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Corneas removed without permission
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Published: 20 years ago

Corneas removed without permission

Corneas removed without permission

Under law that allows tissue to be taken after death, relatives often never find out

By Ralph K.M. Haurwitz
Sunday, August 18, 2002

Imagine that your spouse, child or parent dies in a car wreck, by a robber's bullet or of an unknown cause. Then suppose that, without your family's knowledge or permission, the county medical examiner investigating the death allows a technician from the local eye bank to remove the corneas from the body.

With a few deft strokes, the thin, transparent tissue that covers the colored part of the eye is cut out, later to be transplanted into someone whose corneas have become clouded by disease, injury or infection.

You are none the wiser; flesh-colored plastic caps slipped over the body's eyes hold the lids closed.

This occurs routinely in Travis County.

Under a little-known state law enacted 25 years ago, it's legal. The law allows corneas to be removed if medical examiners are not aware of objections by relatives of the deceased, but it does not require medical examiners to ask the relatives whether they object.

The Travis County medical examiner's office granted approval to the Lions Eye Bank of Central Texas to remove corneas from 775 bodies from January 2001 through June 2002, according to records obtained by the Austin American-Statesman under the Texas Public Information Act. Eye bank technicians removed corneas from 401 bodies but passed on the rest because the corneas were in poor condition, the person's medical history ruled out the tissue or other factors precluded removal, the records show.

The county attorney's office sought to withhold the records, but the state attorney general's office ruled that they were public and had to be released.

The cornea plays a crucial role in vision, admitting light to the interior of the eye. People with damaged or diseased corneas see a hazy or distorted world, akin to looking through a camera lens that has been rubbed with sandpaper.

The Texas Legislature enacted the cornea law at a time when the demand for the tissue outstripped the supply. There has been no shortage in Texas or elsewhere in the nation for years.

Critics say the don't-ask, don't-tell system of obtaining corneas is unethical and unnecessary.

State Rep. Garnet Coleman, D-Houston, said he will file a bill during next year's legislative session to require consent.

"I would certainly want, if my organs or tissues could sustain someone's life, for that to happen," Coleman said. "But saying there's an implied consent because no one objected is not consent at all."

Dr. Roberto Bayardo, chief medical examiner for Travis County, defended the law and his office's policy of not contacting relatives or requiring eye bank officials to do so.

The cornea is so small -- roughly three-eighths of an inch across, about the size and shape of a contact lens -- that its removal causes essentially no disfigurement, Bayardo said. Asking for consent would dramatically reduce the number of corneas available for transplantation, he said, adding that there sometimes isn't time. Corneas must be removed within about six hours after death to remain viable.

"It's because of the importance of somebody regaining vision," Bayardo said. "It does so much good for people."

The cornea law, also known as the legislative consent law and the medical examiner law, allows justices of the peace in counties with no medical examiner to authorize cornea removals in deaths they investigate.

A separate state law allows a medical examiner to permit removal of the heart, lung and other organs and tissues if the family cannot be contacted within four hours after death, but that provision has been used only a handful of times statewide.

Some medical examiners and justices of the peace, including all of the justices of the peace in Hays County, do not use the cornea law, requiring instead that eye banks obtain consent from relatives.

Distraught parents In Travis County, even family members who object to cornea removal sometimes find their wishes thwarted. Teresa and Chris Spene were stunned to learn that their daughter's corneas were removed when her body was taken to the Travis County medical examiner's office for an autopsy. Jenna, 15, a student at McNeil High School, was killed in an auto wreck in May 2000.

The parents say they told an employee at Brackenridge Hospital they did not want their daughter to be an organ or tissue donor because they had never discussed the subject with her. A family friend discovered that her corneas were missing while dressing the body at a funeral home.

"It's like there's no respect for Jenna's body," the mother said. "It's unbelievable."

In April of this year, the Spenes sued the Daughters of Charity Health Services of Austin, which operates the city-owned hospital; Statline LLC of Denver, which makes and documents phone calls for tissue and organ procurement organizations; and the Lions Eye Bank of Central Texas, which removes and distributes corneas.

Bayardo confirmed that Jenna's corneas were removed but denied a claim in the lawsuit that portions of a foot and breast also were removed.

Court papers filed by the Daughters of Charity deny wrongdoing and assert that the organization had no legal duty to Jenna's family. Eye bank officials "generally deny" the lawsuit's allegations, the organization said in a court filing.

Marshall Cothran, chief executive officer of the Blood and Tissue Center of Central Texas, which was not named in the lawsuit, said the case illustrates how the cornea law fails to fully protect the interests of donor families. His organization, which does not procure corneas, was advised by a Brackenridge nurse that the Spene family had declined to donate any body parts.

"It's not ambiguous for us," Cothran said. "If the next of kin declines, we simply don't procure."

The eye bank, in contrast, routinely avoids contact with the family of the deceased in cases requiring investigation by a medical examiner or justice of the peace, said Damon Wagley, a former technician for the eye bank, tissue bank and medical examiner's office.

"You've already got an automatic yes," he said. "So you're risking an objection" by asking the family.

Bess Beliveaux, executive director of the eye bank, declined to comment on the Spene case or to discuss any aspect of her organization's operations. She referred questions to the eye bank's lawyer, Paul Jordan, who also declined to comment.

'Not our policy to ask' Bayardo said his office routinely calls the eye bank as soon as it receives a body to facilitate prompt removal of corneas. The medical examiner's office does not charge the eye bank a fee.

"We try to get the most corneas we can," Bayardo said. "It's not our policy to ask the family."

Bayardo's office conducts autopsies for about 40 counties between the Gulf Coast and Waco that do not have medical examiners. Most justices of the peace in those counties allow removal of corneas under the legislative consent law, Bayardo said. He said his office honors family objections relayed by hospital personnel or conveyed directly to his investigators.

On rare occasions, a family contacts the medical examiner's office to object after the corneas have been removed. In those cases, the office informs the eye bank, which returns the corneas to the body, although that is not legally required, said Darlene Dunn, Bayardo's office manager.

The Travis County medical examiner's office has been sued before over cornea removal. In 1991, the county agreed to pay $25,000 to the parents of Joseph Rodriguez, a homicide victim. The parents told an investigator for the medical examiner's office that they did not want to donate body parts, but the corneas had already been removed by an eye bank representative when the investigator returned to the office. Bayardo wrote a letter of apology to the parents.

More commonly, however, relatives never learn that corneas were removed. That's also the case for autopsies conducted at the Harris County medical examiner's office.

Barbara and Ron Mathis of La Grange were shocked to find out that their son's corneas were removed at the Harris County office. Bradley Mathis, 20, was killed three years ago in an auto crash in Katy, and his body was taken to that office for an autopsy. His mother found out about his corneas when she read the autopsy report.

"Bradley was sensitive about his eyes," she said. "He once told me, 'When I get to heaven, I want to have all my parts.' A part of me is happy that part of him is living on in somebody else, but I still think it should have been his decision and my decision. I just think this law stinks. It may not upset some families, but it upset us tremendously."

Donald Smith, a retiree living in Lakeway, isn't troubled by the law. His daughter-in-law, who has glaucoma, can see out of one eye thanks to a cornea transplant.

"How many people realize that a cornea is a thin tissue like Saran Wrap and the removal doesn't destroy the eye?" he said. "Thank goodness most people know that it isn't necessary to see to enter heaven."

Some do, some don't. The cornea law applies only to deaths that are required to be investigated by a medical examiner or justice of the peace, such as homicides, suicides, accidents, those of unknown cause and those that occur within 24 hours after admission to a hospital. Most deaths do not have to be investigated; in such cases, an eye bank must obtain consent from the donor or family.

Medical examiners, justices of the peace and eye banks around the state take varying approaches to the cornea law.

All justices of the peace in Hays County and some in Williamson County do not allow removal of corneas without relatives' consent.

"I'm a donor, but I think that should be a family decision," said Becky Sierra, a justice of the peace in San Marcos.

The Dallas County medical examiner's office, responding in part to complaints by families, adopted a policy about 10 years ago requiring the local eye bank to obtain permission from the family in all cases, said Dr. Joni McClain, a medical examiner for the county.

In Harris County, the medical examiner's office allows removal but has imposed stricter procedures on eye bank technicians in recent years.

"I came here in July 1996," said Dr. Joye Carter, the county's chief medical examiner. "They were coming here and getting bodies out of the refrigerator. They don't do that anymore."

Carter said a policy that barred removal of corneas from law enforcement officials "and other VIPs" has also been eliminated. Now, all bodies are treated equally, with cornea removal allowed if the office is not aware of family objections.

The San Antonio Eye Bank takes a mixed approach. It requires that family consent be obtained in cases where the body is transferred to the medical examiner's office from a hospital, because of the possibility that the family expressed an objection that was not conveyed to the eye bank, said Jim Wagner, the bank's director. But if someone is killed in a traffic wreck and the body is taken directly to the medical examiner's office, the eye bank will take the corneas without seeking consent because it is unlikely that anyone has approached the family to learn of an objection, he said.

"We're more comfortable with those circumstances," Wagner said.

Little effort has been made to educate the public about legislative consent, in Texas or elsewhere.

The Lions Eye Bank of Central Texas acknowledges on its Web site that it obtains corneas from the Travis County medical examiner's office but does not mention the cornea law. The Eye Bank Association of America, based in Washington, D.C., also does not discuss legislative consent on its Web site, which touts "the priceless gift of corneal donation." Even a brochure on organ and tissue donation published by the State Bar of Texas does not mention the cornea law.

Hospitals don't tell Nor do hospitals inform patients and family members about the law.

Hospitals in Texas are required by state law to develop a protocol for identifying potential organ and tissue donors and to make those protocols available to the public. The American-Statesman requested copies from St. David's Medical Center, the Scott & White medical system of Temple and the Daughters of Charity Health Services, which includes the Seton hospitals as well as Brackenridge.

The hospitals' materials do not explain that corneas might be removed in deaths subject to investigation unless the medical examiner or justice of the peace is made aware of objections.

"If a patient dies at St. David's under any of these circumstances, we do explain to the family why we're required to release the body into the M.E.'s custody," said Karen Kephart, a spokeswoman for the hospital. "From that point on, we leave it to the M.E.'s office to discuss their protocols and procedures with the family."

Legislative consent laws are also on the books in Connecticut, Delaware, Florida, Georgia, Kentucky, Maryland, New York, Ohio and the District of Columbia. In Mississippi, Illinois, Indiana, Oklahoma, Pennsylvania and Tennessee, cornea removal is allowed without consent if a "reasonable" effort to contact relatives is made.

"Cornea removal without consent constitutes a serious breach of ethics and morality," said Michele Goodwin, an assistant professor of law and co-chair of the Health Law Institute at DePaul University in Chicago. "Not only does the public not know that these laws exist, you find very often that lawyers, judges and policy-makers don't know these laws exist," Goodwin said. "And this ability to opt out is illusory. Unless someone has written on her shirt, 'Please don't take any parts of my body,' then the medical examiner won't be aware of any refusals to donate."

Erik Jaffe, a lawyer in Washington, D.C., who has written on the subject, said the laws put politics over principle.

"The reason they're not taking the heart or liver or brain is that would freak people out. The cornea is so small, they think nobody will mind. It turns out some people do mind," he said.

Although most religions support organ and tissue donation or are neutral, some Islamic leaders, traditional Confucian scholars and others believe that the body must be preserved.

Nationwide, the number of corneas obtained under legislative consent laws has been declining steadily, largely because of ethical concerns, said Mark Larson, executive director of the Lions Eye Bank of Wisconsin. More than 46,000 corneas were provided for transplants last year. Of these, about 10 percent were obtained under legislative consent laws and the rest with permission of the donor or family, Larson estimated.

Thousands of corneas are sent to other countries annually. Far more people donate corneas than donate livers, kidneys and other organs.

Several factors account for the surplus. Cornea transplants have been done since 1905, with the success rate now topping 90 percent. In addition, the Lions service clubs have been promoting donation for decades, having been inspired by Helen Keller to take on blindness as a cause.

A nationwide network of eye banks distributes corneas, which can be stored in a nutrient-rich solution for up to two weeks but which are usually transplanted within a few days. Federal law bans buying and selling body parts, but eye banks are allowed to charge fees for obtaining, storing and distributing corneas. The national average is $1,800 per cornea.

A rule proposed by the U.S. Food and Drug Administration is likely to further reduce the number of corneas secured under legislative consent laws. The proposal would require an extensive medical history interview with the donor, relatives or the donor's physician. Eye banks currently check for hepatitis, the virus that causes AIDS and other conditions by taking a small blood sample when they remove corneas. ;
445-3604 karl theis video field reporter
Ch.10 TimeWarner Austin,Texas cell 512 297-9875

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