Health: The painful dilemma of who not to treat: Doctors say society must decide how health service resources should be 'rationed', writes Richard Woodman

'We don't use the word rationing - we call it priority setting,' said the official at the Department of Health.

This prize example of Orwellian double-speak is a sure sign that something significant is happening in the health service.

That something is the first public debate on rationing in health care - whether it is inevitable and, if so, who decides, and on what basis, between giving Mrs Jones a hip replacement or Mr Smith a hearttransplant.

While the choices will, one hopes, never be as stark as this, the debate being launched next week by the British Medical Association is nevertheless vital. Its outcome will determine whether the NHS continues trying to do the best for every individual patient or concentrates on providing a greater number of effective treatments for the same overall cost.

It is this sort of dilemma that confronts Dr Ted Baker, consultant paediatric cardiologist at Guy's Hospital, London, when he sees babies born with severe congenital heart defects. Without treatment he knows they will die, but he is also painfully aware that treating them can cost up to pounds 100,000 and that the babies still have little hope of surviving into adulthood. More important, they will require weeks of intensive care, in effect denying beds to other babies whose prognosis is much more favourable.

Dr Baker stresses that he treats everyone he can and that it is up to society to decide how health care should be rationed. 'Our duty as doctors is to each individual patient, not to the NHS as a whole,' he says. 'It is not fair to expect doctors to make rationing decisions.'

While there is nothing new about rationing, it has traditionally been done by means of waiting lists. It was covert. The system was controlled by GPs as the 'gatekeepers', who decided when to refer patients, and then by the consultants who controlled the outpatient and inpatient lists.

Now doctors are increasingly saying that they do not want this responsibility. They do not want the blame for not treating patients when money runs out or when their hospital does not offer a particular procedure.

Amid the government calls for more openness, a number of health authorities have started to list procedures they will not fund. In Nottingham, for instance, the authority has decided not to accept referrals for cosmetic surgery, varicose veins and fertilisation treatment unless a very good case can be made.

According to the BMA under-secretary, Dr Andrew Vallance-Owen, that means doctors have to tell patients: 'I am sorry, you have this condition, but we don't treat it in this part of the country.' In effect, he says, 'it depends on your postcode as to whether you can have certain procedures'.

So far, only marginal procedures such as varicose veins, removal of tattoos and sex change operations have been excluded. But the worry is that more important treatments could be barred if pressure to save money forces the NHS to accept it can no longer provide comprehensive care from cradle to grave.

Already many patients who want an abortion or infertility treatment depend on the private sector. In 1991 in England and Wales, of the 179,522 abortions performed only 84,369 were 'on the NHS'.

One person under intense pressure to save money is Dr Geoffrey Carroll, medical director of the North Essex Health Consortium, which purchases health care on behalf of three authorities. He says that some managers are questioning the value of buying other services such as treatment of eating disorders.

He believes it is much better to ration health care openly rather than put patients at the end of a waiting list knowing they will never get treated.

He points out that the Department of Health has periodically put out guidance notices reminding health authorities that particular conditions, such as sterilisation, should continue to be available on the NHS. 'The probability is that a number of these notices or assumptions about the full range of care that can be provided will now have to be closely examined,' he says.

In addition to the conference next week to raise this debate, the BMA is carrying out a survey to find out what priority doctors, health service managers and the public attach to hi-tech procedures such as heart transplants and Cinderella services such as mental illness.

It is the sort of exercise that rings a painful bell to some residents of Oregon in the United States, centre of the world's boldest democratic experiment in health-care rationing.

While the aim of the Oregon Health Plan - to provide basic health care to 120,000 people living in poverty - is noble, the means is controversial. Deciding that it could not afford everything, the state set up a commission of 11 professional and lay people. Through a series of telephone questionnaires and public meetings they put in order of priority a list of 709 conditions. The commissioners considered both 'medical effectiveness' and 'value to society'.

They divided the services into three main categories - 'essential services' such as maternity care, head injury and peritonitis, which should be covered; 'very important' such as hip replacements, which should be funded if at all possible; and services 'valuable to certain individuals but significantly less likely to be cost effective or to produce long-term gain,' such as in vitro fertilisation or advanced cancer with poor survival chances.

The list is socially loaded as well. Treatment of alcoholism and drug addiction is not offered, neither is end-stage treatment of Aids. Acute upper respiratory tract infections - the bad coughs often associated with smoking - are well down the list.

The legislature then said it had enough money to fund the top 587 conditions but that anything below that line was excluded.

Elaine Pinney, director of Oregon Health Action Campaign, which wants universal access to health care, warned that, as in the UK, health-care costs in Oregon are increasing while tax revenues plummet. She asks: 'The figure of 587 is the cut-off point at the moment but what happens if there is not enough money in future? Do you simply chop from the bottom?'

Experiments in the UK, such as an 'appraisal' method used in South Sefton, Merseyside, to find how the local population rated health problems, showed the perils of relying on the community to prioritise essential health requirements. The South Seftonians failed to list vaccination and immunisation of children as an important problem.

Another difficulty, according to Linda Lamont, director of the Patients' Association, is that authorities are having to make tough choices on how to spend the money while knowledge about the real effectiveness of different procedures is still in its infancy.

But this is the way that health spending is going. Virginia Bottomley, Secretary of State for Health, said recently that 'more and more evidence is emerging on the relative effectiveness of treatments' and urged managers to 'examine the success of the treatments they are purchasing and to purchase those which provide the greatest health gain'.

Using concepts such as the quality adjusted life year, or Qaly, to make the best use of scarce resources is one way forward, but it remains controversial. These build on the crude test of whether the treatment cures the disease and keeps people alive longer, and adds in costings and the quality of life gained.

A Qaly league table shows that the relative cost of putting a patient on kidney dialysis is pounds 14,000 per year of quality life gained, whereas a kidney transplant costs only pounds 3,000. But that knowledge is of little value unless the desperate shortage of donor organs is eased.

'The idea of Qalys is all very well in academic circles, but it does not work so well when it comes to Mrs X and her individual condition,' adds Dr Vallance-Owen. 'You can make some broad decisions along those lines, but when it comes down to it, one extra year of life, even in terrible pain, may be a price worth paying for one person, even though the cost would be staggering, whereas five years with only moderate pain might be more important for somebody else.'

The very idea that rationing in health care is inevitable is challenged by the Royal College of Nursing's general secretary, Christine Hancock.

She says: 'If demand for health care were to be met in full, we could avoid costly and unnecessary problems associated with waiting for treatment, ranging from depression and stress to immobility and total dependence.

'Perhaps some of the money and effort at present spent on exploring new and equitable ways of allocating so- called scarce resources could be used to put the case for increasing current expenditure, or on actually providing some of those essential services.'

Diseases that are untreated in Oregon

IN OREGON in the United States, 709 conditions and diseases were placed in order of priority in a scheme to provide the poor with a free health service. The state then decided how much it could afford. Conditions below 'line 587' are not funded.

This is a selection of the diseases that will not be treated in 120,000 poor Orgegonians who cannot afford to pay for medical care.

Benign skin tumours and moles

Deformities of the spine

Benign growths of vocal cords - which can affect the voice

Acute viral hepatitis

Cancers that have spread to other parts of the body, where treatment will not result in more than 5 per cent of the patients surviving for more than five years

Male and female infertility, including treatment to improve ovulation

Surgery on blocked fallopian tubes

Removing raised scars

Joint and muscle sprains

Liver transplant for liver cancer

Obesity

Venereal warts

Non-infectious gastroenteritis and colitis

Coughs and colds

Treatment of alcohol and drug addiction does not even make it on to the list.

(Photograph omitted)