Reply to each case with half a page (about 150 words)… no need of cover page
There are 6 cases, so just 3 pages total
The Case of Charlie Gard
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This case involved a baby in a London Hospital named Charlie Gard, suffering from a genetic disorder (Mitochondrial DNA Depletion Syndrome) that prevented his cells from producing sufficient energy for normal bodily functioning, leaving him, according to his medical team, with” catastrophic and irreversible brain damage.” Mitochondrial DNA Depletion Syndrome is progressive and inevitably fatal, and there is no proven treatment. The hospital at which Charlie was being treated determined in 2017, when Charlie was 11 months old, that further medical intervention was futile and indicated to the parents that they intended to terminate life support. Charlie’s parents, however, insisted they wanted to try an experimental procedure in the US that they believed had a small chance of prolonging Charlie’s life, and they wanted life support continued. The case then went to the courts, and the court in Britain ruled in favor of the hospital. Even after the parents raised some 2 million dollars to move their son to the US for the experimental treatment, the court still ruled against continuing life support, arguing that the treatment had little chance of success and would just prolong the poor child’s suffering. When the American doctors who had offered the experimental treatment to Charlie’s parents determined that Charlie’s condition had deteriorated too much for them to be able to help him, his parents finally ended their struggle to keep him alive. This case of course raises numerous moral issues concerning treatment of impaired newborns, many similar to those raised by the Baby K Case in the US, described in Pence’s book. Is it ever appropriate to over-rule the parents in a case like this, when the parents insist on continuing treatment that is futile? Can it be seen as analogous to cases when the government intervenes to prevent parents from harming their children? How do you determine when treatment is futile? If the government is paying, as is the case in Britain and in the US when treatment is covered by Medicaid, should the government have a say in how its health care resources are spent? How do you think this case should have been resolved? Why?
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The Case of Sidney Miller
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The article from the New Yorker Magazine by Jerome Groopman that I posted under Course Documents for this unit, entitled “A Child in Time,” mentions the 1990 case of Sidney Miller. This case arose, according to a Hastings Center Report from 2004, when “a twenty-eight-year-old woman twenty-three weeks into her first pregnancy … experienced contractions and … and prompt delivery appeared necessary. After discussing the child’s prospects with the couple’s obstetrician and a neonatology fellow, the father informed them that he and his wife did not want any “extraordinary, heroic” steps to be taken because of the child’s extreme prematurity. Their physician consulted the head of obstetrics and they concluded that a neonatologist should be present at birth and that the child should be resuscitated if it were born alive. A meeting was held with the father to discuss a treatment plan. The need to have a neonatologist present and initial treatment provided was explained. All parties present except the father thought there was a consensus that the child, if born alive and vigorous, would be resuscitated, and that later management decisions would be based on the child’s postbirth condition. The father denied that he had agreed to this plan
(After labor was induced, the) … mother delivered a 614-gram girl, Sidney Miller. The neonatologist present at delivery immediately treated the infant, first bagging and then intubating her. Her Apgar scores were three at one minute and six at five minutes. Some 90 minutes after birth, after central lines were inserted and surfactant administered, she was transferred to the NICU. The father, who was present at the birth, voiced no objections to the neonatologist’s presence or treatment. He signed consents for injections of Vitamin E, surfactant, and a blood transfusion within the first two hours after birth. On the fourth day after birth the child suffered a Grade III/IV intraventricular hemorrhage. Later the parents consented to surgical cutdowns to insert other lines, and at five weeks consented to insertion of a cerebroventricular shunt to relieve her hydrocephalus.
After two months in the NICU, the child was transferred to Texas Children’s Hospital, and six months after birth was released from the hospital. Her parents have cared for her since discharge at home. She has had numerous surgeries to repair or replace the shunt. She is now fourteen years old and has severe mental and physical disabilities: she has cerebral palsy, does not walk or talk, and is blind and incontinent. She smiles and appears to interact with parents to some minimal extent, although she seems to lack the capacity for symbolic interaction. With good care she could live to age seventy.
The parents sued the hospital and its corporate owners, but not the physicians, for treating the child at birth without their consent. After a two-week trial in January 1998, a jury awarded the family $30 million in compensatory and $13 million in punitive damages. The compensatory damages were based in part on the cost of providing care to Sidney until age seventy.”
As Groopman points out in his article, this judgment was later overturned by the Texas Supreme Court, which ruled that the treatment given Sidney was appropriate given the circumstances. What do you make of this case? Do you think that the initial jury decision was correct? What do you make of Sidney’s father’s assertion that “the hospital decision was little more than a rescue fantasy that doomed my daughter to the very conditions we attempted to protect her from”?
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The Case of R.B.
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In November, 2009, R.B., a one year old infant, was at the center of a court battle in England between his two parents, who were separated and who disagreed about whether treatment of R.B. should continue. R.B. suffered from Congenital Myasthenic Syndrome (CMS), a genetic disorder that affects the connection between nerves and muscles. There are varying degrees of severity of CMS, and varying prognoses depending on severity. Some of the less severe forms can be treated with drugs and patients can improve over time. R.B.’s condition, though, was described by the hospital he had been in his entire life as “rare, progressive, and incurable.” R.B.’s muscles were too weak for him to move effectively, and he was unable to breathe without the assistance of a respirator. So he had been hooked up to a respirator in a Neo-natal Intensive Care Unit since he was born. R.B.’s mother, who was described in news reports as having been at his side every day of his life, and the hospital team treating R.B., both concluded that R.B.’s quality of life was so poor, that he suffered so much, that continued treatment was futile, and he should be removed from the respirator and be allowed to die. R.B.’s father, however, wanted treatment to continue. He argued that the child had normal cognitive functioning and that a tracheostomy (cutting a hole in R.B.’s neck) would enable R.B. to breathe normally. The medical team treating R.B. disagreed. What do you think should have been done in this case? Who should decide? The mother? The father? The hospital? The courts? Should the courts rule to allow a child to die if one of the parents does not give his or her permission?
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The Case of Jimmy McCarthy
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Jimmy McCarthy was born in 1984, in a Catholic Hospital in a large U.S. city at thirty four weeks gestation, with Down Syndrome, partial duodenal atresia, liver pathology, a cardiac septal defect, and monosomy 18. None of these conditions alone were fatal, but together they made Jimmy’s prognosis grim. The duodenal atresia (not uncommon, as our textbook makes clear, in Down Syndrome babies), and the heart defect were potentially correctable through surgery, but the surgeons felt that Jimmy would not survive immediate surgery, and counseled that treatment of these conditions should be postponed four weeks. In the meantime, they thought Jimmy could be given intravenous nutrition and hydration. Monosomy 18 is a very rare genetic disorder. According to one description, “isolated cases of years of survival were reported in the literature, but it inevitably would involve severe retardation and institutionalization. The best judgment was that the child would be permanently bedridden with severe physical and mental impairment.” Jimmy’s parents were faced with the dilemma of whether to initiate IV feeding to see if the child thrived well enough to undergo the surgeries, or to withhold the IV feeding and allow Jimmy to die. The Baby Doe Rules, which were in effect at the time, permitted cessation of treatment only if the baby were inevitably dying, or irreversibly comatose, or if treatment were “virtually futile” and inhumane. Some of the health care providers felt that none of these conditions was met. Jimmy’s father, on the other hand, held that the result of IV feeding would be at least two major painful and traumatic surgeries which, if successful, would leave Jimmy with possible liver failure, residual heart problems, and a short life bedridden in a hospital with severe mental and physical impairments. What do you think the parents should have decided in this case? Do you think the treatment proposed for Jimmy was “futile?” When exactly do you think medical treatment is futile? In this case it could have prolonged Jimmy’s life potentially for years.
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The Case of Ginny Rutten
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Ginny Rutten, a three month old infant, was born with a very severe form of epidermolysis bullosa, a rare genetic disease involving the blistering and sloughing off of the skin and mucous membranes – in her case, the whole thickness, down to the fat and muscle. Ginny could not drink because the lining of her mouth was blistered and swollen, and so she could take no nourishment by mouth. Areas of her skin had eroded, producing patches of raw flesh resembling third-degree burns. Because of the breakdown of her skin, she suffered constant pain; also, the dehydration it permitted produced electrolye imbalances that put her at risk of heart arrhythmia and death.
There are now some treatments for this condition in its milder forms, but at the time of this case there was no cure and not even a treatment to prevent the blistering and peeling of Ginny’s skin. Ginny was sedated by a morphine drip and slept in brief cycles, but screamed in pain when she was awake. There was no case of a spontaneous cure or even a lengthy remission on record. Ginny’s physicians and parents discussed whether or not to feed her artificially, either by an IV drip, or through a surgical opening into her stomach, which would prolong her life, but, obviously, not cure her disease. What do you think the parents should have done in this case?
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The Case of Juli Meyers
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This case involves a 17 year old girl named Juli Meyers, a patient at a long-term health-care institution in the Washington, D.C. area. Juli has been at the institution for six years, and before that was at other special care facilities, but she is unaware of her situation. She spends her days lying in a bed surrounded by 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. She is blind and deaf and has no control over her bowels and bladder. She can swallow food put into her mouth, but she cannot feed herself. She makes no response to the people or events around her. Juli 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 she seemed normal but at three months she began to lose her sight and hearing, and made noises less and less frequently. By the end of her first year, she was completely blind and deaf, and she was losing control of her muscles. Her head lolled on her shoulders like a doll with a broken neck. She also became highly subject to infections, and more than once she had pneumonia. On at least one of these occasions, a specialist suggested to her mother that it would be pointless to continue treating her and that she should be allowed to die from the disease. Mrs. Meyers rejected the suggestion angrily. She devoted herself almost totally to caring for Juli at home, and the other four children in her family received little of her attention. Eventually, Mrs. Meyers began to suffer from depression and when Juli was eight her parents placed her in an institution. Since then, her condition has not changed. What decision do you think should have been made on Juli’s behalf when she was an infant and suffering from pneumonia? Would your decision have been the same as Mrs. Meyers’s? What about the cost of keeping Juli alive, which is now being borne by taxpayers – do you think that a case can be made that given our society’s limited medical resources that this is not a wise way for us to be spending our money?
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