'Living Wills' and the 'Right to Die'

20/08/2012 13:58 BST | Updated 20/10/2012 10:12 BST

Several months ago, I wrote about the lack of a central and easily accessible register of so-called 'living wills' (

The documents, which are also known as 'Advance Decisions', came into force five years ago and allow individuals to give notice of their intention to refuse treatment in specific future circumstances should they have lost the capacity to decide in the meantime.

The same piece of legislation which gave statutory weight to 'living wills' also allowed people to give others 'Lasting Power of Attorney' (LPA). Simply put, it means transferring the authority to make decisions on someone's behalf about their health and welfare, including accepting or refusing life-sustaining treatment.

Whilst it is possible but time-consuming to establish whether someone has an LPA, no register at all exists of 'living wills'. Anecdotal evidence from my own workload and that of my colleagues at Pannone and other law firms suggests that they are becoming more popular in the UK.

The lack of a database of 'living wills' is more than merely a statistical concern. As both 'living wills' and LPAs are legally-binding documents, clinicians might find themselves treating individuals who had expressly wished not to be saved with all the complications which might ensue.

Doctors caring for Tony Nicklinson have been put in no doubt as to his intentions. Mr Nicklinson was left paralysed and suffering from 'locked-in syndrome' after a catastrophic stroke while on a business trip to Athens in 2005.

Since then, he has vigorously campaigned for doctors to be allowed to end his life and suffering without risking prosecution. He is too severely disabled to commit suicide himself.

Last week, the High Court decided to reject his request ( and that of another man, known only as 'Martin', to be allowed to die.

Even though Lord Justice Toulson described both cases as "deeply moving", he said it was up to the UK parliament to decide whether it was time for assisted dying to be made legal.

Mr Nicklinson was left devastated. Others could not disguise their delight at the outlawing of "legalised killing", as it was described by the pro-life organisation SPUC.

Mr Nicklinson's tragic case echoes previous challenges to the law from individuals in similar circumstances. A decade ago, Diane Pretty succumbed to Motor Neurone Disease only a fortnight after the European Court of Human Rights denied her bid to 'right-to-die' demand.

They throw into sharp relief how people in cases similar to those two are 'locked-in' not only by virtue of their physical incapacity but by the inability to have others help them to die.

Although neither Mr Nicklinson or Mrs Pretty achieved their legal objectives, their cases have at least maintained a public debate about how we might all determine our medical futures in advance should we too be rendered unable to at some point.

Admissions by President Barack Obama and his wife, Michelle, that they have taken out 'living wills' have also played a part, as has the documents appearing as one plotline in the George Clooney movie 'The Descendants' which was this year nominated for an Oscar.

The system by which 'Advance decisions' and LPAs are administered may not be perfect from the point of the patient or the clinical practitioner but at least they amount to a legally-binding expression of will.

Problems exist in cases in which it is simply not known if a patient has either document. In these instances, the decision as to whether to treat or not rests with the doctor.

For those who expressly wish not to be given life-prolonging care, the only safeguard is to ensure that families made fully aware of their intentions via a 'living will' or LPA.

The High Court's judgement in the Tony Nicklinson case is not only a reminder as to the value of formally setting down how we would like to be treated - or not, as the case may be.

The ruling also puts politicians of all hues in the spotlight once again. It remains to be seen if they are keen to accept the challenge issued to them by Lord Justice Toulson and finally resolve whether seriously ill individuals can be helped to die or must live in physical torment.

It is a responsibility which no-one surely envies. For the family of Mr Nicklinson and the doctor who treat him and those like him, ministers cannot take up the task too soon.