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

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.

Conference: British Transplantation Society Ethics Symposium and Living Donor Forum

Winter Ethics Symposium

23 November 2017

Paediatric Organ Donation and Transplantation in the UK

Mary Ward House, London WC1H 9SN

This year our focus is Paediatric Organ Donation and Transplantation in the UK
We have incorporated complex clinical cases, professional expertise, personal experience and public policy into an ambitious programme to address a range of challenging ethical issues.
Representatives from NHSBT and BTS will highlight obstacles to implementing paediatric donation and organ allocation prioritisation in the UK.
Clinicians working in neonatal and paediatric intensive care units and those involved in the care and possible transplantation of children will set out how a range of potential paediatric donors and transplant recipients are identified and managed and provide insight into factors affecting the development of strategies to expand the paediatric donor pool.
Paediatric donor and recipient families will share their personal stories, and ways to identify and address the psychological impact of bereavement in paediatric donation will be discussed.
Management of the adolescent living donor and strategies to optimise adherence and transition among adolescent recipients will be addressed.
Living Donor Forum

24 November 2017

Living Donor Risk

Mary Ward House, London WC1H 9SN

This year our theme is Living Donor risk, and in particular where the clinician perspective may be at odds with that of the prospective donor. Is this Caring Concern or Pompous Paternalism? How difficult is it for Living Donors to donate?
The day will take the form of an interactive discussion and debate between physicians and surgeons, coordinators, patients and carers. Come with an open mind or prepare to have your assumptions challenged!

Student rates are available.

Conference: 8th Association for Paediatric Palliative Medicine Study Day

8th Association for Paediatric Palliative Medicine Study Day
24 November 2017 | 30 Euston Sq, London
6 CPD points; book your place

Draft Programme

08.45 Registration & Exhibitors
09.00 APPM Chair’s welcome
Dr Pat Carragher, Medical Director, CHAS (Children’s Hospice Association
Scotland)

Session 1
Chaired by Dr Jon Dorling, Clinical Associate Professor in Neonatology School of
Medicine, University of Nottingham

09:05 Neonatal palliative symptom control
Dr Jon Dorling, Clinical Associate Professor in Neonatology School of Medicine,
University of Nottingham
Dr Edile Murdoch, Consultant Neonatologist (PPM special interest)
Simpson Centre for Reproductive Health
Royal Infirmary of Edinburgh

09.50 Case Studies: Panel discussion
Jon Dorling, Edile Murdoch, Dominic Wilkinson

10.40 Ethical challenges in perinatal palliative care
Professor Dominic Wilkinson, Consultant Neonatologist, Professor of Medical
Ethics, University of Oxford

11.35 Focus groups – delegates are free to attend any group

Hospice doctors/GPs
Dr Mike Miller, Retired Medical Director, Trustee Naomi House,
Medical Advisor, React

Hospital doctors/Trainees
Dr Renee McCulloch, Consultant Paediatric Palliative Medicine
Great Ormond Street Hospital, London

Specialist nurses and allied health professionals
Co-ordinated by Ms Julie Bayliss, Nurse Consultant, Great Ormond Street
Hospital, London

13.20 1st Seminar

1A Symptom management – dyspnoea
Dr Fin Craig, Consultant in Paediatric Palliative Medicine, The Louis Dundas
Centre, Great Ormond Street Hospital London.

1B Perinatal palliative care
Dr Edile Murdoch, Consultant Neonatologist (PPM special interest)
Simpson Centre for Reproductive Health
Royal Infirmary of Edinburgh

1C NICE guidance for end of life care in infants, children and young people
(NG61): development, content, implementation and quality standards
Dr Emily Harrop, Consultant in Paediatric Palliative Medicine, Helen and Douglas
House, Oxford, Deputy Chair of Guidance Development Committee

14.15
2nd Workshop
2A Symptom management – dyspnoea
Dr Fin Craig, Consultant in Paediatric Palliative Medicine, The Louis Dundas
Centre, Great Ormond Street Hospital London.

2B Perinatal palliative care
Dr Edile Murdoch, Consultant Neonatologist (PPM special interest)
Simpson Centre for Reproductive Health
Royal Infirmary of Edinburgh

2C NICE guidance for end of life care in infants, children and young people
(NG61): development, content, implementation and quality standards
Dr Emily Harrop, Consultant in Paediatric Palliative Medicine, Helen and Douglas
House, Oxford, Deputy Chair of Guidance Development Committee

Session 2
Chaired by Dr Anna-Karenia Anderson, Consultant in Paediatric Palliative
Medicine, Royal Marsden Hospital and Shooting Star Chase Hospice.

15.20 A new public health approach to EOL care:
Dr Libby Sallnow, St6 Palliative Medicine Registrar, North London Hospital,
Doctoral Student, University of Edinburgh

16.00 Paediatric palliative care in court
Victoria Butler-Cole, Barrister at 39 Essex Chambers, Chair of Trustees of
Compassion in Dying, Advisor to the Medical Mediation Foundation

16.45 Closing remarks
Dr Pat Carragher, APPM Chair, Medical Director, CHAS (Children’s Hospice
Association Scotland)

1700 End

Seminar: religion, pluralism and medical ethics in paediatric intensive care

May 8 2017, Jesus College Oxford 2pm-5pm, including refreshments

A child is critically ill in the intensive care unit. Doctors believe that the child’s prognosis is very poor and that treatment should be withdrawn. However, her parents do not agree. They say that it is contrary to their religion to stop treatment.

How often is religion a source of disagreement about treatment in intensive care? What are the views of major religions about withdrawing treatment in intensive care? 

Should religious requests for treatment be treated differently from secular requests? Should religious preferences for treatment count in a child? Should religious views be accommodated when providing scarce and expensive medical resources?

Guest Speaker: Prof John Paris S.J., Professor of Bioethics, Boston College

Speakers/ Panel Participants:

John Paris, Joe Brierley, Sarah Barclay, David Jones, John Wyatt, Siddiq Diwan, Dominic Wilkinson

This seminar is aimed at health professionals, ethicists, philosophers, theologians and chaplains. There are strictly limited places.

Early bird registration £15/10* if register by 28th February. £25/20* subsequently.

*Discounted registration for students.

To reserve a place at the seminar, please email rachel.gaminiratne [at] philosophy.ox.ac.uk

Questions about the seminar should be directed to Professor Dominic Wilkinson, dominic.wilkinson [at] philosophy.ox.ac.uk

Comment: The importance of language in the Ashya King case

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.

Doctoral positions: Global effects of resource allocation, legal and cultural factors on end of life decision making in paediatric critical illness

Dr David Inwald, Senior Lecturer in Paediatric Intensive Care at Imperial College (and KCL MA Medical Ethics and Law alumnus), is looking for potential PhD students to investigate “Global effects of resource allocation, legal and cultural factors on end of life decision making in paediatric critical illness”. If interested please contact Dr Inwald at d.inwald [at] imperial.ac.uk.

Radio: drama about adolescent autonomy

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.

Cast:
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

Job: Research Fellow – Medical Practitioners, Adolescents and Informed Consent

University of Leeds

Faculty of Education, Social Sciences and Law, School of Law

Full-time, fixed term 1 January 2011 until 30 June 2012

Closing date 12:00 noon 6 December 2010

A research project funded by the Nuffield Foundation, Children and Families Programme

You will be a skilled and experienced researcher, and play a key role in a project examining the law on adolescent consent and refusals to medical treatment. Consulting with experts from a range of disciplines, you will highlight areas of legal ambiguity and uncertainty, make comparisons with European and international models, and suggest ways forward. Current problems and possible solutions will be debated in a series of four workshops designed to engage experts and stakeholders from legal, medical, philosophical, and social science backgrounds.

You will take responsibility for the day to day management of the project, including desk based literature searches, visiting and interviewing experts in the field, organising, administering and contributing to the workshops, and analysing the results, writing reports and writing academic papers. You will play a central role in the analysis of current law, the workshop discussions and alternative models. You will be able to organise the workshops, take minutes, keep records and accounts, and produce reports and academic papers. You will give and participate in academic presentations.

You should have a doctorate in a legal, social science or philosophy discipline,  an excellent track record of post doctoral medico-legal, socio-medical or bioethical research, and an interest in human rights law.

University Grade 7 (£29,853 – £35,646 p.a. It is likely that the appointment will be made at or below £31,671 p.a. since there are funding limitations which dictate the level at which the appointment can start).

Informal enquiries to Dr. Emma Cave (Principal Investigator of the Medical Practitioners, Adolescents and Informed Consent project), email laweggc@leeds.ac.uk, tel +44(0)113 343 5044.

Application form and job details are available here.   Alternatively these may be obtained from Anne Prendergast, email a.prendergast@leeds.ac.uk, tel +44 (0)113 343 7393.

Radio: Inside the Ethics Committee

Series 6 now available on iPlayer

1/4. Should a man who believes his life-saving surgery is a conspiracy to kill him be forced?

2/4. When should a seriously ill child have a say in their treatment?

3/4. Should the NHS pick up the pieces when private treatment has unexpected consequences?

4/4. A woman with a living will attempts suicide. Should she be admitted to intensive care?”

TV: ‘Pushing the Boundaries’ at Great Ormond Street

BBC Two, Tuesday 6 April 2010, 9-10pm, and available after broadcast via the iPlayer.

From the programme’s website: “Filmed over the course of a year, Great Ormond Street features unprecedented access to doctors from one of the top children’s hospitals in the world as they make some of the hardest choices in medicine. When medical technology seems to offer so much, every parent with a sick child will hope that something can be done – but doctors must decide when enough is enough. For the first time on television, cameras follow Great Ormond Street Hospital’s doctors into the meetings where they come face-to-face with the most difficult ethical dilemmas on a daily basis.

Pushing the Boundaries focuses on the work of the largest children’s cardiac unit in the UK. Two of its surgeons – Martin Elliott and Victor Tsang – perform extremely advanced surgery that isn’t carried out anywhere else in the country, and the team’s success rate for heart transplant is well above the international average. Consultant cardiologist Phil Rees is the team’s longest serving doctor, and admits that he still finds it difficult not to become too emotionally involved in individual cases.

The film documents the stories of four children as the team attempt to save their lives: the parents of 8-month-old Aicha, given only a few months to live, refuse to accept the team’s decision that there’s nothing else to be done, forcing the doctors to reconsider their decision; 8-month-old Natalie’s parents are offered surgery that might save their daughter’s life, but the procedure is very complex and has never been tried before; 9-year-old Bryan has already had several life-saving heart operations but now a high-risk heart transplant is all that’s left to him; and Blessing’s parents must decide whether to agree to a perilous operation on their daughter when she is only two days old.

Through these stories the film explores when it’s right to treat a child. As surgeon Martin Elliott says: ‘Just because we can, doesn’t mean we should.'”