BREDA O’BRIEN, The Irish Times

Debate on advance care directives needs to be part of a wider review of end-of-life issues

JAMES HALL was a rich and arrogant Jungian analyst. In 1991, he suffered a devastating stroke which triggered locked-in syndrome, the condition which Cork woman Catherine O’Leary also has. It leaves an active mind trapped in a completely unresponsive body. Most of his colleagues believed he should be allowed to die.

Luckily for James Hall, two of his colleagues laboured to help him communicate. Hall was able to point out letters on a board using eye movements, although at a desperately slow pace.

His friends told him to spell out, “I want to live”, to convince sceptical colleagues who refused to believe he had any cognitive capacity. Yet when they began, the second letter he indicated was D, not W. Taking nearly an hour to do so, he spelt out: “I demand to live, asshole.”

The interesting thing is that Hall had an advance directive declaring that if he suffered devastating loss of physical capacity, he would not wish to live.

All changed utterly, however, when he was in the situation himself. He now lives at home with his wife, communicates using a computer, and has published three books.

So are advance care directives a bad idea? Not at all. They can be a valuable aid in determining a patient’s wishes, but as the Law Reform Commission’s (LRC) report, Bioethics: Advance Care Directives, pointed out this week, they cannot be taken as an absolute.

The LRC was also careful to point out that advance care directives are not euthanasia by the back door. Instead, they are an attempt to create a framework where people can have a meaningful input into their own care, even in situations where they no longer have the capacity to communicate on their own behalf.

It is generally recognised that a person has a right to refuse medical treatment, most especially when treatment would be burdensome, painful or uncertain of success.

However, the LRC report is not entirely without controversy.

When dealing with artificial nutrition and hydration, it suggests a distinction between the use of it when there is hope of recovery, and when there is not.

In short, it suggests it would be ethical to remove artificial nutrition if a situation were permanent.

In the Terri Schiavo case, her husband succeeded in having her feeding tube removed, claiming she would have wished it given her level of handicap after a heart attack. Her family disagreed vehemently.

Disability advocacy groups, such as Not Dead Yet, protested that Terri Schiavo was dehydrated until dead because of disability discrimination, that is, the refusal to believe that a severely handicapped person could have a meaningful life. Family and nurses who had cared for her for years were devastated by the means of her death. So issues around the removal of artificial nutrition and hydration are by no means as unambiguous as the report suggests.

Perhaps the greatest contribution that the LRC report makes is to suggest that discussion of advance care directives should take place within a far wider debate about end-of-life issues and communication with those who are ill and dying.

The ongoing End of Life Forum, set up by the Irish Hospice Foundation, is doing very valuable work in an area most of us don’t even wish to think about. Dr Maurice Manning, speaking at the inaugural meeting, said that we accept the need to teach young people about the facts of life, but what about the facts of death? It is a good question.

Does anyone sit with a dying person, waiting with empathy to read the cues that the person is ready to discuss impending death, explaining gently what is likely to happen, reassuring about pain levels, and liaising with family?

Or do people die in crowded wards with a television blaring, and other patients’ visitors chatting just beyond the curtain?

Or what about when someone is taken to AE in an ambulance? Will the people following in a car have a place to park? Will the porter know they are coming? Will there be a private place to talk to a doctor? If the person dies, who accompanies the family to the mortuary? Will the mortuary be suitable for people of different cultures?

Our doctors receive minimal training in how to deal with those who are dying, and their families. Communication is a process, not an event, and requires time and sensitivity.

It may be part of a medical culture where death is seen as failure. On the other hand, not everyone can cope with full and frank discussions of possible options, or even the reality that he or she is dying.

While most of us would like to die at home, three-quarters of us will die away from home. Again, the Irish Hospice Foundation is to the forefront of efforts to bring a hospice ethos to hospitals, that is, a holistic and integrated approach that aims to maximise the physical, emotional, social and spiritual wellbeing of the patient, and also reaches out to the bereaved and to carers.

As public meetings and workshops are ongoing, there is still a chance to contribute to the debate, in the hope that eventually everyone will have at least the possibility of a “good death”.

This article appears in the print edition of the Irish Times

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