Handiphobia. Leading Cause of Euthanasia. Interview With Neonatologist Carlo Bellieni
SIENA, Italy, MAY 6, 2005 (Zenit.org).- The desire to do away with personal suffering is one of the driving forces behind euthanasia, an attitude described as "handiphobia," says an Italian neonatologist.
In this interview with ZENIT, Dr. Carlo Bellieni, of the Le Scotte Polyclinic of Sienna, talks about the phobia of handicap and the real reasons for incidences of euthanasia.
Q: The Groningen declaration (an agreement between the Dutch judicial authorities and Groningen's university clinic that authorized euthanasia in children under 12 without their consent) brought back to the center the problem of euthanasia in regard to newborns. How does a doctor of neonatology feel about such a possibility?
Bellieni: The first incredulity lies in the fact that today we have available in the area of neonatology analgesic drugs of such strength that to think that recourse is taken to euthanasia in cases of unacceptable pain is really anachronistic. The problem is that analgesic drugs must be used, but there are still resistances.
Q: But suffering is not only pain but also psychic distress.
Bellieni: Indeed! But while one can speak of suffering in an adult when faced with an ill-fated prognosis, this reasoning doesn't apply in the case of a newborn: It is obvious that suffering about one's future is not posed in the case of someone who is unable to reason about himself, or understand data, ideas and symbols.
Q: However, in time, once the neonatal age is passed, the pain and suffering of a child can manifest themselves.
Bellieni: Yes, but this will never make the state "not human," or "not worth living." We have testimonies of gravely ill patients who are more serene than certain "healthy ones." Suffering exists and it is a challenge, but not a "black hole" of meaningless tragedy.
Q: What is being said, then, about the suffering of someone for whom the cure proposed is euthanasia?
Bellieni: Perhaps something is being said about our own suffering. Why discuss the possibility of euthanasia with parents? ("It is vital to have an exact prognosis and discuss it with the parents," writes Verhagen in connection with the Groningen protocol). To involve the parents means that we are not on a path encased in certainties, but still subject to human passions, doubts and uncertainties.
That is why I say that euthanasia does not respond to the suffering of the patient, but of the one who decides. And it is really tragic. Instead, the point is to understand that it is in this area that our responsibility is at stake: To help to face or to run away from the problem.
Suffering must be addressed, supported; it is not resolved by running away; it's not even resolved by death. Yet consider how liberating and positive it is, also therapeutically, to understand the child's worth beyond the illness or malformation.
We know from scientific readings that the way a handicapped child is accepted depends very much on the character of the parents, but also on the human environment that surrounds him. Obviously, this does not mean the opposite evil, namely, that the doctor is the absolute arbiter of life; I would like to make it understood how much uncertainty is involved.
Q: Did Terri Schiavo's case cause apprehension?
Bellieni: Of course, but the problem remains identical. What suffering is being attended in a person who "does not feel anything?" It is apparently a contradiction! The fact is that it remains too much on the surface: a "state" is witnessed that we would not like to be in and by induction we think that it is a state that is impossible to live in. The fact is we have such a narrow idea of our life that we think that it is possible to be worth living only if it has certain characteristics.
Q: Then why is there pressure in favor of euthanasia?
Bellieni: I think this is explained well with the word "handiphobia." This is phobia toward handicaps, phobia of what is not under control, which impedes thinking with serenity of the handicapped. Perhaps we think of them out of compassion, but not as those who are essentially identical to those who are not handicapped.
It seems paradoxical, but imagined reality causes greater fear than true reality. How many families do we know who are terrified to have a child with serious paralysis, or serious mental retardation, and the moment this circumstance manifested itself, they understood something fundamental: their lives changed, but did not end! "Handiphobia" instead is fear of what we don't know how to control, calculate and measure, and as with all phobias, must be made to disappear.
Q: Are there more problematic areas?
Bellieni: Doubts about the certainty of the diagnosis, which is really arduous in the prenatal period.
J.M. Lorenz, of neonatology of Columbia University, evaluating the pros and cons of the efforts at resuscitation, wrote in the "Pediatrics" review in 2004: "The efforts to reduce the number of handicapped survivors through selective neonatal resuscitation lead to a diminution of handicapped survivors, but some children who would have survived without handicap will die."
In addition, there is the ethical doubt. According to an article in the "Journal of the American Medical Association," Peter Singer justifies infanticide on the basis of "total utility": "When the death of a handicapped child leads to the birth of another child with better prospects of a happy life, the total quantity of happiness will be greater if the handicapped child is killed."
Q: What solution is there in the case of a seriously brain-damaged child?
Bellieni: Not to leave him alone. Not to leave him or his family alone. The child needs his family, and his family needs support from the doctors and nurses, who must help to identify a path to therapy. And if a therapy is not possible that will give health back, there must at least be a way to understanding, to a rational addressing of the circumstance, so that the parents are not overwhelmed by feelings of guilt or impotence. And the participation of the community and the authorities should also be envisioned that opens all channels of support and facilities for the family.
To hear talk of euthanasia is not comforting to families who chose this path years ago! In any case, guidelines are needed to help distinguish between someone who is undoubtedly dying, and someone, instead, who is seriously damaged to the degree of running the risk of handicap, but not of death, and, finally, one who has, for the time being, only a serious risk of being so.