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.
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 Doctors believe that the child’s prognosis is very poor and that treatment should be withdrawn.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
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  1 FLR 1019, - (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)  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  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  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  EWCA Civ 1181, .)
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  EWHC 3842 (Fam), )
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 illness27 January 2012
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.
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