Deciding for an Infant
Baby Boy W. was born after an emergency Cesarean section was performed on his mother, who died of a seizure just before the procedure.
Severe encephalopathy, or a diffuse disease of the brain, left him with mental retardation. After one month, he had non-reactive pupils, no gag reflex, could not swallow and was posturing with pain and gasping respirations of 5-13 breaths per minute. He was on a ventilator and had a feeding tube.
The boy’s maternal grandmother petitioned the court for the appointment of a temporary guardian with authority to make medical decisions. His deceased mother’s husband denied paternity and a default was entered against him in the guardianship proceeding as a result of his failure to respond to a court citation. The grandmother is seeking appointment as guardian and permission to withdraw the artificial life support.
The undisputed testimony of two physicians, one of whom was the director of the neonatal intensive care unit at the hospital for 15 years, revealed that Baby Boy W.’s condition was terminal and irreversible, and that the treatment being provided was an extraordinary burden to the baby. One of the physicians further testified that the treatments to keep the baby alive were painful.
The petitioner, a registered nurse who had worked in hospitals’ obstetrics-gynecology and pediatrics units, also gave undisputed testimony that, based upon her observations and experience, the baby was suffering. What was in the baby’s best interest? “I love him enough to let him go,” the nurse told the court.
The report of the court-appointed guardian ad litem recommended the immediate appointment of the petitioner as temporary guardian with full powers that would be granted to a permanent guardian, including the authority to withhold or withdraw life sustaining treatment.
The court granted the petition and appointed the grandmother as temporary guardian, with powers to make health care decisions, including withholding or withdrawal of life sustaining treatment. The boy died not too long afterward.
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Questions for Discussion
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Is the “best interest” standard appropriate when, in the case of an infant, person with mental retardation or person who never had capacity, substituted judgment cannot be achieved?
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Would a “reasonable person” standard be more appropriate under the circumstances? Why? Does it make sense to apply a “reasonableness” standard to infants?
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What steps should guardians take to try to ensure that wards are not in pain? More broadly, what are standards for pain management and palliative care?
A Never-Competent Adult
John Storar was a 52-year-old man with profound mental retardation who was also suffering from irreversible bladder cancer. The cancer had spread to his lungs and perhaps other organs. The cancer was reckoned to be untreatable, but Mr. Storar was being given blood transfusions to manage a related loss of blood.
Mr. Storar had never been competent; he had the mental capacity of an infant. The hospital in which he was being cared for refused to administer treatment without the consent of a legal guardian, so Mr. Storar’s mother, his closest relative, applied for and was appointed guardian over his person and property. The guardian initially consented to the blood transfusions.
Mr. Storar had received the transfusions for some time, but was expressing resistance to the treatment. His guardian instructed the hospital to discontinue the treatment. The hospital refused to follow the guardian’s instructions and, instead, petitioned the court for authority to continue the transfusions, claiming that without them death would occur within weeks. With treatment, the hospital said, Mr. Storar’s life-span was estimated to be between three and six months.
The trial court denied the hospital’s petition and an appellate court affirmed that decision. On a second appeal, however, to the New York Court of Appeals, the court reversed these decisions. Mr. Storar continued to receive treatment while the appeals were pending, but he died before the New York Court of Appeals’ decision was issued.
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Questions for Discussion
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If a person has never been competent, he cannot be said to have had his own wishes or preferences. If that is the case, under what circumstances is it ethical to withdraw or remove treatment? Substituted judgment does not apply, leaving the best interests and reasonable person standards to carry the burden. Explain why either standard can be used to support the withdrawal or withholding of medical treatment.
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Compare Storar to Baby Boy W. Should it make a difference that Storar was a 52-year-old man whereas Baby Boy W. was one-month old?
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What resources does a guardian have when confronted with decisions in unfamiliar or difficult ethical cases? Hint: Hospitals and nursing homes are supposed to have committees to help.
The Terri Schiavo Case
In February 1990, at age 27, Theresa Marie Schiavo suffered a cardiac arrest, apparently as a result of a potassium imbalance. She was not resuscitated in time to prevent devastating brain damage, and she was eventually diagnosed as being in a permanent vegetative state.
For more than 10 years after the heart attack, Ms. Schiavo lived in nursing homes, receiving constant care. She received nutrition and hydration by way of a percutaneous endoscopic gastrostomy (PEG) tube to provide nutrition and hydration. During that 10-year period, Ms. Schiavo’s brain further deteriorated. Within six years of the heart attack, CT scans of her brain showed a severely abnormal structure, with much of her cerebral cortex destroyed and replaced by cerebrospinal fluid.
This meant that Ms. Schiavo could never be cured by medical treatment. She would never be able to see, hear, feel or communicate anything.
Ms. Schiavo’s husband and court-appointed guardian, Michael Schiavo, continued to care for and visit her. He never divorced her and he became a physical therapist working in a local hospital. As guardian, friends said, he always attempted to provide optimum treatment for her, and zealously advocated for her care. Theresa’s parents, Robert and Mary Schindler also visited her often, and were strong advocates for her care. Mr. Schiavo’s detractors alleged he was not caring at all, and made much of a subsequent romantic relationship with another woman.
A lawsuit for medical malpractice had been filed on her behalf shortly after her heart attack. That lawsuit ultimately resulted in a significant award of money.
In May 1998, after Mr. Schiavo and the Schindlers could not agree on whether to withdraw the PEG tube and because the inheritance issue created the appearance of conflict, Mr. Schiavo petitioned the court for an order authorizing the withdrawal of artificial hydration and nutrition; by this means, the court would serve as the surrogate decision-maker rather than him. The Schindlers opposed the petition. The trial court found, by clear and convincing evidence, that Ms. Schiavo was in a persistent vegetative state and that she would not want to continue to be sustained by artificial life support under the circumstances. The court granted the petition. An appellate court, finding sufficient evidence in the record to support the trial court’s findings, affirmed the trial court’s decision.
Extraordinary and probably unprecedented series of executive orders, state and federal appeals and legislation – and protests – continued until March 2005. The PEG tube was withdrawn on March 18, and Ms. Schiavo died on March 31.
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Questions for Discussion
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The Schiavo case is arguably the most interesting – and perhaps the most important – guardianship case ever. Distinctively, the guardian in this case was a spouse who had a falling out with his ward’s parents. What could have been done to prevent (or reduce the possibility of) the collapse of this relationship?
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In addition to a spouse as court-appointed guardian, two guardians ad litem were appointed at various points. Read their reports at the online resource cited above. What do they say, if anything, that bears on questions of substituted judgment or best interests.
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Several courts accepted and ruled based on Michael Schiavo’s reports that Ms. Schiavo would not want to remain on artificial hydration and nutrition. But in the absence of a written advance directive, it can be difficult indeed to determine a ward’s end-of-life preferences. In the absence of any explicit evidence of a ward’s preferences, what should guardians recommend when faced with a permanent vegetative state? Would any reasonable person really want to perpetuate such a state? If not, can a reasonable person standard be of use?
Removal of Life-Sustaining Treatment
Michael Martin suffered extensive injuries, including a severe head injury, in an automobile accident. He was unable to walk or talk, and had a gastrotomy tube to provide artificial hydration and nutrition. His wife was appointed his legal guardian. She was unsure whether to continue the treatment, and sought advice from a hospital ethics committee, which said both that withdrawal of the nutrition support was medically and ethically appropriate and that a court order was needed to effect the withdrawal.
The guardian petitioned a probate court seeking approval to terminate the treatment, but Mr. Martin’s mother and sister objected, requesting that Ms. Martin be removed as guardian. During subsequent legal proceedings, it was reported that before his accident, Mr. Martin had expressed the opinion that he would not want to “be dependent on people and machines.”
The trial court determined that there was clear and convincing evidence that, before his injuries, the ward expressed a medical preference to decline life-sustaining medical treatment under the circumstances, and the appellate court affirmed. The case eventually reached the Michigan Supreme Court, which considered whether life-sustaining treatment in the form of a gastrostomy tube that provides nutritive support should be removed from a conscious ward who is not terminally ill or in a persistent vegetative state, but who suffers from a mixture of cognitive functions and communication impairments that make it impossible to evaluate the extent of his cognitive deficits.
The Michigan Supreme Court reversed, concluding that there was not clear and convincing proof that the ward “made a firm and deliberate decision, while competent, to decline medical treatment in these circumstances.” The court noted:
As we begin our analysis, we are mindful that the paramount goal of our decision is to honor, respect, and fulfill the decisions of the patient, regardless of whether the patient is currently competent. The decision to accept or reject life-sustaining treatment has no equal. We enter this arena humbly acknowledging that neither law, medicine nor philosophy can provide a wholly satisfactory answer to this question.
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Questions for Discussion
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How should guardians interpret and present evidence of a ward’s past values regarding future incapacity?
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The Michigan Supreme Court wrote “…we must err in preserving life.” While this sounds reasonable enough, what exactly does it mean? Is it really always better to prolong life, or might it be morally permissible to err, say, in “preserving dignity and freedom,” or “honoring shared or basic values” …?
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Why do you think the hospital’s ethics committee wanted a court order to support its findings? What could a court add to the committee’s deliberations?
Authority to Amputate
Bob Warren, a 78-year-old diabetic, collapsed on the street. He was taken by ambulance to a VA Hospital over his wife’s objections, but with the approval of the physician. Mr. Warren was diagnosed as having had “dry” gangrene in his right foot for more than a month. Dry gangrene may lead to “wet” gangrene which involves infected, dead, non-viable tissue and has harmful effects on the cardiovascular and nervous systems. It can make diabetes medically uncontrollable. Warren’s condition developed into “wet” gangrene in two of the toes on his right foot. Moreover, Mr. Warren’s mental condition had deteriorated, and he was semi-conscious and unable to communicate.
Mr. Warren therefore lacked capacity to consent to or refuse medical treatment. Accordingly, the hospital staff advised Warren’s wife that amputation of Warren’s right foot to remove the infection was needed to improve his condition. Mrs. Warren, however, refused to consent to the amputation.
Mr. Warren’s condition deteriorated, and he was admitted to the ICU. He was put on a ventilator, given a pulmonary artery catheter, received a radial arterial IV, underwent a stomach decompression and was administered broad-spectrum antibiotics.
The hospital notified Ms. Warren about her husband’s worsening condition, and again requested her consent for the amputation because without it her husband’s death was imminent. She again refused to consent to the amputation. Thereafter, hospital authorities asked the United States Attorney to apply for a court order appointing a hospital administrator as guardian for Mr. Warren to consent to the surgical procedure to amputate his foot. Over Ms. Warren’s objection, the court appointed the hospital administrator as guardian for the limited purpose of consenting to surgery and any related treatment.
Trial testimony revealed that without surgery, Warren’s vital organs would continue to fail and he would certainly die. Surgery would give Mr. Warren a chance to survive; delaying the surgery would reduce that chance.
Mr. Warren’s wife was a registered nurse who had worked at Harlem Hospital for 30 years. She had been caring for her husband at home. She refused to consent to the amputation because, she said, the physician interns had a morbid desire to cut and had little to occupy their time. She also contended that her husband would refuse to consent to this surgery because he would rather die than not have his foot. She said her view was based on past conversations with her husband about his sister, who died after diabetes-related complications after she refused to consent to surgery.
The court found Ms. Warren’s testimony insufficient to establish clear and convincing evidence that Mr. Warren, before becoming incompetent, had expressed a wish that in the face of imminent death, no amputation should be allowed. While acknowledging Ms. Warren’s genuine care for her husband, the court found her testimony questionable in strength and reliability in light of her intractable conviction that her husband was not suffering from a dangerous gangrenous condition despite medical evidence to the contrary. The court was also troubled by Ms. Warren’s hostility toward the medical staff at the hospital, and found that her strongly held convictions impeded her objectivity in reporting the true state of her husband’s intention under the circumstances.
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Questions for Discussion
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Is it appropriate for a hospital administrator to be appointed guardian of a patient in the administrator’s own hospital? Why or why not? Is it significant that the administrator was appointed guardian for the limited purpose of consenting to surgery and any related treatment?
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Mr. Warren is not in a persistent vegetative state; nor does he have a condition from which he is unable to recover. Should this fact have any bearing on his right to refuse treatment through a surrogate? Why or why not?
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Should a guardian be permitted to refuse to consent to an amputation when the refusal would result in a ward’s death? If so, how is refusing to consent to a life-saving amputation different than refusal of any other life-prolonging treatment?
Abortion Ordered for Rape Victim
28-year-old woman who was deaf and had the cognitive skills of a 4-year-old was raped and became pregnant. Her guardian sought approval from the court to terminate the pregnancy.
The ward had a shunt in her brain to drain excess fluid and her neurologist testified that the pregnancy had been painful and resulted in the ward becoming “violently ill” when the shunt was under too much pressure. He maintained that continuing pregnancy full term would be dangerous for the ward. Though essentially unable to communicate, the ward was able to utter the words “My baby no more.”
The ward was believed to have been raped, likely more than once, according to police. Accordingly, the judge authorized an abortion, a tubal ligation to prevent future pregnancies, and the collection of a DNA sample from the fetus so that police could identify the rapist. The orders were carried out.
A source for a newspaper reporter was quoted as saying, “This is as close to Solomon as you’re going to get.”
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Questions for Discussion
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Florida’s guardianship statute (FS744) requires a court order to approve abortion, sterilization or psychosurgery. But the law does not provide guidance for judges in making such determinations, meaning that ethics – and not law – must inform these rulings. What ethical rules or principles ought a judge use in deciding such cases? Hence,
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Should the judge have ordered the abortion? Why or why not? Should the judge have ordered the sterilization? Why or why not?
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Should the woman’s statement, “My baby no more” be taken to mean she wants an abortion? Given that the woman needed a guardian to make decisions for her, how much weight should a guardian give to her own opinions and decisions? If someone is adjudicated incompetent, how should a guardian then interpret the ward’s statements regarding care?
Guardian for a Fetus
JDS, a 22-year-old woman with severe mental retardation, cerebral palsy, autism, and seizure disorder, was raped and became pregnant. The Florida Department of Children and Families (DCF) petitioned a court for an order authorizing emergency adult protective services and appointment of a guardian. DCF intended to seek a guardian for the fetus after it was born.
Florida Gov. Jeb Bush then intervened in the case by asking DCF lawyers to ask the court to appoint a guardian for the fetus itself, that is, not waiting for it to be born.
DCF then tried to make the fetal guardianship case by arguing that JDS was taking numerous medications which would be detrimental to the fetus. The Department also argued that JDS’s interests and needs, as expressed by her guardian, were potentially adverse to those of the fetus. DCF also contended that JDS’s guardian was required to avoid conflicts of interest, and that such a conflict was likely because JDS’s medications could harm the fetus.
Jennifer Wixtrom applied to be appointed as guardian for the fetus, alleging that the appointment was essential because JDS lacked capacity to provide proper prenatal care and make necessary decisions for the protection and enhancement of the fetus. She further contended that JDS’s guardian might elect to have an abortion or fail to consider her medications would have an adverse effect on the fetus. The trial court denied Ms. Wixtrom’s petition and her subsequent motion for rehearing, and entered an order stating that JDS’s guardian had created a plan which stated that an abortion would not be performed.
The court denied the appointment of guardian for the fetus, and this ruling was appealed.
While the appeal was pending, JDS delivered her baby. Although the birth of the child rendered the appeal moot, the appellate court decided the case on the merits because the issue was considered one of great public importance, and capable of recurring. The appellate court affirmed the trial court’s denial of Ms. Wixtrom’s petition, finding that Florida guardianship law does not extend to fetuses.
Addressing Ms. Wixtrom’s concern that JDS might have elected an abortion, the appellate court pointed out that Florida law requires a guardian to obtain specific authority from a court before consenting to an abortion for a ward, and that before the court can grant such authority, it must appoint an attorney to represent the ward, receive independent evidence from experts, and find by clear and convincing evidence that the incapacitated person cannot make the decision and that the requested procedure is in the best interest of the ward. The court could also appoint a monitor to conduct an investigation, collect evidence, and report its findings to the court.
The appellate court upheld the trial court’s refusal to appoint a guardian for a fetus.
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Questions for Discussion
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The case was politically charged, and received international attention. If fetuses have rights that include the protections of guardianship, it would mean that fetuses are persons. How does this question bear on the debate about abortion?
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Should fetuses have guardians? Answer this question in the context of the many cases of what obstetricians call “maternal-fetal conflict.”
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JDS already had a guardian committed to protecting her interests. What could be the consequences of a fetal guardian duty-bound to protect the interests of a fetus in cases when the two guardians disagreed? How could such disputes be resolved?
Mother Seeks Sterilization of Son
A 63-year-old woman from South London, who has a son with Down’s Syndrome, petitioned the court to have her son sterilized. She said she can no longer keep him under strict supervision and any pregnancies he causes would have serious consequences for both the mother and child. The mother is worried that when she can no longer provide for him her son will have to go into residential care. She fears that being in residential care would make her son even more vulnerable than he is now – if he is not sterilized. In residential care, she said, there will be more opportunities for her son to form relationships with women.
The mother said she believes that sterilization is in her son’s best interest, and had experts testify that her son’s quality of life would improve with the procedure. However, this is disputed. The mother says her son has sexual awareness, but is unable to connect the act of sex with pregnancy. She said the operation would give her son the chance to have relationships without the risk of being responsible for a pregnancy.
The family court division president said that so long as the mother continued to care for her son, then he would be closely supervised.
The sterilization was eventually rejected by the court.
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Questions for Discussion
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Should a ward be sterilized to eliminate the risk of another’s pregnancy? Would it matter if the ward were a woman and the sterilization would prevent her pregnancy? How so or how not? (Hint: Is the sterilization procedure reversible?)
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If sterilization is not to be allowed, how can the mother prevent her son from impregnating a female, when he is unable to understand the link between sex and pregnancy and when he himself will be unable to support or care for a child? What are some ethical solutions to prevent an unwanted pregnancy?
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In such cases, should a potential child’s quality of life be taken into account? Suppose the young man’s mother were afraid she would acquire responsibility for raising her grandchild – what weight, if any, should be given to that concern?
Sterilization of the Disabled
Consider these two scenarios:
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Alice’s daughter, Jane, is 21 years old and was born with Down’s Syndrome. When her brother brought home a new baby, Jane also wanted one. It is unclear whether Jane understands how a woman becomes pregnant. Her mother does not believe that she has ever had sex and kissing is still an unusual experience. If Jane were to become pregnant, Alice knows that Jane would be unable to care for her child and it would become Alice’s responsibility. So far, Alice has not chosen to have her daughter sterilized, but she also does not want her daughter to have children.
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A single mother living with her 15-year-old daughter wants a court to permit her daughter’s tubal ligation. The daughter was born with an unusually small head and suffers from cerebral palsy. She frequently has seizures. Her IQ is in the 40s, which puts into question whether she can understand such a procedure and its consequences. The girl does not know her phone number or address. She does know her name, but is unable to spell it. The mother’s lawyer said the girl has no concept of life and death. The lawyer said the daughter suffers from daily seizures and that if she were pregnant, "the seizures themselves could cause complications for the fetus. The hormonal effects of a pregnancy could have fatal effects on her because of its effects on her seizure disorder. Seizures during pregnancy can be very dangerous."
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Questions for Discussion
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What are key distinctions between these scenarios? Is the medical risk to the fetus in the second scenario significant?
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If a child with mental retardation did get pregnant, and if, as the child’s guardian, a parent may seek an abortion, can sterilization be seen as a preventive measure to avoid such difficult future decisions?
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A parent or guardian cannot watch over a ward at all times, so sterilization can allow the guardian to prevent unwanted pregnancies and hence the possibility that a child will be conceived and delivered to parents who are unable to care for it. Is it morally permissible for a guardian who might have to help care for a child who is the result of an unwanted pregnancy to prevent the possibility of such a pregnancy in the first place?
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Why is the systematic sterilization of those with mental retardation universally regarded as abhorrent?
Brain Dead and Pregnant
Susan Torres, 26, was pregnant when aggressive melanoma spread to her brain and she lost consciousness from a stroke. The stroke caused severe brain damage, and she was eventually diagnosed as brain dead. Because Ms. Torres was pregnant, her family decided to keep her on “life support”[1] machines until her fetus was viable. Torres’s family believed that she would want to be maintained in such a state for the sake of her future child.
As a result, Ms. Torres was kept on machines for three months, or until her fetus reached the point where it could survive outside the womb. There was the chance that Torres’s cancer could spread into the placenta and harm her fetus; however, the hospital carefully monitored this possibility.
After the delivery of the baby, the family removed Torres from the machines.
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Questions for Discussion
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What standard for surrogate decision making should be followed in such a case: substituted judgment, best interest or reasonable person?
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Family members all agreed that Ms. Torres would have wanted to be kept on machines until her baby could safely be born. But what could be the evidence for such a report? Did Ms. Torres actually contemplate being pregnant and brain dead? What kind of beliefs about others’ values can be used in making such decisions?
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There was a small chance that Ms. Torres’s fetus could acquire the spreading cancer. If the chance of the cancer spreading to the placenta were great, should this matter in trying to decide whether to save the fetus’ life?
[1]The phrase “life support” appears in quotation marks because it makes no sense, precisely speaking, to say a brain dead patient is on life support. That is, brain dead patients are dead, according to ethical consensus and 50 different state laws, and there therefore is no life to support. But the phrase is almost impossible to avoid in cases such as this.
