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It has never been all plain sailing in paediatrics and the process of making a wise treatment decision in the best interest of a sick child will, from time to time, result in a conflict of views between the health professionals and the parents. Paediatricians who lead healthcare teams will usually have developed strategies to reach consensual agreement in the great majority of these disputes, often after several days of discussion with the parents and different members of the team. It would be foolish for any health professional to think that an intractable dispute only happens when a less-experienced colleague is lacking the requisite communication skills. To say “this could never happen to me” is to bury your head in the sand.
The most strongly expressed differences of view are likely to arise when there is a perceived rationing of resources or withdrawal or withholding of life-sustaining treatment, particularly when the issue concerns the likely duration and quality of the child's life. Therefore the majority of serious disputes are encountered in the fields of neonatology, respiratory intensive care, oncology, transplantation and palliative care. However, an intractable impasse can arise in any area of paediatric practice. How should paediatricians behave if they sense that they are getting into one of these situations? To seek a second medical opinion is often helpful, but it may not always be viewed as completely independent and, should the second be in agreement with the first, it may be seen as collusion between consultants, or even a subtle form of coercion. The strategy of allowing parents to choose their own second opinion may prove to be a good one, as long as the process remains transparent and does not lead to prolonged ‘doctor shopping’ and selective ‘cherry picking’.
If the process of seeking a second opinion does not result in a resolution of the disagreement between parents and doctors, it is usually at this point that it becomes necessary to think about seeking a declaration from the court, which tends to result in entrenchment and a further escalation of already strongly held opinions. However, one advantage of initiating proceedings is that the child will have his or her own appointed representative from the Child and Family Court Advisory Service, sometimes known as a Guardian ad Litem, thereby ensuring that the child's voice is properly and independently represented.
It is not the intention here to examine the reasons why negotiations between health professionals and those with parental responsibility sometimes come to an impasse, but it goes without saying that prevention would always be better than trying to find a cure after the event. The case that is put forward is that alternative dispute resolution, if delivered in a truly independent manner by an expert mediator, might be able to provide a better solution than the externally imposed judgement of the court.
What is wrong with going to court?
When doctors and parents cannot agree, seeking a legal solution to what are fundamental differences of ethical opinion may sometimes appear to be the only way to resolve them. However, while it may give the parties involved an opportunity to have their say in court, there is much evidence to suggest that the confrontational nature of a legal case often fails to resolve the issues which precipitated it. A survey of medical negligence claimants revealed that 70% were dissatisfied with the outcome of their legal action.1 The main sources of dissatisfaction focused on the inability of the parties to come to an agreement with which they were both satisfied and a feeling that the outcome of their legal action left them unable to put the matter behind them. The authors comment that what seemed to underlie these responses “is the need for a ritualistic closure of disputes and a desire for a more conciliatory process that does not result in a winner or loser”. Using the courts to decide cases of ethical complexity inevitably leads to a position in which there are perceived to be winners and losers in situations which are not black and white, but are often composed of multiple shades of grey which would be better resolved by ethically acceptable compromise.
The burdens and benefits of medical treatment and their impact on quality of life has proved to be challenging for the judiciary whose duty is always to decide what is in a child's best interests. However, the ethical dilemmas involved in making such decisions are complex. One has to start with the question: “To whom is a particular medical treatment likely to be burdensome or beneficial?”. If it is decided that the issue is what is burdensome to the child, the next question is: “Who is to decide what is burdensome to the child if he cannot express his own view?”. Just as best interests can be interpreted from a relational point of view, so too can the concept of burdens and benefits. What may be burdensome or beneficial to the medical staff may not match what is burdensome or beneficial as far as a family is concerned.
In 1995, the Court of Appeal had to consider the case of Child B, for whom a bone marrow transplant had already failed to cure her leukaemia. The father wished the doctors to perform a second bone marrow transplant – a procedure which would have caused considerable suffering for an immeasurably small benefit and which the paediatric oncologists were reluctant to undertake. The court of first instance had quashed the decision of the Cambridge Health Authority not to fund any further treatment. Lord Bingham, then Master of the Rolls, in allowing the appeal commented that “the courts are not, contrary to what is sometimes believed, arbiters as to the merits of cases such as these” and stated “were we to express opinions as to… the merits of medical judgement… then we would be straying far from the sphere which, under our constitution, is afforded to us”.2 Entwistle et al discuss the misinformation provided to the public by the media circus that surrounded the Child B case.3
The more recent case of Charlotte Wyatt, despite a very well conducted judicial process and an appeal by the parents that upheld the first instance judgement,4 ended in a lose-lose-lose situation: an embittered and fragmented family, a child in foster care and six-figure costs for the hospital trust. The medical staff were left feeling battered and bruised and there was no real closure to this tragic case. Brazier doubted the suitability of adversarial litigation to reach the conclusion that “the judge was in a sense undertaking in part the role of mediator. Yet as a mediator he cannot command total confidence because ultimately he decides”. She further commented that “the transformation of private tragedy to a public spectacle is disturbing”.5
What is mediation and how might it help?
The key to mediation is that the mediator does not decide. The aim of mediation is not to produce answers but mutually agreed and accepted solutions to deeply held differences of opinion (table 1). In the UK it has more often been used to resolve commercial disputes than ethical ones, but that is changing. Mediation can involve families, religious advisers and others who may be important in helping resolve underlying differences of opinion. The key is that all sides are given the opportunity to ‘tell their story’ to a skilled and impartial third party.
Mediation takes place in a neutral setting and has been defined as “a flexible process conducted confidentially in which a neutral person actively assists the parties in working towards a negotiated agreement of a dispute or difference, with the parties in ultimate control of the decision to settle and the terms of resolution”.6
The results of the pilot study involving the use of mediation to resolve medical negligence cases found that the benefits of mediation included (1) addressing the real causes of the dispute and (2) reducing the alienation of the parties and restoring relationships between them.7
Mediation was used with some success to resolve the damaging dispute between the National Health Service (NHS) and parents at Alder Hey, where the organs of babies and children had been retained without the knowledge or consent of their parents. The mediation resulted in agreement on the financial compensation to be awarded, but equally importantly, also involved a public apology from the NHS Trust and public acknowledgement of the role parents had played in bringing about changes in medical practice.8
In cases involving contested medical decisions for children and young people with life-threatening illnesses, the issue is not one of financial compensation but of helping the parties involved reach a better understanding of each other's position and restoring or maintaining trust. In the field of neonatal medicine, where consensus on end-of-life decisions frequently needs to be established, the Nuffield Council report recommends that “the UK Departments of Health examine the benefits that mediation may offer”.9 New guidance from the General Medical Council which came into force in 2010 also points to mediation as a way of resolving disagreements about a child's medical treatment at the end of life.10
The situation where only one of two parents wants all treatment to continue against medical advice is often fraught with tension. In November 2009, the case of a 13-month-old boy with a presumptive diagnosis of congenital myasthenic syndrome, identified only as RB, occupied the media for a week.11 The case resolved itself on the sixth day of the High Court hearing without the need for any judicial pronouncement, when the father changed his mind after hearing expert independent medical evidence presented to the court. This kind of case would lend itself very well to a mediated resolution, thus avoiding the harrowing, time-consuming and expensive adversarial process of court.
How could ethical mediation be provided and by whom?
The issue of impartiality is central to mediation. For the parties involved to have confidence in the process, those who mediate must be and be seen to be, completely independent. Consultation with clinical ethics committees about individual cases may sometimes be appropriate and helpful, but convening the committee to act proactively may prove difficult and its function is more likely to be one of conciliation rather than resolution.12 The committee would lack the necessary independence from the hospital trust to be able to mediate.
Mediation does not have to be carried out by a lawyer, but the mediator requires a knowledge of medical law, particularly the law of consent. Medical ethics is the foundation of this kind of mediation, but the mediator does not have to be a moral philosopher. Mediation probably should not be carried out by a paediatrician but rather by someone with a wide understanding of paediatric issues and access to independent expert medical advice. Although the main focus has been to develop the capacity to mediate in life-or-death situations, there are, of course, many other disputes over the medical treatment of children and young people that may be difficult to resolve within the confines of the ward, the clinic or hospital trust.
After taking advice widely within the profession, it was decided to set up an independent body specifically to offer mediation in the complex field of medicoethical disputes involving children and young people. The mediators would have an understanding of paediatric practice, a background in medical ethics and law as well as an accredited qualification in mediation skills. Above all, the parties that may wish to use the mediation service would need to be certain of the skills, the effectiveness and the absolute independence of the setup. The Medical Mediation Foundation13 is a not-for-profit organisation that was awarded a grant from the Department of Health in September 2010 to develop a pilot mediation model along these lines. The evaluation of the pilot by an independent and experienced healthcare researcher will include giving pre and postmediation questionnaires to the participants not only to establish the metrics of success but also to seek evidence of any possible harm resulting from the process.
Following evaluation of the pilot, it is intended to develop the service and make it more widely available to paediatricians, hospital trusts, patients and parents. Although mediation costs will undoubtedly be less than those associated with litigation, it must be borne in mind that not all cases will be resolved by mediation and some cases may still end up in court.
The aim of the mediation scheme will be to offer an alternative means of resolving a number of seemingly intractable disputes without the necessity of seeking an externally imposed ruling from the court. It is hoped that this will result in a more acceptable closure to such disputes and a minimising of the financial, emotional and publicity costs that accompany them.
Competing interests Simon Meller is a Trustee of the Medical Mediation Foundation. Sarah Barclay is the Founder of the Medical Mediation Foundation and a Trustee of the UK Clinical Ethics Network.
Provenance and peer review Commissioned; externally peer reviewed.