Family must decide in right-to-die cases

JEREMY BENTHAM a 19th century political philosopher, said "publicity is the soul of justice"

JEREMY BENTHAM a 19th century political philosopher, said "publicity is the soul of justice". The recent Irish Times article from the mother of the woman in the "right to die" case is a tragic saga of persistent non communication from medical professionals caring for their relative.

This mother and the immediate family met a persistent refusal toe acknowledge the family's primary legal and moral authority in decisions about their loved one.

The mother writes of her daughter, who was left severely brain damaged following a minor diagnostic procedure under anaesthetic. Within two years of this accident the clinical diagnosis and prognosis for the patient was almost certainly agreed. She had suffered severe brain damage and would, in all probability, never recover cognitive functioning, never be able to move voluntarily, would never be able to communicate by choice.

The family had tried to secure a voice in decisions and they met deafness and determined non communication. The family wanted life support therapies to be ended some years ago when the prognosis became very clear.

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But they were baffled and angered by the marginalisation they experienced as many decisions were taken unilaterally and without consultation. They tried to ask why resuscitate her on numerous occasions when all bodily evidence indicated she was trying to die? Why reinsert an abdominal feeding tube under anaesthetic as recently as six months ago when their daughter had been in this "near persistent vegetative state" for 22 years?

Why not provide the best of pain relief care (if she knew pain) and allow her dying to proceed naturally? They tried to ask most clearly why are we being ignored? They were never answered.

The spirit of human life was ignored. Life support systems are not morally required if they are ineffective in supporting human, or bringing about functioning, life. The tradition of the Catholic Church puts this clearly from as far back as the 16th century.

Likewise, the Declaration on Euthanasia of 1980 from the Vatican explains that a decision not to use medical treatments "is" not the equivalent of suicide on the contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results that can be expected".

It is clear the authority of medical persons to make decisions specifically about the prolongation of life of a patient comes from the patient first. Secondly, if the patient is not competent, it is the relatives or family who are authorised as decision makers and they give any authority to doctors. The authority of doctors regarding such life prolonging decisions is conferred and derived authority patients and family are primary deciders (1957 Papal Allocution).

Some will reject my view and say that I am questioning the medical expertise of doctors and, nurses who, know what medical care requires and who are trained to make such medical decisions. That is their job. But the moral exercise of this expertise requires, rather than resists, consultation and communication in an on going way with the patients and/ or families.

The Medical Council of Ireland, in its own 1994 ethical guidelines, makes explicit that information sought by a patient or family (with consent of patient) should always be met positively.

The clinical decisions taken about the daughter at the centre of the Supreme Court judgment were not solely medical decisions. It is a serious mistake to think they were They, were profoundly important and ethical decisions about how long to use technology to prolong life and when to allow a person to die.

The medical personnel are not sole arbiters of ethical matters where values of patient and family are at variance. In this situation, the woman could not give her consent and yet in cases of non competence, coma or other disability not permitting communication from patient, the normal legal and ethical presumption is that the immediate family is proxy.

Medical defence unions around the world are aware of the centrality of communication. They consistently urge their members to take communication more seriously.

If an on going communication had been the experience of the family who buried their daughter last September, it is almost certain that this case would not have come to the courts. If the rightful authority had been given the family to be involved in ethical/clinical decisions about life prolonging treatment, a senseless regime of frustrating natural dying would not have continued for over 20 years.

What were the health care goals for this patient and why were they not discussed with the family? What was the objective of such aggressive life support measures? What moral imperatives were guiding these decisions? And why were the moral views of the family ignored?

The responsibility for the case occurring at all must be placed with health care institutions and professionals over many years. An apology for failure to respect the family's authority is still in order.