Tuesday April 20, 2004

Report from the International Congress: “Life-Sustaining Treatments and Vegetative State”:

Scientific Advances and Ethical Dilemmas”

By Alex Schadenberg, – April 2004

Executive Director, Euthanasia Prevention Coalition

March 17 – 20, 2004 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. The Euthanasia Prevention Coalition sent Alex Schadenberg (myself) to represent the organization in order to receive the most up-to-date information concerning the scientific advances for people in vegetative state and to be part of the debate over the provision of nutrition and hydration.

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 to establish the positions of their respective organizations on the question of nutrition and hydration.

Bishop Sgreccia stated that: “feeding and hydration is essential to vegetative patients … it is a duty that is both ethically and medically necessary.

Dr. Gigli stated that: “these patients should not be treated as terminal. That as many as 43% of vegetative patients are misdiagnosed, and, in some cases have recovered after being unconscious for years.”

Dr. Gigli also stated that: “nutrition and hydration are not a form of treatment, and they are not disproportionate means. This is care that is due to patients.”

Fr. Kevin O’Rourke, who was not present at the congress but who supports the withholding of food and fluids from people in a vegetative state, commented to reporter, Arthur Jones of 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 (Wednesday, March 17) the lines of contention were drawn after Professor Eugene Diamond, and moral theologians Fr. Gonzalo Miranda, & Fr. Kevin McMahon explained in clear terms the definitions of therapy, the terminology surrounding euthanasia, and the questions concerning nutrition & hydration.

Professor Diamond , Fr. Miranda and Fr. McMahon each 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 by the presenters concerning nutrition & hydration.

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. This shows a lack of respect for them, stated Ford.

Several conference participants challenged Fr’s Ford & Gleeson while others agreed with them.

Auxilary Bishop Anthony Fisher of Australia 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?

A French physician challenged Fr. Ford by stating: “why dehydrate people to death over two weeks? If the aim is to end their life, why not be honest and simply put them to death by lethal injection?

Dr. Philip Good a palliative care physician from Newcastle Australia supported Fr’s Ford and Gleeson by stating that he believed that: “continuing nutrition & hydration will become known as causing suffering to people who are unable to recover.”

But the controversy didn’t end. On the second morning there were several presentations by participants on both sides of the nutrition & hydration debate in the Free Communications session.

Fr. Ford continued to develop and promote his support for dehydrating cognitively disabled people while Margaret Tighe, President of Australia’s national Right to Life group 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 (Friday) 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 particularly impressed with the new research findings and improved care. I was sadly disappointed with the attitudes towards people with brain injuries. Several of the presentations stated: since after 12 months of intensive medical therapy, that if the person did not emerge from a vegetative state that they likely would never re-awaken. At this point 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.

The dilemma for me existed with the 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 for these people than ever before and yet they are also willing to dehydrate them 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 as many as 43% of all persons in a vegetative state are misdiagnosed. Her research shows 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 to enable them to improve.

Dr. Gill emphasized the importance of her findings 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 cases of dehydration of people in vegetative state have occurred. Therefore, if up to 43% of people in a vegetative state are misdiagnosed, therefore potentially many people could intentionally die of dehydration from a misdiagnoses.

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.

Dr. Schönle explained that with the right testing and medical therapy that his research is proving that most patients in a vegetative state can emerge. He furthered his claims to explain that most people in a vegetative state don’t actually fit the definition of vegetative state. He claimed that in his experience only 5% of persons diagnosed as vegetative state actually fit the definition of vegetative state.

Dr. Shewman gave an analysis of the definition of vegetative state and concluded that the definition is wrong. He stated that because people who are diagnosed as vegetative state are assumed to have the symptoms associated with the condition, therefore many people are not offered the appropriate medical therapy. He concludes from his clinical experience that most people in vegetative state do not actually fit the definition. At the end of his presentation he showed us a short video of a child born with only a brain stem who after several years of love and stimulation from his parents was now showing 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 to get court approval to remove food and fluids from people in a vegetative state. This was a controversial presentation. Dr. Andrews was involved with many of the 30 cases of dehydration in the UK since the Bland case in 1993.

After Dr. Andrews finished his presentation he was questioned as to his involvement in dehydrating people in a vegetative state. 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 – 14 days.

What is particularly distressing about the involvement of Dr. Andrews in the dehydration of people in a vegetative state is that he is one of the best known physicians in treating neuro-disability. He presented at the congress as a world renowned leader in his field and yet he involves himself in the intentional deaths of his patients.

Another controversial presentation on Friday afternoon was delivered by Professor Joannes Lelkens from Maastricht Netherlands. Dr. Lelkens presentation was on the withdrawal of nutrition & hydration in the Netherlands, where euthanasia and assisted suicide are legal.

Dr. Lelkens 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 in the Netherlands, there are thousands of euthanasia deaths each year that are not counted as euthanasia. Dr. Lelkens explained that in 2002 there were 140,000 deaths of all causes in the Netherlands. 5460 deaths (3.9%) were caused by the removal of food and fluids from a person who has been sedated in order to cause their death. These 5460 euthanasia deaths are not counted among the official numbers of euthanasia deaths in the Netherlands.

Dr. Lelkens explained that if the Netherlands were to report all euthanasia deaths as euthanasia that 10% of all deaths would be caused by an intentional act or omission of an act to cause death, or euthanasia.

Dr. Lelkens was clear that he did not appreciate the fact that Dr. Lavrijsen from Nijmegen Netherlands had displayed published cases of deaths of his patients who he intentionally dehydrated to death, comparing them to patients who were not dehydrated to death. Dr. Lelkens explained that he never expected to have to face the promotion of euthanasia from his country at a congress that was co-sponsored by the Pontifical Academy for Life.

Dr. Lavrijsen was indignant that Dr. Lelkens was referring to withdrawal of nutrition and hydration as euthanasia. In an intense exchange, Dr. Lavrijsen, asked Dr. Lelkens publicly, “Are you accusing me of manslaughter?” Dr. 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 hope for a noon appointment. We entered a beautiful hall and waited for the Pope. Speakers and congress organizers sat in the front rows and had the opportunity to meet the Pope.

The Pope arrived and was warmly greeted. He then began his talk. Due to his health condition it was very difficult to understand his address, leaving the congress participants unsure of his message. Participants who supported the withdrawal of food and fluids from persons in a vegetative state were convinced that the Pope did not comment on the issue in his address.

In the afternoon we received an excellent presentation from Chris Borthwick of Australia on the limits of a prognostic definition of permanent vegetative state.

The final address of the congress was by Dr. Gigli. Dr. Gigli’s presentation was a powerful witness to the sanctity of human life ethic.

Dr. 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. Dr. Gigli’s address was titled: Permanent Vegetative State: Trojan’s horse for the legalization of euthanasia?

Dr. Gigli stated that the removal of nutrition and hydration from people in a vegetative state who are not otherwise dying is done only to end their lives and is in fact euthanasia. He stated that the removal of nutrition and hydration to intentionally end a life is the trojan horse to active euthanasia.

Dr. Gigli said, “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.” He 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’.”

After Dr. Gigli finished his presentation he was informed that the vatican newspaper had arrived and included the papal address from that afternoon.

Dr. Gigli read the address to us in italien from the vatican paper with simultaneous translation in english. It became apparent that the long battle was over, that the Pope had finally made a definitive statement on the issue

It was confirmed that the provision of assisted nutrition and hydration for a person in a vegetative state who is not otherwise dying is to be considered normal care and obligatory. As stated in the papal address: “Death by starvation or dehydration is, in fact, the only possible outcome as a result of their withdrawal. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission.”


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