International Congress examines
end-of-life issues

From March 17 - 20 the International Federation of Catholic Medical Associations and the Pontifical Academy for Life hosted the International Congress on "Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas" in Rome at the Augustinianum University. I represented the Euthanasia Prevention Coalition to receive the most up-to-date information concerning the scientific advances and to be part of the debate over the provision of food and fluids for people in a vegetative state.

On March 16, Bishop Elio Sgreccia, vice president of the Pontifical Council for Life and Dr. Gian Luigi Gigli, president of the International Federation of Catholic Medical Associations, held a news conference concerning the questions to be dealt with at the congress. Bishop Sgreccia stated that: "feeding and hydration is essential to vegetative patients ... it is a duty that is both ethically and medically necessary." Gigli stated that: "these patients should not be treated as terminal. That as many as 43 per cent of vegetative patients are misdiagnosed, and, in some cases have recovered after being unconscious for years." He also stated that: "nutrition and hydration are not a form of treatment, and they are not disproportionate means," but "care that is due to patients."

Fr. Kevin O'Rourke, who was not present at the congress but who strongly supports the withholding of food and fluids, told the National Catholic Reporter that Bishop Sgreccia was "presenting a private theological opinion as Catholic teaching." and that the "magisterium has never maintained that prolonging the life of a patient in PVS is beneficial to the patient."

On the first day of the Congress the lines of contention were drawn after Professor Eugene Diamond, and moral theologians Fr. Gonzalo Miranda and Fr. Kevin McMahon explained in clear terms the definitions of therapy, the terminology surrounding euthanasia, and the questions concerning nutrition and hydration. Each presenter concluded that food and fluids are not medical treatment but rather normal care that is due all persons. That food and fluids are mandatory, unless their provision causes a great physical burden or risk to the patient receiving the care and not providing food and fluids to people in a vegetative state who are not otherwise dying is the same as euthanasia.

Fr. Norman Ford of the Chisholm Centre for Health Ethics in Melbourne and Fr. Gerald Gleeson of the Catholic Institute of Sydney Australia took issue with the definitions and conclusions. Fr. Ford stated that: "the patient should not be subjected to the ontological indignity of being sustained by medically assisted nutrition and hydration for years of unconscious life. He claimed this shows a lack of respect for them.

Bishop Anthony Fisher of Australia took issue with those comments. He stated: "If continuing to live is unworthy of human dignity with patients incapable of recovery, then why spoon-feed an incapacitated person? Why bother covering them up to avoid cold?"

After continued debate, the controversy resumed the next day. Fr. Ford continued to promote his support for dehydrating cognitively disabled people while Margaret Tighe, president of Australia Right to Life explained the implications of the Australian BMV case and accused several Catholic ethicists, doctors and priests of causing confusion by publicly supporting the dehydration death of BMV.

The third day of the congress primarily focused on the scientific advances and new medical therapies for people in a vegetative state. The morning sessions focused on people with brain injuries. As a participant in the congress who was primarily concerning with the ethical dilemmas, I was impressed with the new research findings and improved care for people with brain injuries. I was disappointed with the attitudes towards people with brain injuries. Several of the presentations stated hypothetical cases such as this one: after 12 months of intensive medical therapy a person who does not emerge from a vegetative state will likely never re-awaken. Many of the medical presentations concluded that if it could be ascertained that the person would not have wanted to continue living in this condition, or if the family approved, that it was acceptable to remove all food and fluids and allow the person to die of dehydration.

A dilemma exists with presenters who told us about the great advances in science and medical treatment for people with head injuries who at the same time were willing to dehydrate the patient to death if the family or previously expressed wishes of the patient would support this action. It seemed to me that this was an oxymoron. They are able to do more than ever before and yet they are also willing to dehydrate these people to death if their techniques fail. This dilemma was present in the address by Dr. Helen Gill a researcher from London England who explained that up to 43 per cent of all persons diagnosed as vegetative state are in fact misdiagnosed. Gill concludes that due to a lack of expertise that many patients are not diagnosed properly and once improperly diagnosed, they are not given the proper medical therapy for them to improve.

Gill findings are important knowing that since the Bland case in 1993, dehydration legally occurs in Britain when a person is in a permanent vegetative state and a judge approves. Since 1993, 30 people in a vegetative state have been dehydrated to death. Therefore, if up to 43 per cent of people in a vegetative state are misdiagnosed, many people who are not in such a state are dehydrated.

Dr. Paul Walter Schönle, professor of Neurological Rehabilitation, University of Kanstanz (Germany) and Dr. Alan Shewmon, professor of Neurology and Pediatrics at UCLA explained in separate talks the problems with the definition of vegetative state.

Schönle explained that with the right testing and medical therapy that most patients in a vegetative state can emerge. He furthered his claims by stating that most people in a vegetative state don't actually fit the definition of vegetative state. He said that in his experience only 5 per cent of persons diagnosed as vegetative state actually are in a vegetative state.

Dr. Shewman analyzed the definition of vegetative state and concluded that the definition is wrong. He stated that since people who are diagnosed as vegetative state are assumed to have the symptoms associated with the condition, therefore many people are not offered medical therapy that will improve their condition. At the end of his address he showed a short video of a child born with only a brain stem who after several years of love and stimulation from his parents showed incredible signs of interaction and self-awareness.

On Friday afternoon Dr. Keith Andrews FRCP, director of the Institute of Complex Neuro-disability at the Royal Hospital for Neuro-disability in London, England, explained the process that has been implemented in the UK for court approval to remove food and fluids from people in a vegetative state. This was a controversial presentation. Andrews was involved with many of the 30 cases of dehydration in the UK since the Bland case in 1993. Andrews was questioned about his involvement in dehydrating people to death. He declared that he was not the one making the decision, he was simply following the rules that were in place. One participant stated that she thought that it would be far more compassionate to give people in a vegetative state an intentional overdose rather than to dehydrate them to death over 10 to 14 days.

What is particularly distressing about Andrews involvement in dehydrating to death people in a vegetative state is that he is one of the world's leading physicians in treating neuro-disability. He addressed the congress as a world renowned leader in his field and yet he involves himself in the intentional deaths of people in a vegetative state.

Another excellent address on Friday afternoon was delivered by Professor Joannes Lelkens from Maastricht, Netherlands. Lelkens spoke about euthanasia in the Netherlands, where euthanasia and assisted suicide are legal. He explained that in the Netherlands the definition of euthanasia is: "the administration of drugs with the explicit intention of ending the patient‚s life at the patient's explicit request." Therefore only acts that are voluntary and involve an act with the intention of killing the patient is considered euthanasia in the Netherlands.

The definition of euthanasia that the Euthanasia Prevention Coalition uses is: "an action or omission of an action which of itself or by intention causes death in order that all suffering may be eliminated." Therefore we recognize euthanasia to include an intentional act and an intentional omission of an act done to cause the death of a person.

Due to the strict definition of euthanasia in the Netherlands, there are thousands of euthanasia deaths each year that are not recorded as euthanasia. Lelkens explained that in 2002 there were 140,000 deaths of all causes in the Netherlands. 5460 deaths (3.9 per cent) were caused by sedating patients and then removing food and fluids them in order to cause their death. These 5460 euthanasia deaths are not counted among the official number of euthanasia deaths in the Netherlands. Lelkens explained that if the Netherlands were to record all euthanasia deaths that 10 per cent of all deaths would be caused by an intentional act or omission of an act to cause death, or euthanasia.

Lelkens clearly did not appreciate the fact that Dr. Lavrijsen from Nijmegen, Netherlands had displayed published cases of deaths of his patients whom he intentionally dehydrated to death. Dr. Lavrijsen was indignant that Lelkens was referring to withdrawal of food and fluids as euthanasia. In an intense exchange,Lavrijsen, asked Lelkens, "Are you accusing me of manslaughter?" Lelkens responded, "Yes it is manslaughter, there is no other way to define it."

On Saturday morning there was a lot of energy at the congress, probably due to the fact that we were about to have an audience with Pope John Paul II. The 400 congress participants went to meet the Pope for a noon appointment. We entered a beautiful hall and waited for the Pope. Due to his health condition it was very difficult to understand the Pope's address, leaving the participants unsure of his message. Participants who supported the withdrawal of food and fluids were convinced that the Pope did not comment on the issue in his address.

The final address of the congress was by Gigli and it was a powerful witness to the sanctity of human life ethic. Gigli had originally stated that he would not speak due to time, but after pressure from congress participants he agreed to give an abbreviated version of his presentation: "Permanent Vegetative State: Trojan's horse for the legalization of euthanasia?"

He stated that the removal of nutrition and hydration from people in a vegetative state who are not dying is done only to end their lives and is euthanasia. He stated that the removal of food and fluids to intentionally end a life is the trojan horse to active euthanasia. "After society rejected euthanasia under Nazism, we are now accepting euthanasia for freedom or compassion or pain or choice. I will fight this as long as I live and with all of my strength." Gigli continued, "If we open the door to nutrition and hydration removal, something else will come. It will make life a disposable good and life will be only a good based on its quality. If we accept this we will accept that there is a life not worthy of life. It will lead to the notion - wouldn't it be better, faster and more compassionate to give them an injection."