Media coverage of the Child B case

Outline of the case

Child B, whose identity was originally concealed by court order to protect her from the knowledge of how ill she was, recovered from acute lymphoblastic leukaemia diagnosed when she was 5 but later developed acute myeloid leukaemia. In January 1995, when she was 10, NHS consultants at both Addenbrookes and the Royal Marsden hospitals said that she had about eight weeks to live and that the only possible treatment, intensive chemotherapy and a bone marrow transplant (which would be her second) was very unlikely to succeed and was not in her best interests. Her father did not accept this and sought opinions from other doctors in Britain and the United States. He found a consultant in London, Peter Gravett, who was prepared to treat his daughter in the private sector, but Cambridge and Huntingdon Health Commission (the health authority) refused to grant an extracontractual referral for the £75 000 treatment. Child B's father challenged this refusal in the High Court, which ruled on 10 March 1995 that the health authority should reconsider its decision. However, Appeal Court judges later that day overturned the ruling and said the decision had been made rationally and fairly.

The case attracted much publicity, and an anonymous private benefactor paid for the treatment B's father wanted. Intensive chemotherapy met with only limited success, so Dr Gravett decided against a second bone marrow transplant and treated child B with an experimental treatment, donor lymphocyte infusion. She went into remission and survived longer than doctors had predicted. In October 1995, her father went back to court to get the identification ban lifted so he could publicise her case to raise money for further treatment. Child B was revealed as Jaymee Bowen, and further publicity followed.

The newspaper sample

To assess the coverage, we chose and analysed a sample of newspapers. Eight daily national newspapers—the Daily Express, Daily Mail, Daily Mirror, Daily Telegraph, Guardian, Independent, Sun, and Times, together with their Sunday equivalents—were included in the study. They represent a spectrum of reporting styles and political allegiances. We retrospectively searched issues from 10 March to 15 March 1995 (the period around the original court cases) for articles that were primarily about the Child B case and articles that covered a related issue or case and were printed as part of a spread of articles about Child B. We read each of these articles and systematically noted quotations or points relevant to particular aspects of the case. Further details of the methods are available elsewhere.2

We found 149 relevant articles, an average of over 18 per newspaper for the six day period. The case made front page news and was the subject of editorial comment at least once in all the newspapers studied. It also attracted “in depth” coverage, with most newspapers publishing spreads of articles covering various aspects of the case. The Daily Mirror and Sun both “adopted” the cause of Child B and ran appeals named after her to raise money for leukaemia research.

Editorial stances

The newspapers adopted some strikingly different editorial stances towards the case, varying in their judgments about the correctness of the health authority's decision (see box 1) and interpreting the significance of the case in a range of ways. Leaders in the Daily Mirror and Sun started from the position that Child B “needed” the treatment and found it wholly unacceptable that she would not be given it by the NHS. They presented the health authority's decision as quite simply wrong and implied it was reached because financial considerations had been allowed to dominate—an indication of the sorry state of affairs prevailing in the NHS. (This was consistent with the Daily Mirror's tendency, in recent years, to give a high profile to incidents such as ward closures and delays in treatment and present them as indicators of deterioration within the NHS and the failings of the current Conservative government). A selection of quotations in box 2 illustrates the position of these two tabloids.

Leaders in other newspapers more readily acknowledged the complexity of the case and considered some of the issues it raised regarding treatment and funding decisions. Relatively few, however, focused on the issue of whether the proposed treatment was in Child B's best interests and questioned whether it was effective and appropriate for her. Only five out of 16 editorial articles (in the Daily Express, Guardian, Independent and Independent on Sunday, and Times) mentioned the possibility that it might cause more harm than good, or acknowledged that most medical experts felt it was not the best course of action. The Daily Telegraph slightly ambiguously reported: “In the case of child B, doctors felt that the suffering she would undergo in the course of further treatment, and the unlikelihood of her surviving it, made the expenditure unwise.”3

The basic positions adopted in leader articles were generally reflected in the news reporting of each paper. Opposing viewpoints were included but tended to be marginalised, appearing on letters pages, in columns, or as other first person opinion pieces.

OPPORTUNITY COSTS

The Times reported that the precise grounds for the Health Authority's decision were not clear, and commented that: “While subjecting a dying child to needless futile suffering would strike most people as undesirable, refusing treatment on the ground of cost is more difficult to accept.”4 Other editorials were more certain that costs had played a part in the health authority's decision, and most discussed the case at least once in the context of how money was spent within the NHS. However, they did this in two rather different ways.

The broadsheet editorials, with the exception of the Daily Telegraph and Sunday Telegraph, implicitly accepted that the concept of opportunity costs supported the argument for not treating Child B, assuming that the money could and would be spent on more effective treatments which would bring greater health gain than the one proposed for her. The Daily Express also explicitly stated: “Resources used on the little girl cannot be used on other cancer sufferers, including those whose chances of responding to treatment, and thus survival, are greater.”5 The Daily Telegraph defended the health authority's decision as correct because it was based on medical advice but felt that “public understanding of this dilemma would have been better were the NHS not perceived as inefficient and bureaucratically arrogant. It is harder to defend the decision not to treat child B when one hears of the spending spree on the administration of the NHS.”3

Editorials in the Sun and Mail on Sunday used the concept of opportunity cost to support the argument that child B should have been treated on the NHS, presenting the treatment proposed for her as a better use of money than other current NHS expenditures. This theme recurred in several news and feature articles in other newspapers. Box 3 shows the uses of NHS funds thought to be less worthy than the proposed treatment for Child B. The irony of the fact that the costs of the court hearings were enough to pay for the contested treatment was also highlighted in several articles.

Reporting of factors contributing to the decision THE CHANCES OF SUCCESS

One of the arguments which the health authority used to support its position that further chemotherapy and a second bone marrow transplant were neither appropriate nor cost effective in this case was that the treatments had only a very small chance of success. Against this, Child B's father argued that any chance of survival, however small, was worth taking. Newspaper articles expressed varying degrees of sympathy with these arguments but rarely considered the difficulties of determining the probability of a favourable outcome at which treatments should be given.

Information about the likelihood of success of treatment was often confusing. A wide range of quantitative estimates was reported, but which outcomes they related to (cure or remission) was not always clear, and little consideration was given to the validity of the estimates, the degree of certainty attached to them, or their applicability to Child B. While it was clear that doctors' opinions varied, the reasons for this were not explored and the quality of available evidence about the effectiveness of the proposed treatment was rarely commented on. Box 4 illustrates something of the range of statements about the chances of success made over a four day period in one newspaper.

TREATMENT VERSUS PALLIATIVE CARE

The health authority argued that the proposed treatment would be “distressing” and might do Child B more harm than good. They said her best interests would be served by providing palliative care only. Her father basically argued that the possibility of adverse side effects was outweighed by the chance of survival which treatment offered. Again, newspaper articles varied in their propensity to accept these arguments, and placed different emphases on the possible side effects of treatment.

Many articles did not explicitly mention palliative care, and readers might have assumed that the alternative to chemotherapy and a second bone marrow transplant was no care at all. The only professional counters to the claim that palliative care was the best option were attributed to Dr Gravett and appeared in the Daily Mail, Daily Mirror, and Independent. Dr Thomas Stuttaford in the Times also said: “There is no evidence that a death from untreated leukaemia is likely to be appreciably easier than one from the complications of treatment. The determining factor in the comfort of any dying patient lies in the skill of the doctors and nurses looking after them.”6

EXPERIMENTAL STATUS OF THE PROPOSED TREATMENT

In coming to its decision, the health authority considered the fact that further chemotherapy and a second bone marrow transplant had not been shown to be effective in cases like that of Child B. In a press statement it said the decision had been made “in the light of Department of Health policy to fund expensive new treatments only if they have been shown to be effective.” The Appeal Court judges agreed that the treatment “did not have a tried record of success” and was “at the frontier of medical science.”

The fact that the treatment was experimental rather than of proved benefit was explicitly reported in the Daily Mail, Daily Telegraph, and Times. The Daily Mail and Times also noted that the NHS doctors treating Child B claimed the proposed treatment would be “experimental rather than therapeutic.” Although recent progress in treatments for leukaemia was briefly referred to by several articles, few mentioned that the treatment proposed for Child B might be justified if it was given as part of a research programme to evaluate its effectiveness, thus contributing to knowledge of how best to treat people with her condition. The Guardian alone reported the health authority's solicitor as arguing that the only basis on which the treatment could be justified was for experimental or research reasons.7

The Daily Mirror devoted an article to leukaemia research which attributed current leukaemia cure rates to “brilliant research” and said that it was only through further research that better combinations of drugs and ways to reduce their side effects would be found.8 It described how “the 20 major centres treating childhood cancer throughout Britain work together in the UK Children's Cancer Study Group” and argued that “coordinated research is essential” but made no mention of the fact, reported in a few other papers, that this group had advised against treating Child B, and that she would receive her further treatment outside it.

Treatment decisions

The Child B case led to some consideration in the media of who should make decisions about whether to treat seriously ill children, although newspaper coverage very rarely mentioned that it is now NHS policy to promote patient choice in health care.9 The importance of both medical expertise and the views of the child and family in individual treatment decisions were emphasised, and in many articles some form of shared decision making was implicitly advocated. However, there was little practical advice as to what should be done when doctors and parents disagree, as happened in this case.

The rarity of the kind of explicit challenge to medical expertise which B's father made was scarcely commented on. The admiration expressed in some newspapers for his actions implied that such challenges are sometimes desirable or necessary. This has possible implications for professional-patient relationships and the therapeutic possibilities of these. Media coverage of the Child B case highlighted the fact that doctors sometimes disagree and questioned the extent to which people should have confidence in doctors' advice. It could make people suspect that when doctors advise against treatment, they are motivated by cost considerations rather than by concern to do what is best for the patient. Readers could also have been alerted to the possibility that doctors might sometimes be overruled by health authorities in decisions about expensive treatments. (Doctors' roles as patients' advocates were only rarely mentioned). However, we can only speculate about the effects of this sort of coverage.

A few articles suggested that media coverage of the Child B case could have the effect of reducing the trust which people put in doctors. For example, the News of the World featured the parents of a girl who had died of leukaemia. They were said to be “tortured with guilt” after hearing of Child B's father's fight for further treatment for his daughter. The father was quoted as saying: “I keep asking myself if they let Sharon die because of money as well. B's father had the guts to find out why they were stopping her treatment. I didn't. I never questioned it. I accepted it. But it makes me feel now that if I'd done what he's done would I have got the same answer, ‘We can't afford it’? It's really bugging me. Did I let my daughter die without at least finding out what chance she had and what I could do about it? …You accept what the doctors tell you because they are the experts and you trust them. Now I can't help asking if I did the right thing.”10

Although many reports of the case made it clear that doctors' opinions could vary, there was little explicit consideration of how to judge which doctors are right. The fact that people will probably always be able to find a doctor willing to provide the treatment they want as long as they are able and prepared to pay was occasionally referred to, but neither the possible harms nor the inequity of this attracted much comment.

The imperative to do something for a dying child

Much of the news reporting of this case was consistent with the expectation that something can and should be done to prevent a child from dying. The fact that this case involved a dying child was played up, particularly in the tabloids. Child B's age was mentioned in the vast majority of reports, and the Sun dubbed her “Little B” or “Little miss B.”

Several articles noted that many people instinctively felt that Child B should be given treatment, reflecting widespread reluctance to accept that children sometimes die and a general sentiment that it is better to try something than do nothing. Some more considered pieces acknowledged the emotional pressures to try any treatment that was available but argued that when all the risks, benefits, and uncertainties of the treatment were considered, the hard decision not to treat might need to be taken.

“When a child falls ill with a potentially fatal illness,” said one journalist, “parents naturally wish to do everything possible, and they fear that they will feel guilty later if they do not. There can be no hard rules about whether to intervene or let nature take its course. Each case must be judged on its own merits, but doctors have a moral responsibility to advise against treatment if it will only prolong suffering.”11

The tendency to attach more sympathy to children and be inclined to treat them preferentially was only rarely analysed. A few newspapers commented on the possibility that if health care rationing is done through the media and public sympathy votes, then primacy will often be given to children, whether this is appropriate or not.

Much newspaper coverage reflected the sentiment that all possible technologies should be tried and, at least in “deserving” cases, they should be provided by the NHS. The media accepted with little comment that when the NHS “failed” to provide these technologies, people would seek them privately and would do what they could to raise the money.

Health care rationing

While all the newspapers reported at least once the health authority's argument that its limited resources could be better spent than on Child B, further discussion of the general issue of health care rationing was largely confined to the broadsheet newspapers. Most articles that addressed the issue accepted that some rationing was inevitable, even if they disapproved of the decision made in Child B's case. They frequently pointed out that rationing decisions were not a new phenomenon to health care but the public had simply not been aware of them until recently. All four broadsheets argued that the question of how health care should be rationed warranted public debate. They tended to advocate greater public participation in prioritisation decisions, although a Daily Telegraph leader insisted, “It is right that doctors should determine who benefits because they have clinical expertise.”3 However, they made few practical suggestions as to how this was to be done.

The publicity surrounding the Child B case brought health care rationing to public attention and highlighted (with occasional dissent on this point) the fact that the NHS cannot afford to provide every possible medical technology to everyone who wants it. Again, there were few constructive suggestions as to how decisions should be made about whom to treat. A selection of comments about the significance of the Child B case in this respect is provided in box 5.

Towards an informed public debate?

Decisions about the treatment of seriously ill children and the rationing of health care are both complex and emotive. This study examined the extent to which the media informed the public about the various issues associated with a particular case. Although many issues and arguments were discussed in one or other newspaper article, people who dipped into or read only one newspaper would only have found a very partial view. Publicity brought the case and some of the issues it raised into the open, but it did not necessarily leave people well informed. In particular, the question of whether the treatment was in the child's best interests was relatively neglected. Child B became “the girl refused treatment on the NHS” and her case was quite clearly associated in early media coverage with health care rationing.

Journalists have to work within severe time and space constraints and must write entertaining stories that sell newspapers.12 We should not expect them to provide a comprehensive and detailed analysis of all the relevant aspects of a case like this. The current climate, in which the NHS is highly politicised, means that even cases that are primarily about clinical effectiveness and a patient's best interests come to be seen as examples of rationing.

Public participation in debates about health care rationing is increasingly seen as desirable.13 However, given the limitations of the media, other means will need to be sought if the public are to participate in an informed way.

Cameron Muir provided administrative and technical assistance with data collection. Trevor Sheldon made extremely helpful comments on drafts of this paper.