To Consent or Not: Stewards of the “Gift”
This, the third part in a series of reports from The Daily.cz entitled Skin and Bone: the Shadowy Trade in Human Body Parts of the International Consortium of Investigative Journalists, looks at the vague issue of consent in some countries and what it means in reality. Consent is not required in the Czech Republic, as the system is Opt-out, meaning everyone is a potential donor.
Stewards of the “Gift”
By Kate Willson
The International Consortium of Investigative Journalists*
Mandi Eisenbeis stood over her dad. It was a Thursday in May 2011 when she said her private good-byes at a funeral parlor in Lodi, Calif. George “Randy” Eisenbeis had died young, felled at age 57 by a methamphetamine overdose.
As she looked at him lying in the coffin, she noticed his hands were oozing blood.
Eisenbeis didn’t know what had happened until later, when she learned the funeral director had sent a scathing complaint to the California Transplant Donor Network, the nonprofit organ and tissue bank that had stripped out George Eisenbeis’ usable parts.
“To say that this was simple a ‘hack job’ would be a compliment,” Lodi Funeral Home’s Michael Collins wrote in a letter accompanied by a series of graphic photos of a the torn-apart corpse. “I guess we should consider ourselves lucky that you left his head and his hands for viewing, and yes, that is his severed foot in the photo to the bottom left of the embalming table.”
In March the family sued the California organ bank, accusing it of fraud, mutilation of a corpse, and infliction of emotional distress.
According to call logs made of the consent process, the bank told Mandi Eisenbeis at least four times during the recorded consent process that the body would be properly put back together. She and the family couldn’t give informed consent, the lawsuit charges, because those promises were lies designed to manipulate them into giving their okay.
The California Transplant Donor Network is accredited by the industry gold standard — the American Association of Tissue Banks. According to its policies, tissue banks are required to reassemble a body out of respect for donors, their families and the professionals who handle bodies on their way to burial or cremation.
The tissue bank declined requests to comment for this story. In court filings the tissue bank has denied wrongdoing. In an earlier public statement the organization suggested that Randy Eisenbeis’ corpse had been in good condition when it sent it to the morgue for autopsy. “No matter how complex the reconstruction process may be, it is a standard to which we adhere consistently,” it said. “Unfortunately, we cannot speak to what may transpire once a donor’s body leaves our control.”
The medical examiner’s autopsy findings, however, reported that George Eisenbeis came to him naked and skinned, with his feet “separated from the ankles.”
What happened to George Eisenbeis may not be typical of how bodies are treated when they enter the tissue donation system. But as a worst-case scenario, his story provides a window onto a system that some say operates with inadequate regulatory scrutiny — and raises questions about how well the industry lives up to its own standards about the manner in which tissue banks obtain consent to take tissues from the recently departed.
Families often know little about what happens after they say, “Yes.” Ethics experts say many families in the U.S. and other countries assume that standard donor agreements apply only to hearts, lungs and internal organs. They don’t realize that in the brave new world of tissue harvesting, the dead’s bones, skin, tendons and heart valves can be cut out and used to create medical devices that can be sold for profit around the world.
Tissue from about 30,000 cadavers in the United States is cleaned and milled into medical devices each year and some is exported around the world. U.S. companies also obtain tissue from places including Slovakia, the Czech Republic and Latvia.
In many countries, the law allows tissue harvesting unless a donor opts out before death. In the United States, federal law requires that they get families’ approval. How they do that is up to states to decide — and many states have few requirements or guidelines. People are often unaware just what they are giving away when they agree to become a donor. And families often don’t know that when they okay donations to nonprofit organizations such as the California Transplant Donor Network, the tissue routinely goes to for-profit companies, feeding a billion-dollar industry that uses those tissues for everything from repairing a knee to plumping up a penis.
Without uniform federal standards, it is mostly left up to tissue banks to decide how much information to share with donor families. Few states require that companies tell families their loved ones’ tissue can be sold overseas, sent to a for-profit company or used in cosmetic procedures such as wrinkle-fillers and nose jobs.
“At Present the industry thrives because of public ignorance and indifference regarding the for-profit involvement” Robert Katz, a law professor from Indiana University wrote in 2006. “Most donors are either unaware of such involvement, or it does not trouble them enough to stop donating.”
In a 2010 study by researchers Laura Siminoff and Heather Traino, 70 percent of donor families said they’d object to a loved one’s tissue going to a for-profit business. Yet fewer than one in five said they’d been told that the harvested tissues could go to a for-profit company.
U.S. Sen. Chuck Schumer, a New York Democrat, introduced legislation in 2007 that would have established mandatory requirements for what banks had to tell donor families, as well as try to limit the profits companies can make from the donation. But the bill died after heavy lobbying by the industry, Schumer said.
Industry representatives have declined to answer questions for this story.
Chris Truitt, a former industry insider, is among the advocates who are working to reform the system and force companies and nonprofits involved in the process to do a better job of informing the grieving about what will happen to remains of family members who’ve died. Truitt is the author of a book, Dark Side of Tissue Donation, which exposes what he sees as abuses and profiteering within the donation system.
He began working in the industry after living through a family tragedy.
His daughter Alyssa was born with a condition that causes fluid to build in the brain. When Alyssa died at age 2, the Truitts donated her organs and tissues. It soothed the pain to know their daughter’s death had helped others in need. He and his wife began promoting donation.
“I felt it was basically my calling in life,” Truitt said. “I ended up doing what I could to find a position working in the field.”
Truitt signed on with nonprofit tissue bank Allograft Resources of Wisconsin. “My job was to go out and do the procedures. To recover bones, skin, veins, heart valves,” he explained. “We’d take the long bones out, we’d take skin out, take the veins out, take the heart valves out.”
The tools were mostly those found in any operating room — scalpels, retractors, scissors, and clamps. Sometimes, though, Truitt and other recovery technicians also used metal wedges and mallets to break through the bone.
Still, they prided themselves on being “stewards of the gift.” Donors, he said, were treated with respect. Once, an elderly woman whose husband had died thanked Truitt for his work. “She said that at his age in life, he and she both felt that they were completely useless, they had nothing left to give. But by being able to donate, it kind of showed that they still meant something, they were still worth something, they were still able to help somebody.”
But the bank’s record keeping was abysmal, making it impossible to track the tissue from donor to hospital buyer. In 2000 the U.S. Food and Drug Administration issued a warning letter — a serious and uncommon reproach. That’s when RTI Biologics — which had until then bought all the bank’s tissue — took over responsibility for its operations.
Once RTI got more involved in daily operations, Truitt said, training was upgraded. Experts came in to show him and his coworkers how to recover tissue in the most efficient manner. “I don’t think they made it any more professional,” he said. “I think they made it more industrial.”
The industrial part of processing and distributing tissue is so different from the soft nonprofit face that donor families are often shocked. “The for-profit trade in body parts is a legal gray area,” said Joshua Slocum, executive director of the Funeral Consumers Alliance. “This affects the confidence of the public and the whole donation process.”
Truitt has nothing against for-profit companies being involved in the industry. He just wants families to be fully informed when the dead’s remains are used to make commercial products. “What I’m saying is that I want that choice. I want to be able to know what that means. And I don’t think that’s what families are getting.”
That can be a challenge, given differences in disclosure laws among states as well as families’ vulnerability during the time of grieving.
Some families don’t want all the details, and it’s up to the organization seeking the tissue to judge how much to disclose, according to Christina Strong, a lawyer for organ and tissue banks and an expert on donation regulations.
Some families, Strong said, might say, “This is freaking abuse. Look, I’m giving OK. That’s it.” Others might say, “Yes, take it,” but they want an open casket funeral, which means that they need to be aware of the kinds of tissues to be taken and how that will affect the person’s appearance and clothing selection.
Most tissue donation center requests analyzed in the 2010 Study didn’t tell families that they could decide not to donate. And none told families they could change their minds after initially agreeing, according to the study published earlier this year in The Journal of Trauma, a medical journal.
Families often have even less information and fewer rights when it comes to harvesting tissue from the dead overseas. Express consent isn’t required, for example, when a company gets tissue from some former Soviet nations.
RTI’s trade-partner turned subsidiary Tutogen Medical has obtained tissue from the Czech Republic, Hungary and Latvia, where everyone is a donor unless they expressly opt out. The company also obtains tissue from Ukraine, where government morgues can recover tissue from the dead if they gain family consent.
Four of Tutogen’s Ukrainian suppliers have been investigated for allegedly taking tissue against the wishes of donors or their families. The first case was dismissed when prosecutors couldn’t prove the tissue hand been transplanted. The second was dismissed after the defendant died while a court deliberated his case. Two recent investigations are still pending.
The income that can be made from recovery to distribution is anywhere from $80,000 to $200,000 according to industry experts and court testimony. There is a cost involved in recovering, processing and distributing the tissue.
Overseas and in the U.S., some companies that profit from human tissue spend considerable resources cultivating sources of fresh bodies.
Phillip Guyett, who worked as a ground-level body wrangler in California, North Carolina and Las Vegas before he was sent to prison for falsifying death records, said the demand for tissue grows more intense every year. One tissue buyer, Guyett said, summed up the all-out competition for corpses this way: “Whoever has the most bone wins.”
When RTI took over the Wisconsin tissue bank where Chris Truitt worked, he said employees were pushed to compete hard with other tissue banks for access to bodies — courting hospitals, funeral homes and morgues. “We would convince them when they came across a death to call us in for the tissue, rather than some other tissue bank,” Truitt said.
Once the tissue left the bank, it was sent to RTI, sterilized and milled into implants. “It is a medical device. It’s regulated as a medical device,” he said. “It’s no longer part of Uncle John. It’s product XYZ123.”
Skin from the Wisconsin bank was also sent to New Jersey-based LifeCell. Truitt says a representative of LifeCell initiated an award for the person who could recover the most tissue from a donor. He said the award was named the Golden Dermatome Award after the instrument designed to strip layers of skin off a donor’s back, thighs and arms.
LifeCell did not respond to questions about the award but said in a statement to ICIJ that the company “is committed to improving patients’ lives.”
“When they started giving out those rewards, it really sunk into me that instead of being stewards of the gift and treating each donor with the ultimate in respect, the company was actually looking at each donor as a profit machine, as nothing more than raw resources,” Truitt said. “And it was our job to take as much of those resources as we possibly could.”
He left the bank, disillusioned that any profits could be made from recycling human tissues from donors like his daughter. He even had his name removed from his state’s list of organ and tissues donors. But he hasn’t given up hope.
“Saving lives, making lives better. That’s what it should be all about,” Truitt said. “I talk with a lot of recipients. I talk with a lot of donor families. And we all feel the same thing. It’s too important a thing, too incredible a thing to just stop. We have to fix it instead.”
Mandi Eisenbeis hopes that her family’s lawsuit, filed this spring in San Joaquin County (Calif.) Superior Court against the California Transplant Donor Network, will spur that kind of reform among recovery banks.
The case is still in its early stages; the family’s lawyers hope lawmakers will notice the case and call for changes in how they obtain consent and treat donor bodies.
Eisenbeis said the condition of her father in the coffin — and the photos she saw afterward that showed the full picture of the mutilation — roused her to take her complaints to the bank.
Three times, she said, she sent copies of the funeral director’s letter and pictures to the tissue bank. Three times the bank said it never received the mail. Then, she said, it stopped picking up the phone at all.
It was only after getting the silent treatment, she said, that her family decided to file the lawsuit.
“I don’t want anyone to go through what I felt the day I saw those pictures,” she said. “For me, I just wanted things to change, and when I saw those pictures I knew that I had to do everything I could to get someone to stand up and listen to me.”
Contributors to this story: Vlad Lavrov, Martina Keller and Thomas Maier
* The International Consortium of Investigative Journalists is an independent global network of reporters who collaborate on cross-borders investigative stories. This story was co-reported by National Public Radio (USA).
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