clinicians thought that it would not be in her best interests to receive certain active treatment in the event of her condition deteriorating. The parents would not agree.

The Trust considered an application to Court and took advice, but no application was issued until 8 days later, after 5pm on Friday evening, 20 June 2014.

The Judge, Mrs Justice Theis, recognised how difficult these situations can be for clinicians and family alike, but was nonetheless very critical of the way in which the application was handled:

  • the last-minute, out of hours application effectively prevented the family from getting access to legal advice and representation in time for the hearing, and meant that there was no 'equality of arms' with the Trust;
  • appropriate, sensitive arrangements should have been made for the family to attend the telephone hearing themselves at least, but they only had access to a public phone in a public area of the hospital;
  • the Official Solicitor was not involved in time to get a direction from the Court so that he could be invited to represent AB;
  • the clinician’s statement gave insufficient information about the history or AB’s quality of life, which is essential material for the Court; and
  • there was no word version of a draft order made available for the Court at the hearing, significantly delaying the amendment and making of the final Order.

She concluded “…those considering making such applications should err on the side of making applications earlier rather than later. By doing so the necessary safeguards will be put in place in advance…rather than risk what happened here, where those important safeguards where put in place as the hearing unfolded”.

Conclusion

Not every case will capture global media attention, of course. But Trusts should bear in mind that, following revised guidance earlier this year on increasing transparency of proceedings in the Court of Protection and Family Division, cases are now more often published, and the organisations involved will not be anonymised unless it is necessary to protect the identity of the patient. Any criticism made of public bodies will probably be made publically.

The message from these three cases is clear. It is rare that a dispute over medical treatment comes entirely out of the blue. Good communication with the patients and families involved is not only the best way of avoiding such disputes, but is also key to making sure that those cases which need to go to Court are identified early and brought to Court promptly. We appreciate, of course, the costs and staff time involved in such cases, but leaving it too late can be very costly indeed.

Ben Troke is a lawyer at Browne Jacobson. He can be contacted on 0115 976 6263 or by email.