Jehovah's Witness sues Kansas for bloodless transplant

Kansas City Star/April 19, 2011

As much as Mary Stinemetz wants to live, she's ready to die for her faith.

Suffering from the late stages of liver disease, Stinemetz, 64, needs a transplant. But the operation could cost more than $250,000, an insurmountable expense for her family.

Whether she gets a transplant could depend on how far she's willing to battle for her beliefs in a courtroom drama that will unfold in the Kansas Court of Appeals today.

Living in the small western Kansas town of Hill City, Stinemetz could get a liver transplant, one that would be paid for by Medicaid, at the University of Kansas Hospital.

But she also would have to compromise her Jehovah's Witness principles, because she would receive a blood transfusion, something she believes violates God's law.

Stinemetz, however, could undergo bloodless transplant surgery in Omaha, Neb., but Kansas is refusing to pay for the out-of-state procedure when a transplant is readily available in Kansas.

That puts Stinemetz at the center of a constitutional controversy that pits Kansas' Medicaid rules against her right to exercise her freedom of religion - with her life hanging in the balance.

"I love life," Stinemetz told The Kansas City Star by telephone. "But when it comes to obeying our creator, I am going to obey my creator before I do anything else, because he gave us our life. You've got to follow his laws."

Stinemetz is suing the Kansas Health Policy Authority, which administers the state's Medicaid program. She contends that the state is violating her First Amendment rights to exercise her religion. She lost one round in her fight in December in Graham County District Court.

State officials declined to comment prior to today's hearing. But in earlier court pleadings, the state contends that she didn't provide any evidence that her rights were infringed upon because coverage was denied.

"There is no medical necessity for the beneficiary to have a bloodless transplant - a regular liver transplant is available in Kansas and would be considered medically necessary," the state said in denying coverage in early February 2010. "The beneficiary's religious preference to have a bloodless liver transplant does not meet medical necessity."

Wayne Wallace, a physician advising the state, also warned of the ethical issues a surgeon would face if a patient elected to have a bloodless transplant.

Although the surgical procedure between the two types of transplants is the same, the bloodless technique implies the surgeon would be willing to accept a patient's death, even if a transfusion might save the patient, Wallace said at March 2010 hearing.

However, Stinemetz said Jehovah's Witnesses follow biblical directives to abstain from blood, pointing to passages in the books of Acts, Genesis and Deuteronomy, according to court records.

Church doctrine leaves it to the discretion of members to accept certain blood fractions and donor organs.

The Watchtower Bible and Tract Society of New York has filed a friend-of-the-court brief on Stinemetz's behalf.

The group said that Kansas was forcing Stinemetz to choose "between forgoing all surgery or submitting to medical treatment that violates he religious beliefs."

But in court papers, state lawyers noted that Stinemetz acknowledged that she wouldn't be ostracized from her church if she did receive a blood transfusion and was "truly repentant."

The constitutional implications of this case are difficult to discern because it falls in the shadow of two U.S. Supreme Court decisions 30 years apart that take different positions.

In the more recent case from 1990, the high court decided that the government could adopt laws that might burden someone's religion as long as the law was neutral and didn't target a specific faith.

The case focused on two Oregon men who were denied unemployment benefits. The men were fired from their jobs after they ingested peyote for sacramental purposes.

The court upheld the denial of the benefits in a decision that seemed to cast aside decades of precedent.

But Stinemetz's legal team cites a 1963 Supreme Court case in which the justices ruled that government needed a compelling state interest to justify infringing on someone's right to freely exercise their religion.

That case involved a member of the Seventh Day Adventist Church who was denied unemployment benefits after she was fired from her job because she refused to work on Saturdays. She couldn't find work elsewhere.

The state said she was ineligible for the benefit because she failed, without good cause, to accept a job when it was offered.

Stinemetz suffers primary biliary cirrhosis, a chronic disease that inflames the bile ducts in the liver and eventually causes them to disappear. When the bile ducts become damaged, bile accumulates in the liver, injuring the organ and causing it to deteriorate and malfunction.

The disease develops over time - Stinemetz has suffered it for 20 years - and its primary cause is unknown, according to the National Digestive Diseases Information Clearinghouse. A transplant is the only cure.

"I don't feel that great. I am very, very weak," said Stinemetz, who will not make the trip to Topeka for today's hearing.

As the disease has progressed, Stinemetz has rapidly lost weight, she's short of breath, her immune system is weakened, her abdomen is enlarged, and she has had a lung drained of fluid at least 13 times in the last 18 months. She has chills because she's anemic.

She moves slowly and spends a lot of time at home for fear of catching a cold.

In 2009, after Stinemetz learned she would need a liver transplant, she went to the University of Kansas Hospital for an evaluation.

She told KU physicians that she wouldn't accept a liver transplant that involved blood transfusions.

KU decided against moving ahead with any further work on the case and recommended she seek another hospital that might perform a blood-free surgical procedure.

The KU hospital doesn't perform bloodless transplants because its doctors don't think they're in the patient's best interest, said spokesman Dennis McCulloch.

Bloodless liver transplants have been only around for about a decade, and they are only offered at five to eight other hospitals nationwide and none in Kansas, said Jean Botha, associate professor of surgery at Nebraska Medical Center.

Botha conceded the surgery shouldn't be used routinely because the "safety is just not there." He said the surgery was done primarily to help Jehovah's Witness patients.

Meanwhile, Stinemetz and her husband, Merlyn, are vowing to fight on as long as their lawyers are willing. Yet Mary Stinemetz isn't sure how much longer she will live without a new liver, although it's probably not more than a couple years.

And she's not even on a waiting list for the organ.

"I'm just surprised I'm still here, to be honest with you," Stinemetz said. "As long as I'm in Jehovah's memory, I know I will be resurrected. I'm not afraid of dying by any means."

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