Читать книгу The Moral State We’re In - Julia Neuberger - Страница 9

The arguments against the projected changes include, firstly, the view that asking doctors and nurses actively to kill patients is wrong and creates the wrong value system for a healthcare service of any kind. It may be the case that healthcare professionals do not need to strive to keep patients alive, but that is very different from actively killing their patients. Secondly, that suicide itself is not wrong and that an elderly or very frail person committing suicide is not necessarily to be disapproved of if it is done by their own hand rather than by another’s. Acceptance of this view should lead to a change of perception which might allow people to realize they can do it for themselves, and even be helped by being given the means in particular circumstances, without having to ask someone else actually to kill them. Thirdly, a rider to all this is the need for us as a society to develop a system of advance directives, whereby people can make choices for themselves about whether they want to be treated if extremely ill or when they can no longer make decisions for ourselves.

Such a system is in place in the USA. The PSDA (Patient Self Determination Act), a piece of federal legislation, came into force in December 1991. This requires all healthcare institutions, HMOs and services in receipt of federal funds to ask patients the question upon admission or enrolment about whether they have any kind of proxy or advance directive for what is to happen to them in the way of healthcare decisions if they become incompetent. At the same time, there is legislation in most US states that covers either healthcare proxies or advance directives, recognizing them in law and therefore in a sense approving their use.

There has been, rightly, increasing pressure to have a universal system of advance directives in the UK. The UK government has finally signalled, after a ten-year campaign, that there will be legislation to enforce so-called living wills via the draft Mental Capacity Bill, published in June 2004. This would apply both to those nearing their deaths, such as those who are frail and elderly, and to those who are or might become incapable for other reasons, such as those with enduring mental health problems, so that they can consent in advance to the treatments they might choose to have, or decide not to have, if they were well enough to make a decision. Some of the American evidence suggests that two separate factors are at work here. The first is a genuine desire to see self-determination for the very old. People must take responsibility for themselves, and must be encouraged do so before incapacity sets in. The other factor, which is certainly echoed in the UK debates, is the vast cost of paying for healthcare of the very old. The general view is that everything that can be done for a patient must be done, and there is a corresponding fear of being sued if any stone is left unturned, or any intervention left untried. If people could be persuaded to use advance directives, or appoint agents, there might be less use of expensive resources by the very old and very sick.

The fear of litigation in the USA is real and is growing in the UK. Though actual litigation is less common than the fear of it might suggest, it does have a powerful effect on behaviour. In the USA it is that pressure that has led to an increasingly strong argument for individual patients to have their own advance directives. State statutes on treatment directives give physicians a guarantee of civil and criminal immunity if they withhold or withdraw life-sustaining treatment relying in good faith on a patient’s advance directive. So, the argument runs, encouraging the use of advance directives will lessen the chance of litigation, allow for real patient autonomy, and arguably save costs.

But, if we are to move to a system of advance directives, then, as a society, we have to think quite differently about our health and social care systems. For the first time, with the exception of palliative care and hospice services, we will have to give far greater thought to the question of suffering, for despite the success of the hospice movement, suffering is barely part of medical training in Britain. Public debate on these issues needs to be encouraged, and public standards established. The idea that patients could set out for themselves, perhaps on a standardised form, what they want to happen if they are too frail, or mentally incompetent, to make a decision, is an attractive one. It would take away from healthcare professionals the need always to make decisions ‘in the best interests’ of the person involved, since it is often hard to tell what those interests might be. And many people simply do not want, at the end of their days, someone striving officiously to keep them alive.

Yet the system is not yet established that would allow us, as standard practice, to make our views known to our GP or to the person acting on our behalf in the healthcare setting. It is remarkably good practice at present if GPs and healthcare professionals ask us our views and make a note of them for future use. A system of advance directives seems sensible, practical, and easy to organize once a decision has been reached about what questions should be asked. The courts already recognize living wills, but the new mental capacity legislation will enshrine the right to draw one up in law and make it possible to appoint a healthcare proxy, in exactly the same way appointing someone to look after one’s financial affairs. As well as enshrining the right to make a living will in law, the Bill creates a new criminal offence of neglect or ill treatment of a person who lacks mental capacity, but it met criticism early on from the Making Decisions Alliance, a grouping of charities including Age Concern and the Alzheimer’s Society, who argued that the provisions lacked teeth and did not give advocates a central role in representing those affected by mental incapacity. In June 2004, the numbers affected were some 700,000 with dementia, some 145,000 with severe and profound learning disabilities, and some 120,000 suffering from the long-term effects of severe brain injury, quite apart from those with episodic severe mental illness.

At this point, it might be worth returning to the story of the donkey, the dog, the cat and the cock–all of whom had outlived their usefulness to their owners. Evidence is mounting of the rationing of healthcare by age in the United Kingdom. Is this because the elderly are seen as being too old to be productive? Or simply that they are felt to have had their turn and are taking up resources that should be used for younger people? A King’s Fund study in 2001 found that three out of four senior managers believed that age discrimination existed in some form or other in services in their local area. Discrimination included policies restricting access to particular units or treatments, although age-related policies were thought to be on the decline.*