Chapter 6: Rights, Truth and Consent
Section 1. Case Presentations
Dax case- Refusing Medical Treatment and Being Ignored - Issue : Autonomy
In 1973, Donald "Dax" Cowart, age 25, was severely burned in a propane gas explosion. Rushed to the Burn Treatment Unit of Parkland Hospital in Dallas, he was found to have severe burns over 65 percent of his body; his face and hands suffered third degree burns and his eyes were severely damaged. Full burn therapy was instituted. After an initial period during which his survival was in doubt, he stabilized and underwent amputation of several fingers and removal of his right eye. During much of his 232 day hospitalization at Parkland, his few weeks at Texas Institute of Rehabilitation and Research at Houston, and his subsequent six month's stay at University of Texas Medical Branch in Galveston, he repeatedly insisted that treatment be discontinued and that he be allowed to die. Despite this demand, wound care was continued, skin grafts performed and nutritional and fluid support provided. He wanted the treatments to stop so that he could go home and die; either through natural causes or by suicide. The doctors, who frequently hear such complaints from patients receiving painful procedures, did not stop the treatment. By continuing the treatment there was a very high probability of survival, while ending the treatment would result in almost certain death. He was discharged totally blind, with minimal use of his hands, badly scarred, and dependent on others to assist in personal functions.
Perhaps of significance is the fact that the procedure that Dax endured was a very new technology, thus if Dax had the accident ten years earlier he would have certainly died. Dax completed the treatment and regained a high quality of life, however, he has never recanted his belief that the decision to discontinue treatment was his, and his alone, and if he could go back into time, even with knowing the quality of life which he now possesses, he would still refuse treatment.
Cowart, who frequently speaks at medical and legal communities, is a libertarian and former Air Force pilot who overcame his disabilities to earn a law degree and who currently practices law argued that his right to die stemmed from natural law as posited by J.S. Mill.
This case raises any number of issues including autonomy, basic right of refusal, competency and paternalism amongst health care providers.
DeMasi Case: Pedophile- Issue: Confidentiality
Doctor should have
disclosed colleague's pedophilia, jury says
Medical ID Case- Issue: Confidentiality
Senate moves to repeal medical ID system Nation & World: Tuesday, July 28, 1998
by Edwin Chen Los Angeles Times
WASHINGTON - Citing privacy concerns, a bipartisan coalition of senators is moving to repeal a requirement for a national identification system - most likely a number - to track every American's medical history.
The repeal proposal was introduced Friday by Sen. Patrick Leahy, D-Vt., and co-sponsored by Sens. John Ashcroft, R-Mo., Conrad Burns, R-Mont., and Spencer Abraham, D-Mich., but got little attention after the fatal Capitol shootings that afternoon.
The proposed ID system was a little-noticed provision in the 1996 Health Insurance Portability Act, which requires insurers to offer medical coverage to those who need new insurance as a result of job changes.
The law requires the Department of Health and Human Services to develop a system - referred to as "unique medical identifiers" - for electronically transmitting health data as a way to aid the statute's implementation.
But as awareness of the identification proposal has grown, it has come under attack from privacy experts and conservative organizations, including the American Medical Association. They warn that details of a person's medical history could become available to insurance companies, employers and savvy Internet hackers.
With the introduction of the repeal proposal, lawmakers have officially joined the attack.
"Congress is playing the legislative equivalent of a game of chicken," Leahy said. "It is irresponsible to expose patients to this massive new erosion of their privacy. The impetus to computerize medical records for the sake of efficiency cannot be allowed to overrun our basic privacy."
Under the 1996 law, the "unique health identifiers" could be codes, numbers or some other method of identifying a person for a lifetime.
It would become the second national identification system, after Social Security.
The National Committee on Vital Health Statistics, which is advising federal officials on the creation of the medical ID system, held a hearing on the controversy last week in Chicago.
Leahy two years ago had fought against such a system, and the provision creating it was included in the insurance portability law at the insistence of the House of Representatives.
Backers of the ID number say it could help physicians treat patients, especially in emergencies, and help insurers keep track of claims.
The debate comes amid increasing congressional focus on privacy issues, particularly with the growth of the Internet.
A number of bills have been introduced to restrict the flow of personal information on the World Wide Web, including banning credit-card bureaus from releasing personal data and requiring Internet service providers to get a client's permission before releasing information about that person.
Unborn Child Case (Fetal Rights)- Issue: Confidentiality and Autonomy and Conflict in Rights
Fetal Abuse by Vince Beiser, MotherJones.com June 20, 2000
A growing number of women are being criminally prosecuted or having their children taken from them for doing drugs while pregnant. After years of hibernation, the legal concept of 'fetal rights' is apparently making a comeback -- to the alarm of women's rights advocates and health-care professionals.
Sally DeJesus knew right away she'd made a mistake.
After years of heavy cocaine use, she had been clean and sober for 11 months, and pregnant for nine, when she ran into one of her old crack dealers in a convenience store near Flat Rock, N.C. She was feeling lousy. Anxious to keep her system clean while her baby was growing inside her, the 28-year-old mother of two had months ago quit taking her anti-depressant medications; partly as a result, she says, she had been terribly depressed. "I'd hide in the bedroom crying," she says. "I wouldn't eat. I didn't shower for weeks at a time." To make matters worse, she and her husband had gotten into a bitter fight that morning.
So when the dealer offered to take her for a ride and get her high, DeJesus said yes.
"As soon as I did the first hit, I knew I'd screwed up," she says. "But when you're an addict, sometimes your judgment just goes right out the window."
The next day, DeJesus confessed to her midwife what had happened. "I told her I needed help," she says. "I was afraid for my baby." That night, DeJesus went into labor, and in short order gave birth to her daughter Emily -- who, despite her mother's prenatal relapse, came out perfectly healthy.
DeJesus' problems, however, were only beginning. Her midwife, it seems, had told the hospital where DeJesus was having her baby about her drug use. The doctors then tested newborn Emily for drug traces; when the tests came up positive, hospital staff called the police.
As DeJesus lay recuperating in her hospital room, Henderson County sheriffs marched in to interrogate her. By taking a drug that could have harmed her unborn child, they said, DeJesus had committed felonious child abuse. She is now awaiting a trial that could end with her sentenced to more than three years behind bars.
The concept behind DeJesus' prosecution is often referred to as "fetal rights": the notion that unborn babies deserve the same legal protections as children. After hibernating for several years, the issue is creeping back into view across the country, with a rash of women being charged criminally, or having their babies taken away from them, because they took drugs while pregnant.
The trend is deeply alarming to women's rights advocates and health-care workers, who warn that such a heavy-handed approach will only deter drug-addicted mothers-to-be from seeking out prenatal care. Moreover, many warn, such tactics may be paving the way for abortion -- the ultimate violation of "fetal rights" -- to legally be declared murder.
"These cases represent the intersection of the war on drugs and the war on abortion," says Lynn Paltrow, director of National Advocates for Pregnant Women, who has successfully helped argue against dozens of similar prosecutions in the last decade. "There may have been a temporary lull, but the issue has not gone away."
In the late 1980s and early 1990s, spurred by hyperventilating news stories warning of a coming deluge of "crack babies," prosecutors in more than 30 states sought to stem the anticipated flood by charging scores of drug-using pregnant women with everything from child abuse to manslaughter. In nearly all cases, however, judges eventually threw out those prosecutions, in part because the Supreme Court's landmark Roe v. Wade decision had firmly established that a fetus is not a person in the eyes of the law.
But in the last year, a fresh crop of fetal-rights cases have sprung up. In April, a 26-year-old Texas woman was indicted for child endangerment after her newborn tested positive for cocaine. The same month, a Pennsylvania judge ruled that prosecutors could charge an addicted mother with child endangerment for using heroin while pregnant -- even if her baby was born healthy. This spring, the Oklahoma state legislature nearly passed a bill making it a misdemeanor for pregnant drug abusers to fail to get substance-abuse treatment. And in Georgia, 21-year-old Shannon Moss is facing murder charges for allegedly killing her fetus by taking cocaine and amphetamines while pregnant.
Moreover, in recent years at least 17 states have enacted civil laws making it possible for authorities to take away the children of pregnant women who test positive for drugs. The Ohio Supreme Court may take up the issue soon. So far, hundreds, and perhaps thousands, of children have been taken from their mothers as the result of a single positive drug test, according to the Center for Reproductive Law and Policy.
The most bitter battleground, however, is South Carolina, the only state so far to have explicitly extended criminal child-abuse laws to cover fetuses. Despite directly contrary rulings in numerous other states, South Carolina's Supreme Court declared in 1997 that drug-using pregnant women can be prosecuted criminally -- and sentenced to as much as 10 years in prison.
Dozens of women have since been charged. Just last March, one woman was sentenced to three years in prison for violating her probation by "abusing" her unborn child with cocaine, and another drew a five-year suspended sentence for smoking marijuana while pregnant.
Such prosecutions were pioneered 11 years ago with the help of the Medical University of South Carolina in Charleston, where zealous hospital officials started a program of testing pregnant women for drug use, and turning over their findings to police. The US Supreme Court will rule later this year on whether that practice violated the women's Fourth Amendment right of protection against unreasonable searches.
Those who prosecute pregnant drug users say they have everyone's best interests at heart. "I just want the babies to be safe," says Tommy Pope, chief prosecutor for South Carolina's York and Union Counties, where the two women convicted in March live. "We try to use prosecutions as a last resort. But you run into situations where a woman has had five kids, and they've all tested positive for crack. Where do you draw the line?"
"Unless addicts are forced to stop, they won't," seconds Bobby Hood, the attorney representing the city of Charleston in the Supreme Court case. The threat of prison, he maintains, "has a very good deterrent effect."
But in fact, according to a broad range of women's rights and major health care organizations, the threat of prison is more likely to hurt, not help, the unborn babies of drug users, by frightening drug-using mothers-to-be away from seeking prenatal care. The American Medical Association, the American Academy of Pediatrics, and many other groups formally oppose criminal prosecutions of mothers of drug-exposed babies.
Even Daniel Kennedy , an Illinois lawyer who recently founded the incipient Fetal Rights Institute, doesn't think criminal prosecutions are the way to go. "Fetuses are definitely children," says Kennedy. "But jailing moms for hurting their kids prenatally doesn't help. It will only encourage women to seek abortions, or avoid treatment."
At least three drug treatment programs in South Carolina reported a drop in the number of pregnant women admitted in the months following the court decision. Brenda Dawkins, associate director of South Carolina's Keystone Substance Abuse Services Center, which treats many pregnant drug addicts, doesn't doubt the connection. "When the (state Supreme Court) decision came down, we were afraid women would not seek prenatal care, or would go over to North Carolina and continue using drugs, or would have their baby at home," says Dawkins. "All this has happened."
If fetal health were really the only issue involved, women's advocates point out, then prosecutors should also be going after expectant mothers who ingest other popular toxins. After all, according to the most recent national survey of pregnant woman, only a little over one percent used cocaine -- while nearly 20 percent smoked cigarettes, which are linked to a range of infant health problems, including as many as 7,000 deaths every year. Not to mention alcohol, the leading cause of preventable mental retardation in babies.
While there have been a handful of attempts to prosecute women for damaging their babies with heavy drinking, the vast majority of such cases have involved illegal drugs. Why? "Alcohol isn't illegal, cocaine is," explains Henderson County sheriff Carol Coss, who arrested Sally DeJesus. Yes, but the charge against DeJesus was child abuse, defined here as ingesting a substance that could have harmed her unborn baby; would Coss, then, arrest a woman for drinking a martini while pregnant? "Well," sighs Coss, "technically you could say it's abuse if you drink while pregnant. But no one's ever filed a report charging a woman with that."
Such prosecutions unfairly discriminate in other ways, women's advocates charge. South Carolina, where the attorney general has similarly stated that he will only prosecute pregnant women who use illegal drugs, suffers a chronic shortage of drug-treatment facilities for pregnant women -- meaning many pregnant addicts can't get professional help to quit even if they want to. Many other regions suffer a similar lack of services. New York City, for instance, ran 31 comprehensive drug-abuse and child-care clinics to deal specifically with drug-addicted mothers from 1990 to 1995 -- but almost half of these clinics have since been shut down. New York state, meanwhile, is currently considering a bill that would take away from mothers any newborn testing positive for drugs.
"There's a big misunderstanding that these women don't care about their babies," says Wyndi Anderson, executive director of South Carolina Advocates for Pregnant Women. "There just aren't the resources available for them to be able to take care of their babies. Lots of us grew up with parents who were alcoholics or drug addicts, but we have money to buffer us and keep the Department of Social Services from knocking on our doors."
A positive drug test -- even a recognizable drug habit -- does not necessarily predict someone's parenting ability, as any suburban weekend toker can attest. Studies and several major health-care and legal groups concur. As the American Bar Association's official position puts it, "[M]any people in our society suffer from drug or alcohol dependence yet remain fit to care for a child."
None of that, however, stopped authorities in Houston, Texas, from taking away Rita Veitenheimer's four children last fall, after her newborn tested positive for marijuana -- even though, according to the Times Record News of Wichita Falls, Texas, the baby was healthy and the older kids star students.
If criminal prosecutions against drug-using pregnant women continue to take root, Anderson and others predict the consequences for abortion rights will be dire. "If you're going to treat a fetus as a separate entity from the mother, why wouldn't you call abortion child abuse?" asks Anderson. That's a particularly relevant question in light of a bill recently passed by the House of Representatives that makes harming a fetus while attacking a woman an additional crime. Several states have passed similar laws.
All of that is academic to Sally DeJesus. For the time being, she's in a residential drug rehab center with baby Emily, just hoping to get clean for good, and to avoid jail. But no matter how her court case turns out, her life has been shattered. Her other kids are taunted in school because of her indictment, and her husband of 11 years is planning to divorce her, she says.
"What I did was wrong. I'm not trying to justify it," says DeJesus. "But I feel like I'm being punished for reaching out for help. I need this program now, not jail."
This article originally appeared in The MoJo Wire, the online sister publication of Mother Jones, the award-winning investigative news magazine. To subscribe to the magazine, click here. http://www.alternet.org/story.html?StoryID=9332
Christian Scientist Case- Issue: Parents’ rights vs Child welfare
CASE PRESENTATION- Summary by James Rowe, QCC, 2005
Faith v. Life: Christian Science and Robyn Twitchell’s Death
After eating very little for dinner, two-year old Robyn Twitchell began to cry, then to vomit, and finally to start screaming. His parents, David and Ginger Twitchell, belonging to the religion known as Christian Science, which holds the belief that no disease has any physical reality but that it is rooted in the absence of God, and thus all treatment must be spiritual and mental at its heart, and not physical in the least, did not take him to a doctor no matter how ill he was, but instead called a Christian Science practitioner, Nancy Calkins, to help with Robyn’s condition. She prayed for Robyn and sang hymns, and though she visited him three times over five days, there were no signs of improvement of his condition. During this time, a Christian Scientist nurse was brought in to help feed and bathe Robyn during his illness, reporting on her chart that he was “listless at times, rejecting all food, and moaning in pain”. This same nurse would also confirm that he continued vomiting. Five days into the illness, on April the 8th, 1986, Robyn’s began to spasm, his eyes rolled up into his head, and eventually he lost consciousness and died that night. The cause of death was found to have been a bowel obstruction relatively easy to fix via medicinal and surgical treatment, with experts confirming that he would have had, in all likelihood, survived if such treatment was sought out, which it was not. Subsequently, David and Ginger were charged with involuntary manslaughter of their son.
The trial of the couple lasted two months, with the Twitchell’s attorneys appealing particularly to the notion of religious freedom enshrined within the First Amendment of the US constitution, with the prosecutors responding to the limiting of said right in prior cases as involved polygamy and vaccinations and blood transfusions for minors. Further claims were made that Robyn’s rights were violated by not seeking proper medical treatment, citing the 1921 Supreme Court ruling of Prince v. Massachusetts that affirmed that, “Parents may be free to become martyrs themselves, but it does not follow they are free to make martyrs of their children.” Eventually, the jury found the Twitchell’s guilty and sentenced them to ten years probation on the recommendation from the prosecutor, John Kiernan, that the conviction not include jail time, giving his reason as, “The intent of our recommendation was to protect the other Twitchell Children.” As part of the conviction, Judge Sandra Hamlin instructed the Twitchells that they were to seek medical care if any of their other children required it and to take their children for regular checkups.
Needless to say, the devout Twitchells were not happy that their religious rights were being curtailed, with David stating, “This has been a prosecution against our faith.” A spokesman for the Christian Science church also held this view, stating that, “They’re trying to prosecute out of existence this method of treatment.” It is, however, worthy to note that David Twitchell also stated that, “If medicine could have saved him, I wish I had turned to it.”
An appeal was made by the Twitchell’s on the grounds that the ruling did not take into consideration a part of the Massachusetts child-neglect laws, which exempts explicitly those who believe in spiritual healing, an exemption found in forty-four other states. Due to this, several groups have campaigned, amongst them the American Academy of Pediatrics, to see to it that these laws are overturned, although their only success has thus far been in the state of South Dakota.
This case is by no means isolated, with Christian Science parents being convicted felony child abuse, child endangerment, or involuntary manslaughter in California, Arizona, and Florida, although it is worthy to note that no Christian Scientist has ever gone to jail. This is in marked contrast with similar cases involving other religious groups, such as the Church of the First Born, Faith Assembly, and the True Followers of Christ, who alongside conviction, have been suffered imprisonment. Critics have leveled charges that it is due to the general middle and upper-middle class nature of the members of Christian Science, as compared to other “fundamentalist” groups, as well as Christian Scientists generally being in a greater position to influence politics.
According to medical experts who testified at the inquest, common practice among parents in the community with a child manifesting Robyn's symptoms would have been to wait no longer than 48 hours before seeking medical attention. In July, 1990, the Twitchells were convicted of manslaughter. The conviction was overturned in 1993 and the conviction did not have the impact on the law and its application that supporters of the welfare of children had wanted. Regarding the ramifications of this case, some legal observers erroneously thought that the Twitchell case would galvanize efforts to eliminate the spiritual-healing exemption, but even after the conviction of the Twitchells was overturned in 1993, no such thing has taken place, and the religious beliefs of parents have been upheld to be of more importance than the medical welfare of the children. Whether or not this shall continue to be the case remains to be seen.
The religious beliefs of parents are in most cases given precedence over the physical welfare of their own children. 44 states have spiritual healing exemption statutes that exempts those with sincere religious beliefs from the usual laws on child neglect.
CASE PRESENTATION- Summary by James Rowe, QCC, 2005
Privacy and Medical Identification Cards
In 1996, Congress passed The Health Insurance Portability Act, a part of which mandated that each American citizen be given a “unique health identifier”, or “medical identification number”, to be used to locate one’s entire medical history in a nation-wide computer database to facilitate the fast retrieval of accurate information regarding a plethora of crucial medical facts necessary to assure safe and effective treatment, specifically in emergency situations where there is no time to waste in determining allergies, current medical conditions, et cetera. Aside from emergency care considerations, this medical I.D. number would allow for other improvements ranging from streamlining routine care by removing such hassles as having one’s records sent to another doctor, the reduction of administrative costs in insurance via making the process of billing easier and preventing patients from lying on their insurance forms about conditions and health risks, by providing doctors with the capacity to look up ways to treat patients with similar disorders exceedingly easy, as well as to allow for doctors and scientists to find genetic, seasonal, geographic, and other patterns in the spread of a disease, as well as more easily compile data to judge the effectiveness of various treatments.
Whilst the benefits of the medical I.D. number are clear, they do, however, come at a cost, argue the critics of this system, who further assert that this cost is privacy. Worries over whether or not people would be protected from “prying eyes” seeking out the intimate details of their life, whether someone who gains access to these records could use such things for discrimination based on medical history, and whether or not the government might have too much power to know everything about a person are all validated by the fact that there are, as of yet, no federal standards to protect the privacy of individuals in such a manner, and though thirty-five of the states have enacted laws regarding such, no uniform standards have thus far been arisen. The fear is real and so is the problem.
As shown in numerous polls, Americans greatly value medical privacy, and although this is not likely to change, many maintain that political compromise would nonetheless lead towards lowering of standards if any federal law was passed. This leads us to the true question, which is whether or not privacy is worth being held higher than medical safety, or even if there are ways to provide a medical I.D. number, or a system similar to it, without sacrificing privacy in the process. As an ongoing debate, no consensus has thus far been reached.
Consider some further Cases:
1. There are a variety of national and local laws that impose restrictions on what people can do with regard to providing or receiving health care. These are infringements on the choices that would otherwise be available. Among such laws are those that requires all behavior therapists to be licensed psychologists or psychiatrists and that drugs receive approval before being marketed.
Why can't people have access to anyone who might be able to help them in their time of need?
Why can't people have access to any chemical that might be able to help them in their time of need?
2. Although those who are Jehovah Witnesses refuse to consent to procedures that might involve blood transfusions there are cases where their refusal is disregarded and invasive surgical procedures are performed without their consent. Courts have upheld such actions under certain circumstances.
Why can't people refuse medical procedures for religious reasons?
3. It is permitted in certain jurisdictions for physicians to withhold information about minors for whom they are providing medical services from their parents and even to perform medical procedures, including major procedures, without informing the parents.
Why can't parents know about what is being done to their own children? Why aren't the parents asked for permission to do the procedures as they would be for something as simple as a root canal or sutures?
4. A school psychologist informs on an employee (janitor) working in the school concerning certain conditions for which the employee is being treated. The managers of the school decide to terminate employment of the janitor.
Why can't a person's medical condition be kept confidential? How are people to be expected to seek assistance if their conditions may be communicated to others?
5. Parents refuse treatment for their child and despite their refusal the medical procedures are carried out.
Why can't parents have the decision making authority concerning the welfare of their own children?
6. A pregnant woman with a spinal cord injury asks to receive no further treatments of any kind and be left alone to die. This request is denied and procedures and treatments are rendered unto her despite her refusals.
Why can't people have control over their own bodies?
These cases bring to the fore the matter of rights. Just what are the basic rights that humans have that are to be respected in medical research and treatment? This is the topic of this chapter. In order to get to the basic issues there is a need to first consider a number of philosophical points and concepts.
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© Copyright Philip A. Pecorino 2002. All Rights reserved.
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