Radio: In the child’s best interests on BBC Radio 4

4 December 2018

BBC Radio 4, Sunday 9 December 2018, 17.00 GMT or via BBC Sounds

This programme features KCL MA Medical Ethics and Law alumnae Victoria Butler-Cole and Sarah Barclay, co-founder (with alumnus Dr Simon Meller) and Director of the Medical Mediation Foundation.

How and when should the decision be made to end the life of a critically ill child?

The BBC’s Medical Correspondent Fergus Walsh reflects on the legal and ethical challenges raised by controversial and emotionally charged cases, like those of Charlie Gard and Alfie Evans.

Their impact reverberated around the world, prompting protests on the streets, an outpouring of emotion on social media and the vilification of hospital staff. Even the US President and the Vatican got involved. Though these cases were very different, in each the parents were locked in a bruising battle with the hospital for the right to make decisions about how and where to treat their children.

The current legal test focuses on what is in the child’s best interests and, in court, the hospital, the parents and the child all have separate legal representation.

But the potentially adversarial nature of the court system and the presence of ferocious debate on social media means these intensely difficult decisions can became even more emotionally charged.

The programme examines whether it’s possible to improve the current system, to prevent more cases reaching court and whether the legal process itself could be improved.

Job: Senior Research Associate in Healthcare Ethics at Bristol

18 June 2018
Job number


Bristol Medical School

Contract type

Open Ended

Working pattern

Full time


£36,613 per annum

Closing date for applications


We are seeking a Senior Research Associate to work on an exciting five-year collaborative project, which explores “best interests” decisions in healthcare, ethics and law, based in the Centre for Ethics in Medicine, in the Medical School at the University of Bristol.

The Senior Research Associate will primarily carry out research on the “Balancing Best Interests in Healthcare, Ethics and Law” (BABEL) project, which is funded by the Wellcome Trust. This is an empirical bioethics project, comprising normative and empirical work, and their combination. The post holder will primarily focus on best interests and healthcare ethics and will proceed through three phases (mapping, framing and shaping). In the mapping phase, undertaking literature reviews and analysis, focusing on literature in healthcare and healthcare ethics. In the framing phase, you will undertake empirical (qualitative) research with a range of participants, including individuals with fluctuating or absent mental capacity, carers, patient advocates and healthcare professionals.

In the shaping phase, findings from the previous phases (and from research elsewhere in the project) will be brought together to form recommendations for future practice. The post holder will produce reports, publications and presentations and will contribute to applications for further funding. You will also be expected to make contributions to teaching and assessment in Bristol Medical School, and particularly the Centre for Ethics in Medicine.

The successful candidate will have experience in bioethics and in qualitative social science research methods. Working as part of a multidisciplinary team, which includes Professor Richard Huxtable, Dr Jonathan Ives and Dr Giles Birchley, all from the Centre for Ethics in Medicine, and Dr Judy Laing and Dr Sheelagh McGuinness, from the Centre for Health, Law and Society.

For informal enquiries, please get in touch with Jonathan Ives (j.ives [at] or Richard Huxtable (r.huxtable [at]

Job: Health & Welfare/Court of Protection Solicitor, NHS Wales

7 July 2017

We are looking for a talented and committed solicitor to work predominantly within our Complex Patient Team which deals with disputes in some of the most complex and sensitive clinical scenarios.

The Team advises and represents the NHS in Wales in the Court of Protection which includes cases involving Serious Medical Treatment and Deprivation of Liberty. The Team also advises on Mental Health legislation and works closely with our Inquest team in cases involving death in detention.

This is a genuinely rare opportunity to join a team that works closely with its clients at the front line of clinical practice where legal and ethical problems are common.

You will be part of an experienced team that offers exciting opportunities not available elsewhere in Wales.

The ability to speak Welsh is desirable for this post

Closing date – 6th August 2017

For further details / informal visits contact:
Gavin Knox [KCL MA MEL alumnus]
02920 903713

Comment: The importance of language in the Ashya King case

3 September 2014

At the time Ashya King’s parents removed him from hospital in Southampton, they had ‘parental responsibility’ for him and were responsible for making decisions about his care, including where it would take place. Many journalists and lawyers (including myself) have made this clear in the last few days, rebutting the suggestion that doctors’ consent was required for Ashya’s removal. Yet the hospital’s most recent statement still refers to his parents’ failure to obtain ‘the consent of medical staff’ for his removal, and media reports today quote an oncologist at the hospital as stating that before proton beam radiotherapy could commence, ‘Ashya is first required to undergo two cycles of chemotherapy.’

This latter quote is second-hand hearsay, and even if correct could just be a casual use of the language of obligation, reflecting Ashya’s medical needs rather than a care plan to be imposed by the hospital. More generally though, we should all try to avoid language suggesting that medical professionals are the presumptive decision-makers for ill children, when this is simply not the case.

Decisions about a child’s medical treatment are taken by the child himself, in the case of a child with sufficient intelligence and maturity to make his own decisions, or the party with parental responsibility, most often the parents. Courts, however, have been reluctant to allow these decision-makers complete autonomy, and have retained an absolute power to override any decision involving the medical treatment of a child on the grounds of the child’s ‘best interests’. One way in which courts can exercise this power is through the wardship jurisdiction. In this case Ashya was made a ward of court on Friday (29 August 2014), which means that the court is now responsible for making all important decisions in Ashya’s life, including decisions about his medical treatment.

Before the legal steps taken in this case, what were the respective roles of the doctors and Ashya’s parents? If those with parental responsibility refuse a recommended treatment, in this case conventional radiotherapy, then the medical team must take steps to bring the issue before a court if the consequences of the refusal are thought serious enough to warrant such a step. Unless it is an emergency, to proceed without the consent of either those with parental responsibility or the court would be a battery. If in an emergency situation it is impossible or impracticable to seek parental consent, then treatment reasonably necessary to avoid serious harm or death may be given. However, if an emergency is foreseeable, there is an onus on the Hospital Trust to seek a judicial declaration before the situation becomes urgent. Glass v UK [2004] 1 FLR 1019, [70]-[83] (Eur Ct HR). (There may also be disciplinary consequences for a doctor who proceeds without parental consent. See Clare Dyer, 1998 ‘Consultant Suspended for Not Getting Consent for Cardiac Procedure’. BMJ 316: 955 (describing a case of a consultant who was suspended for serious professional misconduct by the General Medical Council for failing to obtain parental consent to a balloon catherisation on a six year old girl).)

So in any case in which there is serious disagreement between someone with parental responsibility and the medical team treating the child, the matter should be brought to court for an assessment of the child’s best interests, given the importance of such a decision:

There can be no doubt that the best course is for a parent of a child to agree on the course which the doctors are proposing to take, having fully consulted the parent and for the parent to fully understand what is involved. That is the course which should always be adopted in a case of this nature. If that is not possible and there is a conflict, and if the conflict is of a grave nature, the matter must then be brought before the court so the court can decide what is in the best interests of the child concerned. Faced with a particular problem, the courts will answer that problem. (R. v. Portsmouth Hospitals NHS Trust (ex parte Glass) [1999] EWCA Civ 1914).

Whether the Hospital Trust should have acted sooner to bring this case to court is not clear – we must await the outcome of their own inquiry and the wardship proceedings. As the Court of Appeal has indicated, discussion, negotiation and eventual consensus are to be preferred over court involvement. Mediation may also be useful. More may need to be done though to “facilitate rapid default access to courts” when the best interests of the child are in dispute.

When these cases do come to court, a balancing approach is used, looking at the child’s quality of life:

The judge must decide what is in the child’s best interests. In making that decision the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the patient (In re J [1991] Fam 33). There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable (In re J). The term “best interests” encompasses medical, emotional, and all other welfare issues (In re A [2000] 1 FLR 549). The court must conduct a balancing exercise in which all the relevant factors are weighed (In re J) and a helpful way of undertaking this exercise is to draw up a balance sheet (In re A). (Portsmouth Hospitals NHS Trust v Wyatt and another [2005] EWCA Civ 1181, [87].)

In another recent case involving a child being treated for a brain tumour, the judge conducted this type of balance sheet exercise when deciding which of two treatment plans was in seven year old Neon Roberts’ best interests: conventional chemotherapy and radiotherapy, or complementary therapies. Choosing the former, the judge explained:

To have any realistic prospect of becoming selected by the court … the proposed plan would have to have a prognosis as to probable survival rate not much less than (and preferably equal to) the sort of survival rate achievable through the use of the orthodox treatment universally applied at present by oncologists in this country. (An NHS Trust v SR [2012] EWHC 3842 (Fam), [25])

Ashya’s parents’ views that proton beam radiotherapy is in his best interests will be an important consideration for the court, especially as the Hospital Trust has indicated that survival rates are comparable between the two options being considered for Ashya:

During discussions, Ashya’s family indicated that they wished him to undergo proton radiotherapy instead of standard radiotherapy. This option was explored with the family and they were informed that in Ashya’s case there is likely to be no difference in survival between standard radiotherapy and proton radiotherapy and overall no proven significant benefit. Therefore, the Trust considers there is no benefit to Ashya of proton radiotherapy over standard radiotherapy. This view is supported by a national independent expert body.

If the Trust’s view is supported by the clinical evidence presented in court next week, this would clearly distinguish this case from that of Neon Roberts. Doubt has already been cast on whether the survival rates are indeed comparable, though, so the judge’s task — to determine Ashya’s best interests through detailed consideration of the potential benefits, harms and burdens of each option — will undoubtedly be complex and challenging.

Radio: drama about adolescent autonomy

17 July 2011

Positive by Tina Pepler, BBC Radio 4, Thursday 21st July 14.15-15.00, available after broadcast via the iPlayer

From the programme’s page:

In the second of two Afternoon Plays commissioned to accompany the current series of Inside the Ethics Committee, a pregnant teenager and her angry mother present the ante-natal team with a series of increasingly difficult decisions. When Annie is admitted to A&E with stomach pains, she’s shocked to find out that she’s pregnant. Her mother is even more horrified, and the ante-natal team must decide if Annie is capable of making her own decisions without her mother’s consent. The situation is further complicated when Annie wants to keep an even more shocking piece of news from her mother, and the medical team’s efforts to support her come under real pressure as an emergency confronts them with a difficult decision about what is best for Annie’s welfare.

Rosie: Nicola Miles-Wildin
Theresa: Lucy Black
Jacqui: Susie Ridell
Tess: Deirdre Mullins
Des: Jack Holden
Michael: Gerard Cooke
Paul: Chris Yapp
John: Mark Meadows
Mr Joseph: Russell Boulter
Sam/Lily: Nadia Williams

Directed by Sara Davies

Radio: drama about capacity and best interests

14 July 2011

Best Interests by Sasha Hails, BBC Radio 4, 14 July 2011, 14.15-15.00, available after broadcast via the iPlayer

From the programme’s page:

When a confused young man with no I.D. and a Dr. Who fixation is brought into hospital, the staff have clear rules about how decisions can be made on his behalf. But when he starts to make his own wishes clear, are they right to listen?

Benji … Gunnar Cauthery
Fay … Clare Perkins
Iain … Simon Bubb
James … Carl Prekopp

with Peter Polycarpou, Gerard McDermott, Jonathan Forbes, James Lailey, Alex Tregear, Susie Riddell and Elaine Claxton.

Script Consultant …. Jim Blair, St George’s Healthcare NHS Trust

Produced and directed by Jonquil Panting

Radio: decision-making for an unconscious pregnant woman

14 July 2011

BBC Radio 4, Inside the Ethics Committee, Thursday 14 July 21.00-21.45, available indefinitely on the iPlayer

From the programme’s page:

Anne is brought into Accident and Emergency unconscious, having suffered a cardiac arrest. She is thirty five years old and pregnant.

Within hours of Anne’s admission to intensive care, she has another cardiac arrest and starts to have seizures. On several occasions over the next few days, the medical team think they might lose her. But each time she survives.

As Anne’s life hangs in the balance, how much should her pregnancy influence the decisions the medical team need to make about Anne?


Dr Andrew Hartle, Consultant Anaesthetist at Imperial College Healthcare NHS Trust and a member of its Clinical Ethics Committee

Rosamund Scott, Professor of Medical Law and Ethics at the Centre of Medical Law and Ethics, Kings College London

Deborah Bowman, Senior Lecturer in Ethics and Law at St George’s University in London