It is a given that people are becoming increasingly consumerist in their attitude towards public services. But a report today shows just how fast that change is happening. Two years ago, health management expert Chris Ham was co- author of a study of the "Child B" affair which had brought into sharp focus the issue of healthcare rationing. The study suggested that confrontations between health authorities and patients and their families could be avoided if there was direct communication between the two sides when decisions about treatment were being made.
In today's report, however, Ham and a co-author admit communication is no panacea. They say people are so ready to challenge what "experts" tell them, and to go to the courts or the media, that authorities must act on several fronts to defend a decision to restrict treatment.
There "may be limits to which face-to-face discussions and the opportunity to receive a direct explanation of the basis of decisions will succeed in compensating for outcomes other than those sought unless there is scope for those decisions to be changed", say Ham, director of the health services man agement centre at Birmingham University, and Shirley McIver, senior fellow at the centre.
Their conclusion comes after assessing five anonymised cases. Ham and McIver interviewed the chief executives or directors of public health of each authority, using a checklist of questions arising from the Child B case in which 11-year-old Jaymee Bowen was denied further treatment for terminal leukaemia.
The patients and/or their families in the five cases were not interviewed lest the experience distress them or further damage relations with the authorities.
One case involved a four-year-old with a brain tumour refused further treatment; the second concerned a woman with advanced ovarian cancer whose doctor wanted to prescribe Taxol, then an unproven drug; the third involved a patient wanting a sex change operation; the fourth centred on a young man with multiple sclerosis whose clinician wanted to prescribe beta interferon; and the fifth concerned an eight-year-old with haemophilia whose doctor wished to switch her to an expensive and less well proven treatment to reduce the side effects.
All but the last case attracted media attention, putting the authorities under more pressure, and two went to court. Few decision-makers were confident of their ground. The public health director in the first case told the authors: "Even in discussion with my own family there was disagreement."
The report, Contested Decisions, published by the King's Fund health policy institute, says the issues raised by the cases should be of particular interest to primary care groups. "With GPs increasingly involved in commissioning services, there is the potential for conflict between their role as agents and advocates for individual patients on the one hand, and as commissioners of services to improve the health of the community on the other."
Ham, who is seconded to the Department of Health, says: "There will be times when [the NHS] has to refuse a medical treatment because its potential benefits do not match its costs to the NHS or the risk to the patient. Making those decisions is fraught with difficulty, but there are ways of improving the ways in which they are made."
• Contested Decisions is available at £10.99 from the King's Fund bookshop on 020-7307 2591
