BIOETHICS IN RADIOLOGY A BABY WITH CONGENITAL MALFORMATION Manguba - Matematico

CASE GC, is a 40-year old 10 weeks pregnant, who was seen by Dr. OB for prenatal consult. She was referred to a radiologist for an ultrasound examination. The ultrasonographer found a baby with anencephaly. He informed Dr. OB of the findings as soon as the patient finished the ultrasound. He said that the baby has a severe congenital malformation, and in the hospital where he was trained, termination of pregnancy is one of the options.

CASE He pointed out that it is a great psychological burden to the parents and to the mother who will carry the pregnancy for 9 months only to deliver a baby dying or dead. In short, he said “ a pregnancy without a purpose”. He added that the baby would serve a better purpose if it could be donated for stem cell research. The patient preparing to leave the ultrasound, overheard the conversation.

Ethical issues/problems of the case Abortion (terminating a “pregnancy without a purpose” on the grounds of giving birth to an anencephalic baby) Stem cell research and using fetus as potential source of the stem cell.

Definition Anencephaly is the most severe of fetal neural tube defects, resulting from failure of the neural tube to close at the base of the skull in the third or fourth week (day 26 to 28) after conception, leaving skull bones that usually surround the head unformed. A child with anencephaly is indeed born without a scalp, without a vault of the cranium, without meninges, without either brain hemisphere and cerebellum, but is usually born with part of its cerebral trunk, brainstem.

Definition An ultrasound scan can detect an anencephaly as early as the 10th week. However, an anencephaly cannot be picked up or ruled out by an ultrasound scan until the 16th week of the pregnancy. Further tests must be carried out (ultrasound scan, amniocentesis to check for AFP levels) to determine whether there really is a problem. Screening must take place between the 15th and the 20th week, the best time being the 16th week.

Statistics 7% died in utero 18% died during birth 26% lived between 1 and 60 minutes 27% lived between 1 and 24 hours 17% lived between 1 and 5 days 5% lived 6 or more days

Is it ethical to abort an anencephalic, 10 week old fetus?

Definition Abortion includes spontaneous (miscarriage) and deliberately procured (induced) termination of pregnancy with the resulting death of the human being at any stage of its development. Usually done 20-24wks AOG when fetus is believed to be non-viable

Abortion Direct induced with the purpose of destroying human fetus after contraception Indirect one in which the direct moral objective of the action (immediate intrinsic purpose of the procedure) is therapy for the mother, but in which the death of the fetus is a side effect that cannot be avoided Must be justified by: 1.act itself is directly for treatment of the mother’s pathology 2. the mother and physician would save the child if possible 3.death of child is not a means to treat the mother, only a side effect 4.proportionate reason for the procedure is to save the mother’s life

HUMAN PERSONHOOD Pro-Life (Anti- Abortion) Human personhood begins at conception. God injects a soul into the zygote at the instant of conception. Pro-Choice (Pro-Abortion) God injecting a soul into the zygote at the moment of conception is impossible Defective babies: no limbs, no head, no brain, no ability to see, hear, smell, taste, or touch, no ability to think and reason.

ETHICAL PRINCIPLES "I believe that each human life is of infinite value, and since infinity cannot be multiplied or divided, remaining implicit in its infinity, so too is all human life precious and worthy of protection, no matter how long or short it may be." -Alison Davis

Violated Ethical Principles Inviolability of Life/ Human Dignity – All human life from the moment of conception is sacred. All have a duty to affirm, respect, love, preserve, and defend it. Violation: harming/destroying life

Violated Ethical Principles “ The human being is to be respected and treated as a person from the moment of conception and therefore from that same moment his rights as a person must be recognized, among which in the first place is the inviolable right of every innocent human being to life”. Congregation of the Doctrine of the Faith

Violated Ethical Principles Respect for Person – A child is the fruit and sign of mutual self-giving of spouses united in the exclusive commitment of marriage, conceived through the conjugal act, carried in the womb, brought into the world as a NEW and UNIQUE person regardless of his features. Violation: disrespecting the person

Violated Ethical Principles “ From the time that the ovum is fertilized, a new life is begun which is neither that of the father nor of the mother, it is rather the life of a new human being with his own growth. It would never be made human if it were not human already.” Congregation of the Doctrine of the Faith, Declaration on Procured Abortion, nos (1974}

Violated Ethical Principles Stewardship – Man has dominion over God’s creations: himself, other creatures, and the environment. A dominion that is not absolute but relative, shared with the true owner that is God. Violation: harming/ destroying present or future creation of God

Violated Ethical Principles Beneficence and Nonmaleficence – First, do no harm. The physician should act in the best interest of the patient. – Violation: Physician wants to harm the unborn child Justice – Concerns the distribution of scarce health resources, and the decision of who gets the treatment

Violated Ethical Principles Truthfulness and Honesty – The patient deserves to know the whole truth about their illness and treatment. Autonomy – The patient has the right to choose their treatment

Violated Ethical Principles Double Effect – A foreseen evil may be allowed if the foreseen intended good effect is greater than and does not result from the evil effect.

Upheld Ethical Principle Growth through Suffering – Suffering is the greatest paradox of human life – Suffering, when endured with courage and united to the suffering of Christ, can and should be used to promote personal growth in both private and communal living – Suffering in this case refers to the mother’s carrying on with the pregnancy until term whilst having an anencephalic child in her womb.

Is it ethical to abort an anencephalic, 10 week old fetus?

THE ONLY OPTION Because intervention in the pregnancy of an anencephalic infant seems to result in direct killing of an innocent human being, the only suitable ethical procedure is to allow the pregnancy to go to full term, baptize the infant, and allow the parents to hold it before it dies. O’Rourke, K., ed. (2000) A Primer for Health Care Ethics, Second ed.Washington DC: Georgetown University Press.,

First, once the diagnosis of anencephaly has been made, the parents ought to be given the appropriate medical information to understand the diagnosis, the proposed care, "its risks, side- effects, consequences, and cost; and any reasonable and morally legitimate alternatives" in which to evaluate the situation L’Osservatore Romano, the newspaper of the Holy See, Vatican, “Anencephalic Infants and Their Care”, September 23, * As a healthcare provider the attending physician must be an advocate of life and it is important to explain to the patient that termination of pregnancy or abortion is never an option. Killing the baby no matter how imperfect or how likely that the baby would die after birth is immoral and the physician should just encourage the patient to carry the anencephalic baby to term and just let him die naturally.

Pastoral care personnel, with the assistance of a hospital's ethics committee, can be a supportive presence to both the family and medical community in confronting the complex emotions involved in caring for anencephalic infant. L’Osservatore Romano, the newspaper of the Holy See, Vatican, “Anencephalic Infants and Their Care”, September 23, It would also benefit the parents of the anencephalic baby if they would undergo psychological counseling/programs so that they would be assisted or they would be prepared for the emotional burden that will be brought about by the death of their newborn child.

Second, it is to be considered a serious violation of the rights of the infant in utero to induce delivery prior to viability. The Ethical and Religious Directives remind us that the directly intended termination of a pregnancy before viability constitutes a procured abortion and is never permitted. L’Osservatore Romano, the newspaper of the Holy See, Vatican, “Anencephalic Infants and Their Care”, September 23, 1998.

Third, even though the anencephalic infant often does not live beyond a few hours or days, he or she is still a member of the human family and must be assured "comfort care" such as warmth, air, sanitary conditions and bonding with the parents if they wish. Care for the dying anencephalic infant must be humane and dignified "A person may forgo extraordinary or disproportionate means of preserving life.” L’Osservatore Romano, the newspaper of the Holy See, Vatican, “Anencephalic Infants and Their Care”, September 23, 1998.