A recent survey shows Irish people want a say in their future medical care. Ali Bracken reports.
Who should make decisions about your future medical care if you become unable to do so?
At the moment, doctors in consultation with families make the call about the extent of medical treatment patients should receive if they become incoherent or are in a vegetative state.
A living will, or advance directive, sets out exactly what extent of medical treatment you wish to undergo in the future and can eliminate any ambiguity there might exist about your preferences in medical care.
Common features in advance directives are requests not to be kept alive in a vegetative state or resuscitated if brain damage has been confirmed or the person's standard of living will be greatly reduced.
Unlike many other European countries, there is no specific legislation regarding advance directives in Ireland but this doesn't seem to have stopped people getting them drawn up regardless.
Preliminary results from Ireland's first widescale survey examining how we feel about advance directives indicate that Irish people feel strongly about having a say in their future medical treatment.
Just under 400 people were asked a range of questions about how they feel about advance directives in a survey conducted by the Irish Council for Bioethics.
"Many people want to remain active participants in making important decisions about their own medical care and avoid the possibility of being over-treated or under-treated when they are no longer in a position to accept or decline such care," says Dr Siobhán O'Sullivan, scientific director of the council and leader of the project.
"Writing an advance directive can remove the burden of having to make difficult medical decisions from the shoulders of family members," according to O'Sullivan.
"Preparing an advance directive can foster communication between patients, their family and doctors and allows individuals to express their values and preferences regarding illness, medicine and dying. Illness is something which affects every family and in an ageing population the issue of advance directives is something we need to contemplate," she says.
While most people surveyed agreed that advance directives should at least be up for discussion, the survey also highlighted that opinion was divided as to whether they should be made legally binding and how specific or general they should be.
"There was a big split about how strictly advance directives should be adhered to. We can make decisions about our future medical care now but it's difficult to predict how we'll feel about them in 20 years' time," she says.
At present, it is up to the discretion of individual doctors as to whether they consider a patient's advance directive when deciding on treatment. But if a doctor is uncomfortable about following an advance directive, the patient's family can ask for a transfer to another doctor who is open to considering it.
While no legislation exists regarding advance directives, the Law Reform Commission recently examined the Power of Attorney Act with the view to extending its powers, which could lead to people having a legal say in their family members' medical care.
The report should be completed by the end of the year.
Advance directives in Ireland aren't as new a concept as people may think. A survey of 1,000 people on attitudes towards death and dying by the Irish Hospice Foundation in collaboration with TNS MRBI in 2004 found that 14 per cent of respondents had written up an advance directive.
"That struck us as very high and yes, we were very surprised," says Eugene Murray, chief executive of the Irish Hospice Foundation.
The same survey found that just 32 per cent of respondents had drawn up a will. Solicitor John Costello of Eugene F Collins Solicitors in Dublin says an increasing number of people are inquiring about advance directives when they come in to make a will.
Costello helps clients draw up directives that outline the circumstances when they do not wish to be kept alive and advises clients that they are not legally binding.
"About 5 per cent of people who come into me to draw up a will inquire about it," he says. "There's definitely an awareness out there. People don't want to be kept alive unnecessarily but it's still a controversial issue. I think there's more awareness because of a number of high-profile cases in the public domain."
The removal of Terri Schiavo's feeding tube in 2005 in the US was at the centre of a legal, political and religious battle that attracted worldwide attention. Schiavo was in a persistent vegetative state for 16 years.
Her husband and family disagreed over the removal of her feeding tube, which would result in her death. As Schiavo had not left an advance directive, it was unclear what medical care she would want. After several court appeals, Schiavo's feeding tube was removed and she died in March 2005 in the midst of a media circus.
"Advance directives are such a contentious issue. People are either very for it or very against it," says O'Sullivan. "But now we know that people at least want to discuss it. Now we just have to wait and see how this develops. The debate is only really beginning in Ireland."