PATIENTS FACING the possibility of losing the capacity to make decisions about their treatment should be afforded the opportunity for advance decision making, according to a legal expert.
Dr Mary Donnelly, of the faculty of law at University College Cork, who has been involved in the drawing up of an ethical framework for the Irish Hospice Foundation, said most countries now had in place legal mechanisms to allow patients with capacity to make decisions about their end-of-life care which will apply if they become incapable.
Ireland, despite calls by the Irish Council for Bioethics and the Law Reform Commission, does not have such legislation in place which allows “patients’ voices to continue to be heard even as they become less audible”, she said.
Dr Donnelly, who was speaking at a seminar in Cork yesterday to launch the foundation’s Ethical Framework for End-of-Life Care, said introducing advance decision-making allowed patients a degree of control over their lives and deaths that was an important comfort to many.
Mental capacity legislation in England and Wales required that assessments of the best interests of people lacking capacity must take account of the person’s past and present wishes and feelings, said Dr Donnelly. It also required that such assessments must take into account the beliefs and values that would be likely to influence the person’s decision if he or she had capacity and other factors that he or she would be likely to consider if able to do so.
The legislation also imposes an obligation on medical staff to consult with family members in order to assist in establishing what the person’s past and present wishes might be, said Dr Donnelly.
“Hopefully, this approach will also be a feature of the Mental Capacity Act in Ireland, the scheme for which was published in 2008. If it is, it will establish a legal, as well as an ethical obligation to find ways to listen to the voices of patients who lack capacity.”
The seminar heard from Dr Joan McCarthy who was also involved in the development of the ethical framework – a collaboration between the foundation, UCC and the Royal College of Surgeons of Ireland.
Dr McCarthy, of the school of nursing and midwifery at UCC, said the framework purposefully sought out the grey areas where dying patients, distressed relatives, doctors and nurses faced moral and ethical challenges on a daily basis.
Irish research had found that 82 per cent of respondents in a sample survey said that if they were seriously ill with no hope of recovery, the quality of their life would be more important to them than how long it lasted, she said.
The same survey found that 72 per cent of respondents said they feared being helpless and dependent more than they feared death, Dr McCarthy said. The seminar was attended by about 150 people involved in end-of-life care.
Foundation chief executive Eugene Murray said expert pain control was often denied to patients because of where they lived. Ireland would not be able to say it was providing appropriate care for the dying until there was a consistent level of hospice care.
“We know that most people – 67 per cent – would like to spend their final months and days at home surrounded by their family and loved ones. But we also know that in 13 counties without access to any hospice inpatient units, 70 per cent of people die in hospital.
“That compares to places which have comprehensive palliative care services like Limerick where 70 per cent die at home or in a hospice,” Mr Murray said. The ethical framework was aimed at health professionals, patients, families and the public, he added.
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