Defective Infants C1

Ethical Issues on Withholding Medical Care from Defective Infants and Its Legal Implications Jacinto, Maria Theresa L. IIC-1

“... man (and whoever is entrusted with the task of taking care of his fellow man) has the right and duty in the case of serious illness to take the necessary treatment for the preservation of life and health...” --- POPE PIUS XII

Congenital Anomaly/Disorders • Any medical condition that is present at birth • does not imply or exclude a genetic cause • can be recognized before birth (prenatally), at birth, or many years later • can be a result of genetic abnormalities, the intrauterine environment, a mixture of both, or unknown factors.

Argument 1 Defective Infants are not Persons  Concept of Personhood- the capacity of self awareness and the capability of having the desire to continue existence as a subject of experiences and mental states.

Argument 2 Utilitarianism  proponent: John Stewart Mill  greatest benefit for the greatest number of people

Doctrine of Necessity  permits one to violate the criminal law when essential to prevent the occurrence of a greater evil

a. The Quality of the Defective Infant’s Life b. The suffering of others 1. Family members 2. Healthcare providers 3. Society

Argument 3 Duty to Prolong Life  refusal to permit treatment and condemn a child to die an agonized and painful death would constitute clear abuse

Argument 4 Sanctity of Life Standards  Vitalism- “when there is life, there is hope” - limited by the application of aggressive treatments even for those children who are deemed to be in the process of dying  all living creatures contain a spark of divine, are sacred, and should be so regarded.

Passive Euthanasia of Defective Newborn Infants: Legal Considerations

Who are accountable? • Parents’ Liability • Liability of Attending Physician • Liability of Nurses

Parental Liability  Homicide by omission - applicable when a person’s failure to discharge a legal duty to another person causes that person’s death

Liability of Attending Physician • duty to intervene directly • report the case to public or judicial authorities • Law of Contract • Traditional Tort Doctrine

Liability of Nurses • Though subordinate to the orders of a physician, her legal duty is not fulfilled merely by carrying out physician’s orders but requires an independent judgment and action, if protection of the patient requires it

PROXY CONSENT

Deciding For Others

KING KAY, Caroline Bernadette O. 2nd Year Subsection C1

INTRODUCTION • Informed consent is ethically and legally necessary for every medical treatment and research project • Summed up in three words: – information – understanding – freedom

INTRODUCTION • Principle of Autonomy – key in informed consent – becomes less important

• For patients not able to give informed consent but may require medical treatment – aged person in a coma – infant/children – fetus

PROXY CONSENT • One person gives consent for another for whom the first is morally responsible • One person who represents the interests of another by some legitimate title gives consent for the experiment in place of the subject because that subject is incompetent at that time to do so • VICARIOUS CONSENT not LEGAL PROXY

PROXY CONSENT • For ethical and legal use, two conditions must be present: – The patient or research subject cannot offer informed consent – The person offering the proxy consent must determine what the incompetent person would have decided if he/she were able to make the ethical decision

PROXY CONSENT • PRINCIPLE OF “BEST INTEREST” • Decision should be made in view of the GOOD OF THE INDIVIDUAL PATIENT, not the higher good of society, or a class good (manipulation) • Case of neonate with serious birth anomalies – “burden” – judging life to be worth preserving

PROXY CONSENT • The person given the right to make such a judgment for another should be one who: – knows the person well – loving concern for his/her well-being

• Presumed to have a legal and ethical right: – parents, spouse, or next of kin – physicians or ethical counselors

PROXY CONSENT • Presumption that a parent, spouse or next of kin will judge rightly → BOND OF LOVE – Affection for the child – Long-term relationship with the child – Legal obligation to care for the child

• Not absolute – does not seem to be in accord with the good of the patient – ethics committee or civil authorities – physicians, nurses, hospital administrators • ethical and legal obligation

DOCUMENTATION • Variations in family living arrangements and many parents in the workforce non-parent to accompany child for consultation • Parent REQUIRED to write a written consent by proxy – Name of custodial parent or legal guardian – Name of person to whom the parent’s legal authority to consent has been delegated – Relationship of that person to the child

• Doubts about caregiver’s capability defer health care until parental permission can be obtained

DOCUMENTATION • Legal right to delegate consent • Whom can the power to consent to health care for a child to be delegated • In what circumstances can the power to consent be delegated • Limitations on the right to delegate the power • Authorization of proxy consent verified and documented • When/How often does this information on proxy consent need to be updated

UNACCOMPANIED TRAVEL

• Children who travel without their parents or legal representatives sometimes require medical treatment for a minor injury or illness • Depending on the law implemented on that region, a child may not be able to obtain routine medical care without consent to such care by an authorized adult

CUSTODY AND CONSENT

• Parents who are married to each other have an equal right to consent to medical care for the children of that marriage, and the consent of only one parent is required • Parents who are separated or were never married, ordinarily the consent of only one parent is sufficient to proceed with routine medical treatment

CUSTODY AND CONSENT

• Joint legal custody may be relevant to coordinating medical care, because some joint custody agreements require that both parents may need to give consent and be informed about their child’s medical needs

DISAGREEMENTS • Physicians and parents sometimes disagree about which course of action constitutes the best interests for a child. This conflict may arise from several factors: – Parents may be poorly informed about a disease process and its treatment – Distrust the physician providing information

DISAGREEMENTS • Physicians oppose parental actions or decisions • The clinician must always report suspected child abuse or neglect to proper authorities, regardless of parental wishes • Possible harm to the child overrides the traditional physician virtues of trust and confidentiality • Proper evaluation also ensures a more unbiased opinion about the reality of abuse or neglect

EMERGENCIES • Child's life is in imminent danger & parent cannot be informed should be treated with bias toward preserving life and limb at all cost • Erring on the side of treatment rather than foregoing treatment is appropriate • Example: Trauma surgery for a child injured in an automobile crash in which the parents are also injured

DISCLOSURE OF INFORMATION TO CHILDREN • Children should be provided information that is presented in an age-appropriate manner to help them participate in decision-making • Parents sometimes hesitate to share information about a serious diagnosis • The physician should anticipate parental fears and concerns

DISCLOSURE OF INFORMATION TO CHILDREN • Reminding parents that the child will eventually learn about his or her condition • Being told by parents in an ageappropriate fashion earlier rather than later helps prevent accidental disclosure and helps prevent children from feeling that they cannot trust their parents or physician

CONFIDENTIALITY • Physicians should maintain the confidentiality of pediatric patients as they would any other patient • In cases that involve pediatric patients, the surrogate decision maker or guardian is the person to decide with whom the information may be shared • Adolescents can request confidentiality, even from parents or guardians, in specific cases, such as pregnancy or STDs

CONFIDENTIALITY • Exceptions –Physicians and other health care workers must report cases of suspected child abuse or neglect to child protective services agencies –Physicians might need to disclose health information to schools – only what is needed

REFUSAL OF MEDICAL INTERVENTION • Parental refusal to vaccinate a child is a special challenge • In this case, the gains and risks for the individual child need to be weighed, as well as the public health risk an unvaccinated child poses to other children

ETHICAL ISSUES • Therapeutic Research – reason for the proxy to allow risk in proportion to the good that might accrue to the incompetent individual

ETHICAL ISSUES • Non-therapeutic Experimentation – beneficial to others but does not benefit directly the subject of the research – children, the dying, fetuses and newborns as fitting subjects for research

ETHICAL ISSUES • Non-therapeutic Experimentation – Proponents → ethical due to opportunity to contribute to the common good, something they should desire – On the other hand, proxy should make a decision in accord with the subject’s best interests • benefits not evident • capacity to make a free choice about a free matter → no right to presume or say anything in behalf of the subject

ETHICAL ISSUES • We follow the more protective opinion • Two considerations: – PRINCIPLE OF HUMAN DIGNITY • No person can achieve fulfillment without sharing in the common good and contributing to it • Guardians have the responsibility for patients who cannot care for themselves

ETHICAL ISSUES • Two considerations: – Granting incapacitated people to minimal risk would open the way for an extensive interpretation • objectively serious risks might be considered minimal if the guardian is not aware • guardians should be an advocate, zealous of the ward’s rights, not ready to yield these rights for the sake of others who cannot act for themselves

PROXY CONSENT

Deciding For Others

KING KAY, Caroline Bernadette O. 2nd Year Subsection C1

Neonatal Conditions Eugene Lao

Two Kinds of Errors • Genetic Errors • Congenital Errors

Genetic Errors • The program of information that is encoded into the DNA may be abnormal-occurrence of mutation. • The defective gene may have been inherited, or it may be due to a mutation.

Congenital Errors • means only “present at birth” • genetic defects have results that are only present at birth, the term is misleading • this phrase is use to designate errors that result during the developmental process. • the impairment is not in the blueprint but results from the reading of the blueprint • the materials that constitute the child’s development are affected.

Factors that influence fetal development • • • • •

Radiation Drugs Chemicals Nutritional deficiencies Biological disease

• Genetic Counselling • Ultrasound • Newborn Screening

• Once the impaired child is born, the medical and moral problems are immediate

Down Syndrome • extra genetic material causes delays in the way a child develops • often leads to mental retardation • affects 1 in every 800 babies born. • symptoms vary widely from child to child. While some need a lot of medical attention, others lead very healthy and independent lives.

Case 1: Baby Doe • In Indiana, in 1982, a child, became known as baby doe, was born with down syndrome and esophageal atresia, the parents and the physicians of the infant decided against the surgery that was needed to open the esophagus and allow the baby to be fed. He courts upheld the decision, and after 6 days, baby doe died.

Case 2: Baby Owen Same as case above, but the mother refused the duodenal surgery in order for the baby to die because ÒIt wouldnÕt be fair to the other children to raise them with a mongoloid. It would take all of our time, and we wouldnÕt be able to give them the love and attention they need.ÓThe doctor was against the parents decision, and talked to the medical director. He was advised to just let the baby die. Òwhat sort of life would it be for the family when they had been pressured into accepting a child that they didnÕt want? It would turn a family into a cauldron of guilt, and resentment mixed in with love and concern. In this case, the lives of five normal people would be profoundly altered for the worse.ÓSaid the medical director. It took twelve days for baby Owen to die. Many nurses and physicians thought that it was wrong to just let the baby die though no actions were done since they were cautioned by the medical director that any act made to shorten the babyÕs life would constitute a criminal offense. Baby Owen died on the 12th day. The nurses and physicians were relieved since the sight of the baby is adding stress to them.

• can't be prevented; it can be detected before a child is born. • health problems that can go along with DS can be treated • there are many resources within communities to help kids and their families who are living with the condition.

• Today, many children with Down syndrome grow up going to school and enjoying many of the same activities as other kids their age. • A few go on to college. Many transition to semi-independent living. Still others continue to live at home but are able to hold jobs, thus finding their own success in the community.

Spina Bifida • A general term for birth defects that involve an opening in the spine • the spine of the child fails to fuse properly, and often the open vertebrae permit the membrane covering the spinal cord to protrude to the outside • The membrane sometimes form a bulging, thin sac that contains the spinal fluid and nerve tissue. • When nerve tissue is present, the condition is called myelomeningocele

Spina Bifida • Often treated surgically • the opening in the spine must be closed up • In severe cases, the sac is removed and the nerve tissue inside is placed within the canal • Normal skin is then grafted over the area. • Antibiotic treatment is necessary due to danger of infection.

Spina Bifida • Likely to require orthopedic operations to attempt to correct the deformities of the legs and feet that occur due to muscle weakness and lack of motor control due to nerve damage. Fractures are frequent. • A child born with spina bifida is always paralyzed to some extent. There is also a lack of bowel and bladder control. Surgery may be needed to help with these situations. It is often accompanied by hydrocephaly.

Hydrocephaly • means “ water on the brain” • When, for whatever reasons, the flow of fluid through the spinal canal is blocked, the cerebrospinal fluid produced within the brain cannot escape • Pressure buildup from the fluid can cause brain damage, and if it is not released the child will die.

Hydrocephaly • Surgically inserting a thin tube, or shunt, to drain the fluid from the skull to the heart or abdomen where it can be absorbed. • The operation can save the baby’s life but physical and mental damage is frequent • Placing the shunt and getting it to work properly are difficult tasks that may require many operations. If hydrocephaly accompanies spina bifida, it is treated first.

Anencephaly • means “ without brain” • a defect in the closure of the neural tube during fetal development • The neural tube is a narrow channel that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the embryo.

Anencephaly • occurs when the "cephalic" or head end of the neural tube fails to close, resulting in the absence of a major portion of the brain, skull, and scalp. • Infants with this disorder are born without a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating part of the brain) • Remaining brain tissue is often exposed--not covered by bone or skin.

Anencephaly • A baby born with anencephaly is usually blind, deaf, unconscious, and unable to feel pain • Although some individuals with anencephaly may be born with a rudimentary brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness • Reflex actions such as breathing and responses to sound or touch may occur.

Anencephaly • • • •

No cure or standard treatment for anencephaly Treatment is supportive Prognosis for babies born with anencephaly is extremely poor If the infant is not stillborn, then he or she will usually die within a few hours or days after birth.

Case 3: Baby K Baby K was born in 1993 in Falls Church, Virginia. She has anencephaly. Treatment is usually supportive and death comes within a few days or weeks from respiratory failure. Baby K was kept alive much longer because of her motherÕs insistence that the babyÕs periodic respiratory crisis be treated aggressively, including the use of mechanical ventilator to breathe for her. After several admissions for a month, the hospital went to the federal district court to seek a ruling that it would not violate any state or federal law by refusing to provide Baby K with additional treatment. Physicians held that additional treatment would be futile, and hospital ethics committee decided that withholding aggressive treatment would be legitimate.

Premature Infants • normal pregnancy lasts approximately forty weeks • infant born after only twenty-six weeks of growth or less typically fail to live • Those born in the weeks after that time have extremely low birth weights • Extremely premature infants are subject to cerebral hemorrhages that may lead to seizures, blindness, deafness, retardation, and a variety of disabilities

Premature Infants • A surge of recent medical technologies allow premature babies to continue their growth outside the mother’s utero with a greater chance of survival and normalcy

Case 4: Prematurity

When Jan Anderson went into labor, she was twenty-three weeks pregnant-seventeen weeks short of the normal forty week pregnancy. ÒThey told me I had a beautiful baby boy,Óshe said. But her son, Aaron, weighed only 750 grams, and when she finally saw him, he was in the neonatal intensive care unit (NICU). He was attached to a battery of monitors, IV lines, and respirator. ÒIt was pretty scary,ÓMs. Anderson, a single woman, told to a reporter. She twice asked AaronÕs physicians to turn off the ventilator but no one would even discuss the possibility with her. One physician even screamed at her, ÒWeÕre trying to save your child, not kill himÓ. Aaron spent four months in the hospital before Ms. Anderson was allowed to take him home. AaronÕs life was preserved but despite this, he was left with permanent disabilities. By age two, he was quadriplegic and virtually blind, had cerebral palsy, and was perhaps mentally impaired. Although Ms. Anderson loves Aaron, and takes care of him, she says that if she was given an opportunity, she would have discontinues her babyÕs life support when he was born.

Thank you!!!