A PUBLIC information campaign is needed to inform people about end-of-life issues, including the nature of resuscitation in a hospital environment where people are very seriously ill, a leading figure in the hospice movement has said.
Mervyn Taylor, programme manager with the hospice-friendly hospitals programme of the Irish Hospice Foundation, was speaking in advance of a public consultation process on advance care directives – “living wills” – whereby people leave instructions on how they would like to be cared for if they are terminally ill.
There is currently no legal framework recognising such advance care directives and the Law Reform Commission will initiate a public consultation process on these issues next week.
Mr Taylor will deliver a paper next Tuesday at the Law Reform Commission’s fifth annual conference in Dublin – Bioethics: Advance Care Directives.
He will advocate a “process-based” approach to end-of-life care, which will address an approach to dealing with the wishes of those who are dying, and the development of communication skills among hospital staff.
He said the Irish Hospice Foundation favoured an “enabling framework” in law that should “not be particularly prescriptive” in relation to end-of-life and advance care directives.
“People expect preferences at various stages of their lives and people express those preferences. Very often, those preferences are not met,” he said.
“For example, the majority of people in the developed world clearly express a preference to die at home. But the vast majority don’t – they die in hospital.”
He added: “The expression of a preference does not guarantee that preference can be carried out.” He rejected a “dogmatic, simplistic” approach to guidelines or legislation in the area.
Mr Taylor said 14 per cent of people questioned in 2004 claimed to have drawn up a “living will”, but he said it was not clear if they were drawing a distinction between a normal, legal will and a will that expressed preferences for their care in the case of terminal illness.
“We have concern that when people use terms like ‘advance care directives’, they may not understand what they mean.”
Mr Taylor said there was no “hard data” but that the Hospice Foundation had heard of cases where people had said they did not wish to be resuscitated in a hospital environment, but this was done anyway.
He said that family members may not be aware of the nature of a resuscitation process in a hospital environment.
Mr Taylor said a programme of public education was needed to examine such issues.
Other speakers at the conference include Minister of State at the Department of Health, Máire Hoctor, Prof David Smith of the Irish Council for Bioethics and associate professor of healthcare ethics at the Royal College of Surgeons. Dr Dominic Ó Brannagáin, consultant physician in palliative medicine at Our Lady of Lourdes Hospital Drogheda will provide a medical perspective