I don’t normally blog about my former profession, but two recent high-profile cases in the UK have made me reconsider on this one occasion. These cases raise several significant questions. How can it ever be wrong for the desperately worried parents of a sick child to seek the best medical advice they can find? How can it not be right for doctors to speak up in public if they genuinely feels that a colleague’s medical advice is wrong, unnecessary, or even dangerous? In the recent past social workers have often been accused of ignoring obvious warning signs of the physical abuse of children by their parents. Is it then correct to vilify those who see what they consider to be damaging parental behaviour and find the courage to act? Finally is it unreasonable for governments and their agencies, who have to find the huge financial resources required for modern health care, to take expert professional guidance before making decisions on the effectiveness, and also the cost-effectiveness, of drugs and other treatments?
Taken singly it is hard to answer any of these questions in the negative but, acting together, they can make the management of some sick young patients heartbreakingly difficult. Under such circumstances finding a treatment regime which is effective for the child, and satisfactory to both parents and carers, may seemingly be impossible. There may be additional complicating factors. Two perfectly competent physicians could have diametrically opposed ideas about the best type of management. Estranged parents may arrive at totally different views about which medical advice is best for the child whom they share. I feel nothing but sympathy for everyone involved in situations of this type but it will become evident that sympathy leads to no simple solution to their dilemmas.
It may be beneficial to discuss the actual illnesses and treatments involved in the recent cases but before doing so I want to make a number of points clear. I intend to assume, what in fact I generally believe, that everyone involved in these painful situations makes the decisions that they do from the most honourable motives. I would also ask you to remember that anyone can make an honest mistake. Parents can harm their children when they intend them nothing but good. Doctors can be culpably slow to adopt effective, if unfamiliar, treatments but then apparent medical advances may turn out to be associated with severe and unexpected side-effects. Scientists forced to make decisions using incomplete evidence may profoundly disagree. Debates on the creation of the moon or the evolution of human ancestors will not engender the severe and understandable anxiety that results from medical disagreements.
For centuries there have been doctors’ organisations who see their role to be in controlling medical education and ensuring that practitioners behave ethically while using forms of treatment which, in the decision of their peers, are effective and as safe as possible. In the UK the General Medical Council and various Royal Colleges are among the groups that have this responsibility. These organisations are not medical trade unions (like the BMA) nor do they act as they do in order to inhibit medical advances. They certainly do not represent an unhealthy link with the pharmaceutical industry, although this is a widely held miss-perception. The public do need protection from members of all professions who are unable, or unwilling, to subscribe to generally held norms of behaviour and knowledge.
We cannot ignore the fact that modern medical care is very expensive. The very wealthy will be able to pay for their treatment directly but health insurance or state funding is more common. Insurance companies and state medical plans, like the British NHS, will exercise some discrimination in selecting the forms of therapy and surgery that will be funded for individual patients. This is not because of a conspiracy between doctors, nor does it represent any wish to ‘take away’ the right of patients to seek the medical advice of practitioners whom they trust. It is possible to have procedures, like cosmetic surgery, which are perfectly ethical but yet are not funded by the NHS under most circumstances. Anti-cancer drugs, however expensive, that restored seriously ill people to full health and life-expectancy would be worth almost any conceivable price. The use of hugely expensive drugs that do not restore health, and extend life on average for a few months only, have to be considered very seriously when resources are limited. Naturally I accept that for the individuals concerned, and their families, those few months can nonetheless be very precious.
Brain tumours in children are treated with combinations of surgery, chemotherapy and radiotherapy. A disadvantage of radiotherapy is the damage it can do to normal tissues surrounding a tumour. A great deal of time and effort is taken to ensure that this associated harm is minimised, but long-term brain and nerve damage is still a potentially devastating consequence of treatment. Beams of protons are probably, but not certainly, equally destructive to brain tumours and it does seem that it is easier to minimise their damaging effects on non-diseased tissue. Proton beam treatment is currently given to certain eye tumours in the UK and two new units are planned to extend this form of therapy over the next few years. Already appropriate patients are sent abroad, usually to the US, to have proton beam treatment which turns out to be extremely expensive. The probability is that such treatment is effective but the more difficult question to resolve is whether, in individual cases with specific tumours, the prospects of reducing long-term neural damage is ‘worth’ the very considerable costs involved. I’m afraid that there are oncologists presently taking both views. Very naturally those who provide proton beam therapy are powerful advocates for its use, and the internet allows them to ‘market’ the treatment directly to the parents of children with brain tumours. Proponents of conventional radiotherapy strongly feel that no big trial of the two forms of treatment, provided to age and diagnosis matched patients, exists and consequently there is no definite evidence that the new treatment is as effective as the old or safer in the long-term. It is certainly possible for medical teams ethically to hold either view. Bodies, like the NHS, who fund such treatment have to form a judgement on this very difficult issue and have teams of experts to advise in this area.
There is no disputing that low levels of circulating hormones such as cortisone, thyroxine and oestrogen are the cause of disease states. The levels of such hormones have been detectable in blood tests which have been available for decades. The current debate comes over what population ‘normal levels’ for these hormones might be, and whether deficiency disease states might exist in the presence of blood hormone levels which are technically within the normal range. When given as drugs the three hormones involved represent very powerful agents with potentially serious side-effects. The orthodox view is that the hormones should not be used except in those with a definitely proven deficiency state but a large minority opinion, held seemingly by some highly charismatic physicians, is prepared to use them in disorders like chronic fatigue syndrome. I am not in touch with current medical literature but clearly a published trial of this type of treatment in a peer-reviewed journal would be a great help in decision making. As a possible source of personal bias I should say that I once knew a patient who was treated in this way. I felt very uncomfortable by the infrequency with which review appointments were provided and also the extraordinary status ascribed to the prescribing physician.
Are there any useful guidelines to follow in these very troubling situations? Adults who are capable of giving informed consent, or informed refusal, to any course of treatment must be allowed to make such a decision, even if it is widely perceived by others to be against their own interests. The unwillingness of an adult member of the Jehovah’s Witness Church to accept a blood transfusion is an example of this. The case of a child, or an adult physically or mentally unable to give informed consent, is different. Medical staff should be allowed, in an emergency situation, to take such actions as will preserve life but if the situation is less pressing it is open to the doctors to consult their own hospital ethics committee or rarely make the individual concerned a ward of court. However much they love their children parents do not always know best; their chances of reaching the correct decision are not aided if their child’s health care is drawn into the very painful fallout from a failed relationship. The information found on the internet is amazingly extensive but it is not always accurate. Those people who post on health related message boards are prone to generalize from their own individual experience and it is hard to make informed decisions on this type of anecdotal evidence. It is difficult for any expert to give full and unbiased advice on a complex therapeutic issue, and doubly difficult when the same expert has a financial interest in one type of treatment.
The public has the right to expect the highest standards from its medical staff. They must, of course, give parents simple but accurate accounts of the options available with supporting evidence. If their final recommendation differs from a widely held view within the profession then this should be made unmistakably clear. My final feeling is that for doctors to be their patients’ trusted friends is an extraordinary privilege. If they ever find themselves being elevated to what I can only call ‘persecuted sainthood’ this should promote the most rigorous self-examination of their own behaviour.