'Living Wills' and the Medical Profession: When Clinical Best Intentions Clash With Patient Intent

We live, we are told, in an age of independence, when individuals possess more ability to take control of their lives than any previous era in history.

We live, we are told, in an age of independence, when individuals possess more ability to take control of their lives than any previous era in history.

Knowledge and technology has empowered and enabled us to decide where and how we want to live. It has even given both the healthy and those living with serious illness and incapacity legal protection in determining how they want to die.

In England and Wales, such individuals have possessed the right to make what are known as 'Advance Decisions' - or, more commonly, 'living wills' - for the past five years, when the terms of the Mental Capacity Act 2005 came into force. The Act set out the elements needed to make such declarations legally valid, including having those intentions in writing, signed and witnessed. It meant that they had the power 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 development fed into a broader international movement of individuals who wanted to have a say about how they might be treated in the years to come. It included the US President, Barack Obama, who revealed in 2009 that both he and his wife, Michelle, had 'living wills'.

The issue of 'living wills' is also one of the central plotlines of The Descendants, starring George Clooney, which is among the contenders for the Best Picture Oscar to be decided in Los Angeles this Sunday. In the film, doctors turn off the life-support machine of Clooney's on screen wife, in accordance with wishes that she had set out in a living will before falling into an irreversible coma after sustaining head injuries in a boating accident.

The same piece of legislation which gave statutory weight to 'Advance Decisions' to the UK also allowed people to create documents called Lasting Powers of Attorney for Health and Welfare - or LPAs, for short - giving others the authority to make decisions about their health and welfare should they be unable to do so themselves in the future.

Such judgements could include accepting or refusing life-sustaining treatment.

Self-determination of such a sort has proved popular. Figures released recently revealed that the number of people in England and Wales taking out LPAs had increased to 170,000 in 2010-2011 - up 59% on the year before.

However, the clarity and dignity which they could bring to the end of someone's life is undermined by a central point: how do doctors required to provide life-saving care know whether patients have specifically refused treatment by making either an Advance Decision or having an LPA?

The problem arises because doctors have no simple way of telling which patients have made 'living wills' or LPAs because no comprehensive and easily-accessible database for either document currently exists.

There is a central register of LPAs because they are not valid unless registered with an organisation known as the Office of the Public Guardian (OPG). However, the only way clinicians or lawyers can currently find out whether an individual has an LPA and who their Power of Attorney or proxy might be is by making a postal application to the OPG. Those requests should take about 10 days to process, however the delays encountered by understaffing at the OPG mean that this can often take much longer.

The situation is even more complex in the case of patients making Advance Decisions as no central record of such 'living wills' existed, even though they too are legally-binding documents.

What that all means is that people who wish to refuse life-sustaining care in the event of becoming seriously ill could still be treated against their wishes because doctors might simply not know if a 'living will' or LPA exists.

There is a risk that, unless the situation is addressed, individuals might be dissuaded from taking out documents underlining their control of how they wanted to be cared for in the future. They might think there's no point in having them if there's a chance that they won't be taken notice of.

There is another risk, this time for clinicians. Last May, the medical regulator, the General Medical Council (GMC), issued guidelines making it a professional offence for a doctor to ignore the requests of patients with 'Advance Decisions' or LPAs, even if they believed those people's lives might be saved. Furthermore, any health professional knowingly providing treatment contrary to the terms of a valid 'Advance Decision' may be liable to a civil claim for damages for battery or even a criminal assault charge.

Medical staff are protected if they didn't know an 'Advance Decision' existed or doubted whether it was valid or applicable to the circumstances they were treating. That is one reason why many lawyers prefer LPAs because they transfer the ability to accept or refuse treatment to a nominee or Attorney.

The current confusion which exists, of course, can be removed by having a central record of 'living wills' which could be readily accessed by health staff, along with details of LPAs.

As we all taking more of an interest in what happens to us, particularly towards the end of our lives, such a database offers not only the dignity they deserve but a measure of protection for those medical practitioners who literally treat us with the best of intentions.

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