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.

Lecture: Richard Huxtable on ‘A Balance of Opposites? Ethics, Judges and Minimally Conscious Patients’

18 July 2017

2017 Institute of Medical Ethics Public Lecture

Tuesday September 26th, 2017, 17.00 for 17.45, followed by a drinks reception at 19.15.

Wellcome Collection, 183 Euston Rd, London, NW1 2BE

Richard Huxtable, Professor of Medical Ethics & Law, and Deputy Director of the Centre for Ethics in Medicine at the University of Bristol, will give a talk titled “‘A Balance of Opposites? Ethics, Judges and Minimally Conscious Patients’

This event is free but you must register.


Conference: ‘A Right to Die?’ – Socio-legal perspectives at Keele University

6 March 2017

18th July 2017

School of Law, Keele University

Register here


10.00 Registration & Coffee

10.30 Welcome from Professor Alison Brammer, Head of Keele Law School

10:35 Introduction by Chair, Dr Sue Westwood

10.40 Keynote speaker: Professor Penney Lewis, Dickson Poon School of Law, King’s College London (‘Assisted Dying and Legal Change’)

11.10 Q&A

11.20 – 12.30 Panel 1: Assisted Dying & Euthanasia – Current Debates. Chair: Dr Anthony Wrigley

Speaker (1) Dr Iain Brassington, University of Manchester (‘Overview of Debates’)

Speaker (2) Professor Richard Huxtable, University of Bristol (‘Euthanasia, Ethics and the Law’)

Speaker (3) Professor Alison Brammer, Keele University (‘Safeguarding Issues’)

12.20 Q&A

12.30 – 1.15 Lunch

1.15 – 2.40 Panel 2: Assisted Dying & Euthanasia – Views. Chair: Professor Marie-Andre Jacob

Speaker (1) Professor Clare Wilkinson, Bangor University (‘Why do we want the right to die?)

Speaker (2) Dr Glenys Caswell, University of Nottingham (‘Agency, death and dying in the UK’)

Speaker (3) Davina Hehir, Director of Legal Strategy and Policy, Dignity in Dying (‘Choice, control and access to services at the end of life: Advocating for the right to die’)

2.30 Q&A

2.40 – 3.00 Tea Break

3.00 – 4.10 Panel 3: Assisted Dying & Euthanasia – Subjectivities Chair: Dr Tsachi Keren-Perez

Speaker (1) Professor Celia Kitzinger, University of York (‘Court applications for withdrawal of artificial nutrition and hydration from patients in a permanent vegetative state: Family experiences’)

Speaker (2) Dr Sue Westwood, Keele University (‘Older lesbians, gay men and the “right to die” debate’)

Speaker (3) Professor Sue Read & Dr Sotirios Santatzoglou, Keele University (‘Exploring hospice care from the perspectives of people living with multiple sclerosis: An exploratory case study’)

4.00 Q&A

4.10 – 4.15 Closing comments (Chair)

4.15 Close

Radio: withdrawal of treatment from patients in vegetative states

19 June 2011

BBC Radio 4, Tue 21 Jun 2011, 20:00-20:40, repeated on Sun 26 Jun 2011, 17:00-17:40, available after broadcast via the iPlayer

From the programme website: “A review into the care of patients in vegetative or low awareness states has been launched by the Royal College of Physicians. There are thought to be as many as 5000 such people in the UK. The working party will look at concerns that assessment and diagnosis of patients is not consistent across the country and will ask whether the cost of long term care is affordable to the NHS. Ann Alexander examines calls for a reform of the process to end the life of such patients where their families believe their loved one would no longer wish to be alive. The programme reveals how some hospitals appear unaware of the law and hears how the process can be lengthy and costly, putting families under further strain.”

TV: right to die in Law and Order: UK

6 March 2011

ITV1, Monday 14 March 2011, 9-10pm, available after broadcast via the ITVPlayer

The Radio Times is reporting that episode 2 of the new series of Law and Order: UK will feature a ‘right to die’ issue:

“High-court judge Rachel Callaghan (guest star Juliet Stevenson) is critically injured after being shot in the underground car park of her apartment. When it becomes clear a hitman was responsible, the team tries to discover who hired him. As evidence mounts against the accused, the judge’s health deteriorates, and Castle is faced with a choice between friendship and respect for a person’s right to die. Bill Paterson, Bradley Walsh and Freema Agyeman star.”

TV: Between life and death

19 July 2010

Available on iPlayer until 26th July 2010

“Provocative documentary following the doctors who can now interrupt, and even reverse, the process of death. Filmed over six months in the country’s leading brain injury unit (Addenbooke’s Hospital, Cambridge), it follows the journey of a man who, by only moving his eyes, is eventually asked if he wants to live or die. Two other families are also plunged into the most ethically difficult decision in modern medicine.”

There is more on the programme at its site, including a blogpost by the head of the brain injury unit.

Comment: parental disagreement on withdrawal of life-sustaining treatment from an incompetent child

4 November 2009

As I wrote earlier, the Baby RB case is not quite as unique as contended by the Guardian and other media outlets. Channel 4 News claims that:

This is the first time the courts have had to decide on the life of a child with no evidence of brain damage.

This is clearly wrong, in light of the two SMA cases I discussed earlier.

However, the Baby RB case is perhaps unique in a different way. While the courts have dealt with parental disagreement over medical treatment for a child, I believe this is the first such case involving life-sustaining treatment. Generally, the consent of one parent (more accurately, one person with parental responsibility) to a particular treatment (or withdrawal of treatment) is sufficient to make that action lawful. (Children Act 1989, s.2(7)).

In Re J (child’s religious upbringing and circumcision) [1999] EWCA Civ 3022, [32] the Court of Appeal held that:

The decision to circumcise a child on ground other than medical necessity is a very important one; the operation is irreversible, and should only be carried out where the parents together approve of it or, in the absence of parental agreement, where a court decides that the operation is in the best interests of the child.

Butler-Sloss P. went on to describe

a small group of important decisions made on behalf of a child which, in the absence of agreement of those with parental responsibility, ought not to be carried out or arranged by a one-parent carer although she has parental responsibility under section 2(7) of the Children Act 1989. Such a decision ought not to be made without the specific approval of the court. Sterilisation is one example. The change of a child’s surname is another. Some of the examples, including the change of a child’s surname, are based upon statute (see section 13(1) of the Children Act).

Immunisation was added to this “small group of important decisions” in Re C (Welfare of Child: Immunisation) [2003] EWCA Civ 1148. The Departmental of Health has also suggested that

It is possible that major experimental treatment, where clinical opinion is divided, might also come into this category, although such a case has not yet come to court. (Seeking consent: working with children (2001), p.19)

Jonathan Montgomery proposes that organ transplantation, termination of pregnancy and cosmetic surgery should also come within this category (Health Care Law, 2nd edition, p.298).

What about the withdrawal of life-sustaining treatment from an incompetent child? I would argue that in any such 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).

This would seem to apply whether, as in most cases which come to court, both parents disagree with the medical recommendation, or whether, as in the Baby RB case, one parent agrees and the other disagrees. In other words, decisions about the withdrawal of life-sustaining treatment for an incompetent child do fall into the special category of important decisions for which parental agreement is needed.

News and Comment: High Court to decide on withdrawal of treatment from baby

2 November 2009

The High Court has been asked to decide on the best interests of RB, a one-year old child with congenital myasthenic syndrome (CMS). RB’s mother is supporting the NHS Trust’s application to withdraw life-sustaining treatment from RB, while his father opposes the application.

In such cases, a balancing approach is used by the court, 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 [Athens login required]). 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 [Athens login required]). 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 earlier cases, the test adopted was that treatment should be provided unless the child’s life post-treatment would be “intolerable” (Re B (A Minor) (Wardship: Medical Treatment) [1981] 1 WLR 1421, 1424 (Dunn LJ, CA) [Athens login required]; Re J [1991] Fam 33, 55 (Taylor LJ)) [Athens login required]. The test of intolerability has since been abandoned, in favour of the balancing approach described above (Burke [2005] EWCA Civ 1003, [62]-[63]; Portsmouth Hospitals NHS Trust v Wyatt and another [2005] EWCA Civ 1181, [76].)

On the RB case, the Guardian is reporting that:

If the hospital succeeds in its application, it will be the first time a British court has gone against the wishes of a parent and ruled that life support can be discontinued or withdrawn from a child who does not have brain damage.

This assertion relies on a very fine distinction (between withdrawal, and withholding following withdrawal) made by Holman J. in An NHS Trust v B and others [2006] EWHC 507, [101]-[102]. In that case, Holman J. ruled in favour of continuing ventilation (against the recommendation of the NHS Trust) of MB, aged 18 months, who was suffering from type 1 spinal muscular atrophy (SMA):

M has age appropriate cognition, and does continue to have a relationship of value to him with his family, and does continue to gain other pleasures from touch, sight and sound. . . .  It is impossible to put a mathematical or any other value on the benefits. But they are precious and real and they are the benefits, and only benefits, that M was destined to gain from his life. I do not consider that from one day to the next all the routine discomfort, distress and pain that the doctors describe (but not the ones I have now excluded) outweigh those benefits so that I can say that it is in his best interests that those benefits, and life itself, should immediately end. On the contrary, I positively consider that as his life does still have benefits, and is his life, it should be enabled to continue, subject to excluding the treatment I have identified.

In that case (at [11]), Holman J. asserted the uniqueness of the case before him:

There have been legal cases and decisions in which approval has been given for the withdrawal of life support from, followed by immediate death of, brain dead or severely brain damaged children or patients. And there have been legal cases and decisions (of which the case of Charlotte Wyatt is an example) in which advance approval has been given not to embark upon (i.e. to withhold) forms of treatment or life support, if later needed, if the condition of a child is very poor. So far as I am aware, no court has yet been asked to approve that, against the will of the child’s parents, life support may be withdrawn or discontinued, with the predictable, inevitable and immediate death of a conscious child with sensory awareness and assumed normal cognition and no reliable evidence of any significant brain damage.

Holman J. then went on to distinguish another case involving type 1 SMA, Re C (a minor) (medical treatment) [1998] 1 FLR 384 (Athens login required), in which Sir Stephen Brown (the then President of the Family Division) held that it was in the 16 month old child’s best interests “that she be taken off ventilation and that it should not be reintroduced if she should suffer a further respiratory arrest.” Holman J. explained the distinction between the two SMA cases as follows (at [13]):

She [C], like M, was conscious. Further, she was able to recognise her parents and to smile. However, unlike M, she was only on intermittent positive pressure ventilation. The doctors considered, and the parents agreed, that she should be weaned off that ventilation before she became fully dependant upon it. The issue was whether, if or when she suffered a respiratory arrest, positive pressure ventilation should be restarted. The parents sought an order that it should be, but Sir Stephen Brown P declined to grant one, in part because of the well established principle that a court will not order a doctor to undertake a course of treatment which the doctor is unwilling to do; but also because Sir Stephen expressly held that it was in the best interests of the child not later to reimpose ventilation if needed. Since the doctors considered that a respiratory arrest would be inevitable the case is very close to the present one. But it did not involve or contemplate the immediate death of the conscious child; and the actual withdrawal of intermittent ventilation was agreed to, and supported, by the parents.

I’m not entirely convinced by this distinction. Is it substantial enough to bear the weight placed upon it by the Guardian? Certainly the case of RB is not as unique as the Guardian suggests.

It is always difficult to assess the best interests of a baby when deciding whether treatment should be continued or withdrawn. The factors which were important for Holman J. in MB were the existence of an interactive relationship with the parents, and the capacity to experience pleasure. Based on the media reports of the RB case, these factors appear likely to play a significant role in the High Court’s decision.

GMC Consultation: new End of Life guidance

29 March 2009

The General Medical Council has launched a consultation on new draft guidance, End of life treatment and care: Good practice in decision-making. The consultation runs until 13 July 2009, and is open to anyone with an interest in the issues covered by the guidance.