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Logo of archdischArchives of Disease in ChildhoodVisit this articleSubmit a manuscriptReceive email alertsContact usBMJ
Arch Dis Child. 2007 April; 92(Suppl1): A34–A36.
PMCID: PMC2066112


Ethics and law

G/TUES/LAW1 Ethical decision‐making in paediatric intensive care: whose “best interests” are we serving?

L. Jackman, J. Brierley, V. Larcher. Great Ormond Street Hospital, London, UK

BackgroundIn making healthcare decisions for children deemed incompetent to make informed choices, parental views carry substantial weight. Despite the desirability of achieving consensus between parents and professionals over what constitutes a child's best interests, disputes, which may be intransigent, can occur. This is a particular concern in the paediatric intensive care unit (PICU) setting where such decisions may have immense personal significance as well as societal and resource implications. In this context teams have a duty to consider carefully optimal strategies for resolving conflicts between parental opinion and the requirement to balance the burdens and benefits of patient care.

ObjectivesTo explore the practical application of ethical principles in conflict resolution and in particular the framework in which they are applied.

CasesCase 1: A 3‐year‐old admitted to PICU following an episode of near drowning resulting in prolonged cardiac arrest, multi‐organ failure, hypoxic brain injury and severe neurological impairment. In this case court involvement was sought by the clinical team to request permission for withdrawal of intensive care support in contrast to the family's wishes, following a second admission to PICU in the context of a pre‐existing DNAR order and failure of other forms of mediation. Case 2: An infant with hypoplastic left heart syndrome with severe cardiac failure and dependence on respiratory support on PICU despite appropriate initial surgery. The dilemma here related to conflicts regarding ongoing management. While the team consensus supported a palliative approach, the parents were in favour of further aggressive intervention. Case 3: A family who elected for termination of pregnancy following a fetal diagnosis of congenital cardiac disease, generally associated with a favourable prognosis with surgical intervention, despite detailed antenatal counselling.

DiscussionThese cases highlight the difficulties healthcare professionals may experience in balancing respect for the prima facie principles of beneficence and non‐maleficence and parental opinion, in situations of disagreement regarding proposed management strategies for minors. The role of clinical ethics teams and the courts in facilitating this process will be examined together with the issue of distributive justice with the attendant implications for allocation of finite resources.

G/TUES/LAW2 Is the provision of effective and ethically appropriate palliative care hampered by religious, cultural and ethnic values?

D. Rajapakse, V. Larcher. Great Ormond Street Hospital, London, UK

AimsTo describe the ethical principles involved in the management of two children from ethnic minority backgrounds referred to the paediatric palliative care team of a tertiary children's hospital. To describe the outcomes in these cases, for the child and family. To describe issues highlighted during professionals' debriefing and reflective discussions.

MethodRetrospective analysis of the case records and minutes of professionals' meetings and meetings with the families were carried out for two children from different ethnic backgrounds and religions. Both families were non‐English speaking. They had been referred to the paediatric palliative care team between September 2005 and August 2006.

ResultsIn both cases: there was professional consensus that continuing intensive care conferred more harm than benefit; the parents felt that withdrawal of intensive care was unacceptable on cultural and religious grounds; mediation, advocacy with independent translators, social work interventions and provision of independent second opinions failed to resolve entrenched attitudes; discussions ranged over 4 weeks, involved 6–8 multidisciplinary meetings but failed to achieve resolution during continuing intensive care; the parents avoided formal discussions with professionals, but insisted on the continuation of full intensive care. In case A, a judicial ruling was obtained that permitted the withdrawal of intensive care. In case B, the child was weaned from ventilation. The parents initially agreed to a DNAR order, but subsequently rescinded this.

DiscussionAlthough religious and cultural differences were cited as the cause of conflict between professionals and parents, it is likely that communication problems and disagreement about prima facie moral principles had greater impact. Professionals nevertheless have a duty to ensure that discussion of ethical principles is open, transparent and comprehensible. We suggest that the early anticipation of ethical disputes should trigger appropriate use of advocacy and communication in a culturally sensitive context, as a means of preventing escalation and avoiding confrontation.

G/TUES/LAW3 Children's consent and paediatric research: is it appropriate for healthy children to be the decision‐maker in clinical research?

T. Waterhouse, T. Hope, J. Savulescu, A. Stein, A. Pollard. University of Oxford, Oxford, UK

AimsGuidelines regulating paediatric clinical trials are increasingly placing the emphasis on the views and decision‐making of children, even pre‐adolescent ones, whilst sidelining the role of parents. A pilot study was conducted in an attempt to determine the appropriateness of asking healthy young children to make a decision regarding participation in a research study.

MethodsHealthy children aged 6–8 years, taking part in the follow‐up to a vaccine study which involved a blood test, were enrolled. Study information was provided to each child verbally to satisfy the assent requirements. Following venepuncture each child completed an interview to establish understanding of the vaccine study. Parental views concerning their child's ability to make a decision regarding research participation were also sought.

ResultsSeventy three children participated with a mean age of 7 years and 1 month. We found that many of the children involved in the study lacked the capacity to understand concepts relating to a simple study and the findings show there to be a vast gulf in the understanding and needs between different individual children of a similar age. The majority of parents (75%, n = 55) believed that they themselves should make the decision about study participation, though it is clear that a significant minority of parents (25%, n = 18) believed that it is right to involve the child in that process. Only 42% (n = 31) of children believed that they had any choice about participation in venepuncture, even though this was made explicit beforehand.

ConclusionsThis exploratory study suggests that new guidance about the requirements for informed consent involving children is needed, that can respect the autonomy of the child and the role of the parent, whilst recognising the limited capacity of some children to understand age‐appropriate information.

G/TUES/LAW4 Can provision of Clinical Ethics Support be financially justified? A year's experience at a children's hospital

V. Larcher. Great Ormond Street Hospital, London, UK

AimsThere is increasing recognition of the need for clinical ethics support and training, yet costs/benefits are uncertain. Here we analyse the cost of providing these at a children's hospital and consider how benefits may be assessed.

MethodsReview of costs, case discussions, outcomes, training given using UK Clinical Ethics Network template for case discussions for 2005–6

ResultsClinical Ethics Support (CES) was provided by a consultant in Clinical Ethics (0.3 WTEs, 3 PAs) and a Clinical Ethics Committee (CEC) with secretarial support (0.05 WTEs). The CES reviewed 49 cases (29 active, 20 retrospective) from a wide range of specialities at an aggregate cost of approx £600 each. All involved multidisciplinary teams. Financially important outcomes of retrospective discussions were to limit or withhold future life sustaining treatments (LST) or change goals of care in 12. Discussions in 29 active cases resulted in decisions to withhold or withdraw LST (4), to limit its use (10), or to continue or escalate active treatment in 15. Palliative care was instituted by the hospital's palliative care service in 10 of 14 cases in whom goals of care were changed. A total of 86 formal training opportunities were provided as an integral part of the CES service. These comprised all case discussions (49), CEC meetings (11), seminars and lectures (21) and detailed ethical debriefings (5). Evaluations, where undertaken, gave scores of >4 out of 5 for content, relevance and presentation. Numerous informal, discussions were also held

ConclusionsEthically justifiable decisions to withdraw, withhold or limit treatments, or that change goals of care from cure to palliation, may generate cost savings, but equally justifiable decisions to continue or escalate treatments incur costs. Delivery of in‐house ethics training has cost benefits but support of staff may have benefits whose cost may not be quantifiable in financial terms but are nevertheless important for service provision.

G/TUES/LAW5 Doctors' interpretation of child law: a gulf between rules and practice?

K. Yallop, D. Keveitiyagal, R. Wheeler. Southampton General Hospital, Southampton, UK

IntroductionThere is much concern that doctors are inadequately prepared for the legal and ethical aspects of medical practice. It has been suggested that the General Medical Council should provide more rigorous control of education in law and ethics.

MethodsTo study their knowledge of the implications of child law on medical practice, we have asked 120 children's doctors specific questions regarding child law. A range of doctors of differing grades and experience were questioned, including general and specialty paediatricians, neonatologists, general and subspecialty surgeons, anaesthetists and intensivists. Each doctor was interviewed individually using a standard set of detailed questions. Demographic data and previous exposure to health law and ethics were recorded.

ResultsThe results confirmed widespread uncertainty throughout the study group. This was evidenced by the variety of responses to fundamental questions such as the age at which childhood ends. There was considerable confusion surrounding parental responsibility within the unmarried family. Recent changes in the law regarding paternal parental responsibility have only compounded this problem. Fewer than half of respondents were clear about the relationship of competence to chronological age. Alarmingly, many doctors did not appreciate the legal safeguards enabling them to provide emergency lifesaving treatment. It was evident during the completion of the questionnaires that even among those doctors who answered correctly, there was significant confusion, and an almost universal desire to be taught more on this topic.

ConclusionsA significant gap in doctors' knowledge has been demonstrated. This extends beyond mere legal propriety; it is evident that the provision of timely lifesaving emergency treatment may be compromised by the ignorance of one quarter of the respondents. Such a situation lends weight to the call for education in healthcare ethics and law to doctors at all stages in training.

G/TUES/LAW6 Parenteral nutrition to preserve the life of infants with irreversible intestinal failure: development of guidelines for consistent and ethical decision‐making

M. S. Murphy, H. Draper. University of Birmingham, Birmingham, West Midlands, UK

BackgroundInfants with intestinal failure (IF) require parenteral nutrition (PN) if they are to survive. Some gut disorders are irreversible and permanent. These would therefore require lifelong PN, normally given at home under parental supervision. As is the case with other challenging health technologies clinicians hold varied views on the use PN in this context. For example, some surgeons may not offer PN to infants who suffer ischaemic necrosis of the entire small bowel. PN is associated with significant morbidity and mortality and has a major impact on the “quality of life” of both patient and family.

AimTo provide guidelines on decision‐making in this difficult clinical area, in order to minimise inconsistency and avoid unethical practice.

MethodsIn partnership with the Birmingham Children's Hospital Ethics Advisory Group and the Ethics Committee of the Royal College of Paediatrics and Child Health we developed guidelines on the use of PN in infants with irreversible IF.

ResultsThis guidance document provides a working definition of IF. It reviews the diverse conditions responsible for IF and discusses the probability or otherwise of eventual PN free survival with these disorders. It reviews changes in medical practice in relation to the use of long‐term PN, and the possible significance of recent progress in small bowel transplantation. It discusses current practice in the management of infants with acute ischaemic infarction of the entire small intestine in comparison with other “non‐surgical” disorders. The current data on morbidity, mortality and quality of life are reviewed. Progress has been achieved, for example in relation to small bowel transplantation. The possibility that future developments might improve current outcome is discussed.

ConclusionsBased on these considerations the document draws conclusions and provides guidance on good practice, highlighting an ethical approach to decision‐making. The central importance of parent involvement is emphasised.

G/TUES/LAW7 Further erosion of clinical independence: do the courts really know best? The aftermath of Re MB

Alun. Elias‐Jones. Leicester

An NHS Trust in the case of MB sought to support the decision of the medical staff to withdraw ventilation of MB and revert to palliative care. MB suffered from spinal muscular atrophy (SMA Type 1) and would not likely survive if ventilatory support was withdrawn. Mr Justice Holman considered the decision in Re C who similarly suffered from SMA Type 1 where the court agreed that ventilatory support could be withdrawn, and the removal of Stephen Bland's nasogastric tube feeding, but still found that the ventilatory support of MB should continue.

There now appears to be an increasing reluctance of the courts to follow the bona fide made decisions of the treating clinicians at variance with the principle established by Lord Donaldson MR.

In Re J, as shown by the recent high profile cases of Charlotte Wyatt and Luke Winston‐Jones where the courts have shown an increasing reluctance to follow the principles established in RCPCH Framework document to manage such tragic cases. When this framework has been followed and even supported by the English legal system this has then been overturned in the European court. At the time of Re T, who required a liver transplant, the decision to reject the unanimous medical advice was at the time thought to be a decision at variance with legal precedent in the UK. Now it seems the courts will give greater weight to the parents' views rather than the sincerely held views of the medical team. Will this mean more or less of these cases going to dispute in the courts? Is there a better way to resolve these conflicts in the best interests of the children other than in the blaze of public and media attention?

Re MB [2006] EWHC 507 (Fam) Re C (A Minor) (Medical Treatment) 1998 Lloyds MLR 1 Airedale NHS Trust v Bland 1993 AC 789 Re J (A Minor) (Child in care: Medical treatment) (1993) Fam 15 Withholding and Withdrawing Life‐sustaining treatment in Children. RCPCH 2nd Ed June 2004 Glass v Uk (Application No 61827/00) 2004 FCR 553 Re T (A minor) (Wardship: Medical treatment) (1996) 35 BMLR 63 (CA)

G/TUES/LAW8 A critical appraisal of the best interests standard, as used in decisions to limit or withdraw life sustaining treatment in the paediatric intensive care unit, with reference to Re MB

D. Inwald. St Mary's Hospital, London, UK

AimsApproximately 80% of deaths in paediatric intensive care units (PICUs) occur as a result of a decision for limitation or withdrawal of life sustaining treatment (LWST), made in the best interests of the child. The aim of this paper is to examine the ethical and legal principles which underpin such decisions, with particular reference to the recent High Court case Re MB.

MethodsExamination of current philosophical, ethical and legal literature and the judgment in Re MB.

ResultsM was a ventilator‐dependent 18‐month‐old child with SMA Type 1 and apparently normal cognition. The NHS Trust treating the child sought a declaration from the Court that it would be lawful and in the child's best interests to withdraw ventilation, while the parents sought a declaration to the opposite effect. Mr Justice Holman decided against the joint medical experts' report, which recommended withdrawal of ventilation. He stated it “was not currently in the best interests of M to discontinue ventilation with the inevitable result that he would immediately die. It was positively in his best interests to continue with continuous pressure ventilation and with the nursing and medical care that properly went with it”. Perhaps one reason for the unexpected conclusion in this case is that the best interests approach obliged the judge to weigh continued life against withdrawal of treatment and certain death. Thus, Mr Justice Holman would have had to declare that it was in M's best interests to be dead in order to allow withdrawal of ventilatory support.

ConclusionThe best interests test is not the objective test it purports to be. It is individualistic, in that often only the child's interests are considered. Most importantly, it has a tendency to result in a course of action which is best for the individual, no matter how marginal the benefit or what the resources or interests of others are. The best interests standard could be improved by redefining it to include factors other than the interests of the child. The priority of the child's interests should not be absolute in end‐of‐life decisions.

[2006] FLR 319

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