A healthy 31-year-old cycle courier is knocked down by a lorry. He survives, but is left in a coma. The doctors are convinced that he will remain in a persistent vegetative state for the rest of what could be a reasonably long life - if they keep his life-support machine switched on. His parents want him to be kept alive as long as possible; they never thought they would have to bury their only child.
But the son, despite his comatose state, has other ideas. Ever the forward planner and well aware of the risks of his job, he has completed a living will. Witnessed by his GP, this states that, in the event that, for whatever reason, he ends up unable to breathe on his own, he does not want to be put on a ventilator. Now that every inhalation and exhalation is orchestrated with electronic help, here's the dilemma: who decides whether he should live or die?
The answer to this theoretical yet increasingly plausible situation is simple: the son. Why? Because it is a basic human right to make your own decisions regarding medical care. The fact that this right extends to one's own death was often overlooked until recent high profile right-to-die cases such as that of Terri Schiavo illustrated the problems that arise when an individual has not made his or her wishes clear via a living will (also known as an advance directive).
It was reported this weekend that US attorneys have been inundated with inquiries from people who, spurred on by the Schiavo saga, want to include a living will in their estate plans. According to the Voluntary Euthanasia Society (VES), more than a million people in Britain already have living wills. This number looks set to increase if the mental capacity bill, which receives its final reading in the Commons next week, is passed. While living wills are already legally binding under common law, this legislation will recognise them under statutory law. In addition, it will put in place formal safeguards, such as the stipulation that they are valid only if signed and drawn up by someone with full mental capacity, and witnessed in writing.
Yet the extent to which many UK citizens are ignorant of their right to make such decisions was illustrated in a 2003 survey by the Making Decisions Alliance, a consortium of organisations set up to lobby the government to introduce mental capacity legislation. The research revealed that 92% of the population believed that although they had the right to be consulted about their loved one's care, they had no individual rights. In effect, they could turn off someone else's life-support machine, yet had no say in whether their own was kept plugged in.
The reality is the exact reverse. UK common law dictates that mentally competent adults have the right to decide how they want to be treated. In contrast, no relative, however close, has a right to make decisions on another family member's behalf. As the "baby Charlotte" case demonstrated, this is true even if the person receiving treatment is a child. Doctors are obliged to consult parents, but do not have to carry out their wishes.
This is clearly a contentious concept - after all, there can be few judgments in life more momentous than that to withhold or withdraw a medical procedure that sustains life - but if the person in question has prepared for this eventuality with a living will, there is nothing their families can do to contest it. (The same does not apply to organ donation, where relatives can override a would-be donor's wishes after death.)
Despite the controversy, many charities, from the Terrence Higgins Trust to Help the Aged, support the concept of living wills and even have downloadable templates on their websites. Julia Cream of the Alzheimer's Society says living wills are particularly important "now that people are being diagnosed earlier and are able to plan for the future".
They are also encouraged by the British Medical Association: "All patients' views should be listened to and given respect," says a BMA spokeswoman.
While the term "living will" has now entered the nation's conscience, there is still widespread misunderstanding as to what it actually means. Contrary to popular opinion, it has nothing to do with euthanasia (which is illegal). Neither is it a simple "add-on" to a normal will. The term was coined by human rights activist Luis Kutner in 1969 to describe a document in which a competent adult sets forth directions regarding medical treatment in the event of his or her future incapacitation. The document is a will in the sense that it spells out the person's directions. It is "living" because it takes effect before death. A competent adult can refuse treatment for any reason, rational or irrational, even if this might lead to their loss of life.
Some people wrongly see living wills as a way to expediate or facilitate death. This is perhaps because many voluntary euthanasia societies have been involved in developing the concept. Yet, as a spokesman for the VES points out, "living wills can also be used to specify that you emphatically do want to be given treatment". This type of living will is not yet legally binding because of the pressure it could potentially put on hospital resources, but it it hoped that the newly amended mental capacity bill will recognise them (albeit with safeguards).
Julia Cream emphasises that an advance directive of this kind can encompass even seemingly trivial issues. "It could mean asking to be given baths, not showers, or to be fed vegetarian food," she says.
More commonly, though, living wills are used to declare what a person is not prepared to endure, be it a limb amputation, blood transfusion or other life-prolonging treatments such as PEG feeding (the artificial feeding process that was keeping Terri Schiavo alive). According to Age Concern, which produces an in-depth fact-sheet for interested parties, the most common scenario in which a person draws up a living will is if they have been told that they have a terminal illness or form of dementia.
The most useful form for both patients and providers is a simple one-page document that sets out all necessary information in easily comprehensible language. In order for a living will to be valid, the author must have been over 18 and mentally com petent at the time it was prepared and signed. Ideally, it should also be witnessed by your doctor.
It is important, too, that living wills are specific in their instructions. There is little point in writing, "Please do not sustain my life if it no longer has any quality", as that is open to someone else's interpretation. With the speed of medical advances and the chance that you may change your mind, living wills should also be regularly updated and revised. Last, it is crucial that steps are taken to ensure that others, particularly friends and family, are aware of the existence of your living will. Otherwise, no one will know to consult it if things take a turn for the worse.
Four million people worldwide, including 250,000 in the UK, seem to think they have an answer - bracelets and talismans inscribed with medical details, acting as a conduit of information between patient and doctor/nurse/paramedic.
Everyone who signs up to the service with non-profit organisation MedicAlert, which costs from £19.95 for the jewellery and £20 a year membership, has their particulars entered into a database. The idea is that, should they be taken to hospital, staff will know to check for the emblem and act accordingly - whether it's a latex allergy or a "do not resuscitate" order.
"In the case of living wills or advance directives, the member's emblem would indicate the existence of such a document and the emergency line would be able to fax a copy to those attending," says MedicAlert's Niamh Murphy. "Our purpose is not to tell the medical staff what to do, but to notify them that there is additional information about their patient that may be of use to them."
How differently things might have turned out if Terri Schiavo had snapped up a bangle before she slipped into her coma 15 years ago. It wouldn't have been her husband who decided her fate, nor her parents or even George Bush, but Terri herself.
Making Decisions Alliance: www.makingdecisions.org.uk.
Download a living will from www.livingwill.org.uk
MedicAlert: www.medicalert.org.uk
