Family made what it felt was the most humane choice
THE article published recently in The Irish Times by Dr Noreen O'Carroll, associate lecturer in philosophy at the Milltown Institute of Theology and Philosophy, raises important issues.
Dr O'Carroll noted, correctly, that my mother (the mother of the ward of court) published her article anonymously. She questioned whether such anonymous articles "can really foster public debate" on such an important issue and noted that the public may "not be well served by publication of an anonymous article that puts the whole of the medical profession in the dock to be tried in this manner".
Furthermore, Dr O'Carroll noted that the individuals (doctors and institutions) in question "have no right of reply, and though nameless, have to endure trial by media".
In this regard it is important to remember that the ward of court case involving my sister was held in camera, and in his judgment Mr Justice Lynch ruled that, while the judgment of the case would be delivered in public, it would be done so in a "manner which preserves the anonymity of the parties, that is to say, the ward, the applicant and the members of the family, the witnesses and institution".
The application for anonymity was made by all parties including the legal representatives of my family, though the family was quite happy to have had the case heard publicly. In the same way as our family is bound by the anonymity ruling of the High Court and can only comment in the third person, the same pathway for comment is open to the relevant doctors and medical institution should they wish to use it.
The second aspect of my sister's case that Dr O'Carroll found so disturbing was the "assurance that the ward's eighty days of dying were more peaceful than the 23 years of so called living".
In support of her argument that this was unlikely, Dr O'Carroll quotes from the trial judge in the case of Brophy v the New England Sinai Hospital. In that judgment, the trial judge, quoting primarily from an expert witness's testimony, commented that death following the withdrawal of nutrition and hydration would involve terrible suffering for a variable length of time, ranging from five days to three weeks.
He further listed 13 separate effects of fluid withdrawal (dry mouth, cracked lips, swollen tongue, sunken eyes, hollow cheeks, nose bleeds etc).
HOWEVER, what Dr O'Carroll failed to note was that on appeal the findings of this trial judge were reversed and the appeal judgment found that "death by starvation would not be painful". Further appeal to the US Supreme Court was refused.
In the case of my sister, her last "eight days of dying" - to all who observed them and who had visited her frequently through the many long years of her illness - truly were more peaceful than the previous 23 years of so called living". While in hospital my sister had received regular twice daily treatments with both sedatives and analgesics. Following her transfer home all medication was discontinued. During the last eight days of her life she received sedation on 14 occasions.
Daily nursing care included bathing, toilet care, occasional suction and regular mouth, nose, lip and eye care to prevent the side effects of dehydration. Keeping her eyes, mouth, nose and lips moist, with the use of artificial tears and other oral care ensured that the side effects noted by Dr O'Carroll did not occur.
Finally, Dr O'Carroll quoted from a report on the Bland case by Mr Alexander McCall Smith, Reader in Lawat the University of Edinburgh. ,In his comments Mr McCall stated: "Death when artificial feeding is withdrawn will come only after 10 days or more of admittedly sedated starvation."
"Sedated starvation" is indeed an interesting term. The refusal of food and fluid is a common end stage for many chronic debilitating and terminal illnesses. In these circumstances, the goals of palliative care include the judicious use of sedation and other pharmacological agents to ease the dying process.
Nursing care includes that which was given to the ward of court as noted above. It is debatable whether "sedated starvation" resulting in a dignified and peaceful death over a short period of time is a less desirable option than the "sedated nutrition" of my sister's previous 23 years, with its associated indignities.
FIRST HAND experience of those involved in caring for family members following the withdrawal of nutrition and hydration may be of value in arriving at a conclusion as to the nature of this dying process.
In commenting after his death, the wife of Paul Brophy (mentioned above) stated: "I ask now, when did Paul stop being a person? Had he stopped being a person? He certainly stopped being Paul...
"I remember sitting by his bed asking, where are you, Paul? Are you in your body or out of your body? Are you in a tunnel between life and death? Do you have the door to eternity open and we are not letting you pass through?" Paul Brophy (as reported by Ahronheim and Gasner in the Lancet in February 1990) died peacefully with his wife at his side.
Similarly, the experience of the Cruzan family is of interest. Following the death of their daughter, Nancy, her father commented: "Nancy's death was as peaceful as possible." Furthermore, when commenting on the use of advance directives or "living wills", Joe Cruzan noted: "Here I am publicly promoting them, but personally I think they are ridiculous.
"I think it should be the other way round. I think the presumption should be that most people would not want to be in a vegetative state for 30 years and would want the whole thing stopped. The people who want to spend their last 30-40 years that way are the ones who should write it down."
Ahronheim and Gasner in their article emphasised the peacefulness of death following the withdrawal of tube feeding. They said the use of scare stories, such as those proposed in the original court hearing of Paul Brophy by persons opposed to such management, must be placed in context and the evidence upon which these scare stories are based revealed.
The experiences of all those associated with the death of my sister last September are further testimony to the humanity of such an approach in the small group of patients where medical care has nothing further to offer.