Chapter 9 :   Severely Impaired Newborns, Futility and Infanticide

Section 5. Decision Scenarios

Summary of Methodology for Analyzing and resolving Cases involving moral dilemmas in Health Care:

Methodology: http://depts.washington.edu/bioethx/tools/cesumm.html

Paradigm for the Method:  http://depts.washington.edu/bioethx/tools/4boxes.html

Sample Case Analysis: http://depts.washington.edu/bioethx/tools/cecase.html

Introduction to Clinical Ethics, 4th edition using the case of Dax Cowart.:

http://depts.washington.edu/bioethx/tools/ceintro.html

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SCENARIOS:

For each of the scenarios you should consider how a person would reach a decision if that person were using the basic principles from EACH of the following traditions:

  • EGOISM

  • UTILITARIANISM

  • NATURAL LAW THEORY

  • KANT's CATEGORICAL IMPERATIVE

  • RAWLS MAXI_MIN PRINCIPLE of JUSTICE as FAIRNESS

Scenarios for Decision Making

1. Epidermolysis bullosa and a neonate: parents request no treatment

2. Schilder's Disease and 17 year old: should Juli die?

3. Seriously deformed and lethal dose: infanticide

4. Hydrocephalus

5. Deformed conjoined twins

6. Severely Deformed: Infanticide

7. 25 week pregnancy- extremely premature neonate: infanticide

8. Spina Bifida and Hydrocephaly

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From:  Munson, Ronald. INTERVENTION AND REFLECTION.6th ED.,Belmont, California: Wadsworth Publishing Company,2000  Page 180, Decision Scenario #1

Jecker and Pagon, in a section omitted from the above reading, present the case of a newborn girl we’ll call Ginny Rutten.  Ginny was born with epidermolysis bullosa, a genetic disease involving the blistering and sloughing off of the skin and mucous membranes- the whole thickness, down to the fat and muscle.  Ginny cannot drink, because the lining of her mouth is blistered and swollen, and so can take no nourishment by mouth.  Areas of her skin have eroded, producing patches of raw flesh resembling third-degree burns.  Because of the breakdown of her skin, she suffers constant pain; also, the dehydration it permits produces electrolyte imbalances that put her at risk of heart arrhythmia and death.

                Ginny has a disease for which there is no cure and not even a treatment to prevent the blistering and peeling of her skin.  In addition to pain from the skin loss, those with the disease lose their fingers and suffer from a drawing up – contracture- of their arms and legs from scarring.  They need total care their entire lives.  Moreover, there is no case of a spontaneous cure or even a lengthy remission on record. 

                Ginny has a severe form of the disease and screams in pain when she is awake.  She is sedated by a morphine drip and sleeps in brief cycles.  Her physicians and the hospital ethics committee debate the question of whether to feed Ginny artificially, either by an IV drip or through a surgical opening into her stomach, and so keep her alive.  Her parents ask that no effort to prolong her life be made.

 

From:  Munson, Ronald. INTERVENTION AND REFLECTION.6th ED.,Belmont, California: Wadsworth Publishing Company,2000  ., Page 180, Decision Scenario #2

Brookhaven, as we will call it, is a long-term health-care institution in the Washington metropolitan area.  Most of Brookhaven’s patients are in residence there for only a few months; either they succumb to their ailments and die, or they recover sufficiently to return to their homes.

                But for some patients death has no immediate likelihood, nor is recovery a possibility.  They linger on a Brookhaven, day after day and year after year.  Juli Meyers is such a patient, although that is not really her name. 

                Juli is seventeen and has been in Brookhaven for six years.  But before Brookhaven there were other institutions.  In fact, Juli has spent most of her life in hospitals and special-care facilities.  But Juli does not seem to be aware of any of this.

                At Brookhaven she spends her days lying in a bed surrounded with barred metal panels.  The bars have been padded with foam rubber.  Although most of the time Juli is curled tightly in a fetal position, she sometimes flails around wildly and makes guttural sounds.  The padding keeps her from injuring herself.

                Juli’s body is thin and underdeveloped, with sticklike arms and legs.  She is blind and deaf and has no control over her bowels and bladder.  She is totally dependant on others to clean her and care for her.  She can swallow the food put into her mouth, but she cannot feed herself.  She makes no response to the people or events around her.

                There is no hope that Juli will walk or talk, laugh or cry, or even show the slightest sign of intelligence or awareness.  She is the victim of one of the forms of Schilder’s disease.  The nerve fibers that make up her central nervous system have mostly degenerated.  The cause of the degeneration is not fully known, nor is it known how to halt the process.  The condition is irreversible, and Juli will never be better than she is. 

                At birth Juli seemed perfectly normal and healthy, but at three months she began to lose her sight and hearing.  She made the gurgling noises typical of babies less and less frequently.  By the end of her first year, she made no sounds at all and was completely blind and deaf.  Also, she was losing control of her muscles, and her head lolled on her shoulders, like a doll with a broken neck.

                She became highly subject to infections, and more than once she had pneumonia.  Once when she was on the critical list, a specialist suggested to her mother that it would be pointless to continue treating her.  Even if she recovered from the pneumonia, she would remain hopelessly impaired.  Mrs. Meyers angrily rejected the suggestion and insisted that everything possible be done to save Juli’s life.

                Although not wealthy, the family bore the high cost of hospitalization and treatments.  Mrs. Meyers devoted herself almost totally to caring for Juli at home, and the other four children in the family received little of her attention.  Eventually, Mrs. Meyers began to suffer from severe depression, and when Juli was eight and a half her parents decided she would have to be placed in an institution.  Since than, Juli has changed little.  No one expects her to change.  Her mother visits her three times a month and brings Juli freshly laundered and iron clothes.

 

From:  Munson, Ronald. INTERVENTION AND REFLECTION.6th ED.,Belmont, California: Wadsworth Publishing Company,2000  ., Page 181 Decision Scenario #3

Susan Roth was looking forward to being a mother.  She had quit her secretarial job three months before her baby was due so she could spend the time getting everything ready.  Her husband, David, was equally enthusiastic, and they spent many hours happily speculating about the way things would be when their baby came.  It was their first child.

                “I hope they don’t mix her up with some other baby,” Mrs. Roth said to her husband after delivery.

                She didn’t know yet tat there was little chance of confusion.  The Roth infant was seriously deformed.  Her arms and legs had failed to develop, her skull was misshapen, and her face deformed.  Her large intestine emptied through her vagina, and she had no muscular control over her bladder.

                When she was told, Mrs. Roth said “We cannot let it live, for her sake and ours.”  On the day she left the hospital with the child, Mrs. Roth mixed a lethal dose of a tranquilizing drug with the baby’s formula and fed it to her.  The child died that evening.

                Mrs. Roth and her husband were charged with infanticide.  During the court proceedings, Mrs. Roth admitted to the killing but said she was satisfied she had done the right thing.  “I know I could not let my baby live like that, “ she said.  “If only she had been mentally abnormal, she would not have known her fate.  But she had a normal brain.  She would have known.  Placing her in an institution might have helped me, but it wouldn’t have helped her.

                The jury, after deliberating for two hours, found Mrs. Roth and her husband guilty of the charge.

 

From:  Munson, Ronald. INTERVENTION AND REFLECTION.6th ED.,Belmont, California: Wadsworth Publishing Company,2000  . Page 182 Scenario #4

I can’t believe God has done this to me, Mike Chovo said to himself. Tears came to his eyes, and his nose started running.

                His wife, Carol, handed him a tissue from the box by her bed. “It’s all right, Mikey,” she said. “We’ll make it all right.”

                Mike wiped his eyes and blew his nose. The yellow tissue struck him as being absurdly cheerful. Given the circumstances, it seemed totally out of place in the hospital room.

                “I know,” he said. “But it’s going to be so hard, so very hard. And it’s going to be terrible for Chris and Jan.”

                “They’ll adjust,” Carol said. “In some ways it will be good for them to have a brother like Terry. They’ll learn somebody doesn’t have to be perfect for you to love them.”

                “Oh, Jesus,” Mike said. “Maybe we should have told them not to do anything. He’s in such bad shape. The doctors told me they’re not sure he has enough of a brain even to learn who we are. I mean, it may be like he’s unconscious all of his life.”

                Mike pulled another tissue out of the box and held it over his eyes. He pressed hard with his fingertips. He wanted Terry to die, but he couldn’t tell Carol that. He could barely allow himself to think it. He wished he hadn’t given permission for the operation to drain the fluid from Terry’s head. But he couldn’t oppose Carol at a time like this.

                “But we’ll love him anyway,” Carol said. “We’ll take care of him until God calls him away.”

                “I wonder if we’re doing him a favor. I wonder if he’s really fit for this world.”

                “We couldn’t just stand by and let him die,” Carol said.

                “No, I guess we couldn’t.” Mike hesitated, then went on. “You know, this one operation won’t be the end of them. Dr. Flanners told me that it’s not usual to habe to operate ten or twelve times in cases like this.

                “It’s going to be expensive.”

                “That’s right, and I don’t know where we’re going to get the money.”

                “We can probably borrow some from my parents. And if we have to, I guess we can get a second mortgage on the house.”

                “I guess so,” Mike said.

                Carol looked at Mike and smiled at him. After a moment, he smiled back.

 

From:  Munson, Ronald. INTERVENTION AND REFLECTION.6th ED.,Belmont, California: Wadsworth Publishing Company,2000  . Page 183 Scenario #5

Irene Towers had been a nurse for almost twelve years; for the last three of those years she had worked in the Neonatal Unit of Halifax County Hospital. It was a job she loved. Even when infants were ill or required special medical or surgical treatment, she found the job of caring for them immensely rewarding. She knew that without her efforts many of the babies would simply die.

                Irene Towers was on duty the night that conjoined twins were born to Corrine Couchers and brought at once to the Neonatal Unit. Even Irene, with all her experience, was distressed to see them. The twin boys were joined at their midsections in a way that made it impossible to separate them surgically. Because of the positions of the single liver and the kidneys, not even one twin could be saved at the expense of the life of the other. Moreover, both children were severely deformed, with incompletely developed arms and legs and misshapen heads. As best as the neurologist could determine, both suffered severe brain damage.

                The father of the children was Dr. Harold Couchers. Dr. Couchers, a slightly built man in his early thirties, was a specialist in internal medicine with a private practice.

                Irene felt sorry for him the night the children were born. When he went into the room with the obstetrician to examine his sons, he had already been told what to expect. He showed no signs of grief as he stood over the slat-sided crib, but the corners of his mouth were drawn tight, and his face was almost unnaturally empty of expression. Most strange for a physician, Irene thought, he merely looked at the children and did not touch them. She was sure that in some obscure way he must be blaming himself for what had happened to them.

                Later that evening, Irene saw Dr. Couchers sitting in the small conference room at the end of the hall with Dr. Cara Rosen, Corrine Coucher’s obstetrician. They were talking earnestly and quietly when Irene passed the open door. Then, while she was looking over the assignment sheet at the nursing station, the two of them walked up. Dr. Rosen took a chart from the rack behind the desk and made a notation. After returning the chart, she shook hands with Dr. Couchers, and he left.

                It was not until the end of her shift that Irene read the chart; Dr. Rosen’s note said that the twin boys were to be given neither food nor water. At first Irene couldn’t believe the order. But when she asked her supervisor, she was told that the supervisor had telephoned Dr. Rosen and that the obstetrician had confirmed the order.

                Irene said nothing to the supervisor or to anyone else, but she made her own decision. She believed it was wrong to let the children die, particularly in such a horrible way. They deserved every chance to fight for their lives, and she was going to help them the way she had helped hundreds of other babies in the unit.

                For the next week and a half, Irene saw to it that the children were given water and fed the standard formula. She did it all herself, on her own initiative. Although some of the other nurses on the floor saw what she was doing, none of them said anything to her. One even smiled and nodded to her when she saw Irene feeding the children.

                Apparently someone else also disapproved of the order to let the twins die. Thirteen days after their birth, an investigator from the state Family Welfare Agency appeared in the neonatal ward. The rumor was that his visit had been prompted by an anonymous telephone call.

                Late in the afternoon of the day of that visit, the deformed twins were made temporary wards of the Agency, and the orders on the chart were changed-the twins were now to be given food and water. On the next day, the county prosecutor’s office announced publicly that it would conduct an investigation of the situation and decided whether criminal charges should be brought against Dr. Couchers or members of the hospital staff.

                Irene was sure that she had done the right thing. Nevertheless, she was glad to be relieved of the responsibility.

 

From:  Munson, Ronald. INTERVENTION AND REFLECTION.6th ED.,Belmont, California: Wadsworth Publishing Company,2000  . Page 184 Scenario #6

Dr. Daniel McKay and his wife, Carol, had only a few moment of joy at the birth of his son. They learned almost immediately that their child was severely impaired. Half an hour later, the infant was dead-Dr. McKay, a veterinarian, had slammed him onto the floor of the delivery room.

                Mrs. McKay had had problems during pregnancy. An ultrasound test indicated excessive fluid in the uterus, a sign that something might be wrong. Dr. Joaquin Ramos assured the McKays that everything was all right and that the pregnancy should continue. On June 27, 1983, he ordered Mrs. McKay admitted to the Markham, Illinois, hospital so that labor could be induced.

                “Don’t do any heroic measures,” Dr. McKay told Dr. Ramos when Dr. McKay learned that the infant was impaired. Dr. Ramos explained that that was not his choice, for hospital policy required that everything possible be done for babies, even ones like the McKay baby that might not live more than a few months. The child had webbed fingers, heart and lung malfunctions, and missing testicles. It was suspected that the child also had a genetic disorder that might mean kidney malfunctions, mental retardation, and death within months.

                Dr. McKay smashed the infant’s head against the floor several times, splattering the wall and floor with brain tissue and blood. “Dan, what have you done?” a nurse shouted. Dr. McKay later said that while holding the child he asked himself “Can I accept and love this child, or would it be better off dead?” He had just talked to his wife. “I said to Dan, ‘Is it a boy or a girl?’ He said it was a little boy. I said, ‘Oh, Dan, we got our boy!’ Dan really wasn’t saying anything. He had tears in his eyes.” She then realized that the baby was not crying and asked her husband to go see what was wrong.

                Dr. McKay was charged with murder. Two defense psychiatrists testified that he had been temporarily insane. Two others said that he had succumbed to stress. A prosecution psychiatrist said that he was legally sane but that “he made a decision that he had a moral imperative to do what he did.” The jury could not agree whether Dr. McKay was guilty, not guilty, guilty but not mentally ill, or not guilty by reason of insanity. A mistrial was declared, but another trial was scheduled.

                                                                                  

From:  Munson, Ronald. INTERVENTION AND REFLECTION.6th ED.,Belmont, California: Wadsworth Publishing Company,2000  . Page 185 Scenario #7

On February 8, 1984, Traci Messenger had an emergency caesarean section at the E.W. Sparrow Hospital in East Lansing, Michigan, and her son, Michael, was delivered after only a twenty-five week gestation period-fifteen weeks prematurely. Michael weighed 1 pound, 11 ounces; was very likely to have serious brain damage; and was given a 30 to 50 percent chance of survival.

                Before Traci Messenger’s surgery, Michael’s father, Dr. Gregory Messenger, a dermatologist on the staff of the hospital, had spoken with his wife’s physicians and requested that no extraordinary measure be taken to prolong the child’s life. However, after the child was born, the neonatologist, Dr. Padmoni Karna, insisted that the baby be given respiratory support and diagnostic tests.

                About an hour after Michael was delivered, Dr. Messenger went into the child’s room and asked the nurses to leave. He then disconnected the life-support system, setting off an alarm. The child died, and the hospital called the police. A short time later, the county prosecutor, Donald E. Martin, charged Dr. Messenger with manslaughter.

                Although in most states, including Michigan, allow parents to decide to withdraw life support from their ailing child, Mr. Martin said he had decided to prosecute because Dr. Messenger had not waited for the results of medical tests. “The father appeared to make a unilateral decision to end life for his infant son,” Mr. Martin said.

                Dr. Messenger’s attorney replied that Dr. Messenger had several warnings of severe medical problems during delivery and immediately after birth. Monitoring of the baby suggested that he was not receiving sufficient oxygen and would be severely brain damaged. Blood tests at birth indicated that the baby had a 14 percent level of oxygen, and as a physician testified at a preliminary hearing, five minutes at a less than 50 percent level is enough to damage the brain. “The parents made a decision when the outcome was so grim and the prognosis was so bad they indicated ‘we do not want this intervention.’ I think it was incumbent on hospital personnel to honor their directive, and they didn’t do that.”

                Dr. Karna said that she would have agreed to removing life support, given the blood-test results, but that Dr. Messenger had acted without consulting her.

 

From:  Munson, Ronald. INTERVENTION AND REFLECTION.6th ED.,Belmont, California: Wadsworth Publishing Company,2000  . Page 185 Scenario #8

                I had been working as a bioethics advisor at University Hospital for three months before I was called in to consult on a pediatrics case.  Br. Savano, the attending obstetrician, asked me to meet with him and Dr. Hinds, one of the staff surgeons, to talk with the father of a newborn girl. 

                I went to the consulting room with Dr. Hinds to Joel Blake.  From what Dr. Savano had already told me, I knew that Mr. Blake was in his early twenties and worked as clerk at a discount store called the Bargain Barn.  The Baby’s mother was Hilda Godgeburn, and she and Mr. Blake were not married. 

                Mr. Blake was very nervous.  He knew that the baby had been born just three hours or so before and that Ms. Godgeburn was in very good condition.  But Dr. Savano had not told him anything about the baby.

                “I’m sorry to have to tell you this,” Dr. Savano said.  “But the baby was born with severe defects.”

                “My God,” Blake said.  “What’s the matter?”  “It’s a condition called spina bifida,” Dr. Savano said.  “There’s a hole in the baby’s back just below the shoulder blades, and some of the nerves from the spine are protruding through it.  The baby will have little or no control over her legs, and she won’t be able to control her bladder of bowels.”  Br. Savano paused to see if Mr. Blake was understanding him.  “The legs and feet are also deformed to some extent because of the defective spinal nerves.”

                Mr. Blake was shaking his head, paying close attention but hardly able to accept what he was being told.

                “There’s one more thing,” Dr. Savano said.  “The spinal defect is making the head fill up with liquid from the spinal canal.  That’s putting pressure on the brain.  We can be sure that the brain is already damaged, but if the pressure continues the child will die.”

                “Is there anything that can be done?” Blake asked.  “Anything at all?”

                Dr. Savano nodded to Dr. Hinds.  “We can do a lot,” Dr. Hinds said.  “We can drain the fluid from the head, repair the opening in the spine, and later we can operate on the feet and legs.”

                “Then why aren’t you doing it?” Mr. Blake asked.  “Do I have to agree to it?  If I do, then I agree. Please go ahead.”

                “It’s not that simple,” Dr. Hinds.  “You see, we can perform surgery, but that won’t turn your baby into a normal child.  She will always be paralyzed and mentally retarded.  To what extent, we can’t say now.  Her bodily wastes will have to be drained to the outside by means of artificial devices that we’ll have to connect surgically.  There will have to be several operations, probably, to get the drain from her head to work properly.  A number of operations on her feet will be necessary.”

                “Oh, God,” Mr. Blake said.  “Hilda and I can’t take it.  We don’t have enough money for the operations.  And even if we did, we would have to spend the rest of our lives taking care of the child.”

                “The child could be put into a state institution, “ Dr. Hinds said.

                “That’s even worse,” Mr. Blake said.  “Just handling our problem to somebody else.  And what kind of life would she have?  A pitiful, miserable life.” 

                None of the rest of us said anything.  “You said she would die without the operation to drain her head,” Mr. Blake said.  “How long would that take?”

                “A few hours, perhaps,” Dr. Savano said.  “But we can’t be sure.  It may take several days, and conceivably she might not die at all.”

                “Oh, God,” Mr. Blake said again.  “I don’t want her to suffer.  Can she just be put to sleep painlessly?”

                Dr. Savano didn’t answer the question.  He seemed not even to hear it. “We’ll have to talk to Ms. Godgeburn also,” he said.  “ And before you make up your mind for good, I ant you to talk with the bioethics advisor.  You two discuss the matter, and the advisor will perhaps bring out some things you haven’t though about.  Dr. Hinds will leave you both together now.  Let me know when you’ve reached your final decision and we’ll talk again.”

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© Copyright Philip A. Pecorino 2002. All Rights reserved.

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