Lloyd's Law
By Sarah Seltzer
The day that Carol Rinzler and Perry Luntz lost their son Lloyd, all they knew about his condition was that he had been admitted to the hospital with a broken arm. Because he was an adult living in Philadelphia, and hadn’t signed a medical proxy form, the staff at the hospital didn’t feel comfortable telling his parents or siblings about his condition--which turned out to have been cancer.
"We called the hospital and they said 'he's been admitted, thank you and goodbye,'" Luntz recalls.
Today, they are turning their sad story into action, with the help of lawmakers, in order to try to modify medical privacy laws in cases like Lloyd’s. Instead of a blanket privacy rule, the idea would be to have a healthcare representative, or surrogate, determined by a specific process, who would make informed decisions for patients who can’t do so themselves.
Luntz and Rinzler learned that the Pensylvania privacy laws had changed in the intervening months, but the New York ones were still on the books. So they set out to reach out to their community.
"What happened to us not an unusual thing," says Luntz. "We were concerned about young people flooding into New York, with parents everywhere." They worried that, as in their situation, parents might not be able to make choices with the speed required by urgent medical conditions.
The couple contacted local papers and legislators, and were pleased with the positive response they received.
State Senator Tom Duane said that he "was very moved when Perry Luntz and Carol-Ann Rinzner reached out to me about their adult son and the tragedy of his death. Long-term if we save any lives as a result it’s certainly worth passing in the legislature."
Duane, Assembly member Richard Gottfried, and congresswoman Carolyn Maloney are spearheading parallel efforts at reform in their respective legislative bodies.
"Health care people always want to do right for their patients," said Duane. "But we want to make it easier for them to do that or have no misgivings at all from a conscience or legal perspective."
Duane explained that current Health Insurance Portability and Accountability Act (HIPA) laws, meant to protect patients from employers or others seeking their medical history, can be interpreted too conservatively as currently written, because they contain the vague phrase "reasonable circumstances."
As they researched the matter, Luntz says they realized that the original HIPA bill, "was meant to prevent people with AIDS or mental illness fro being stigmantized.
"It’s a laudable intent," he said. "But people who don’t want to hide their condition can have it hidden by those afraid to talk."
In today’s litigious climate, doctors are naturally cautious about releasing information unless specifically legally allowed to. And the "reasonable circumstances" phrase may not be clear enough for some.
That's why the bills introduced by Duane and Gottfried aim to bring a level of specificity to the proceedings--a detailed procedure to follow if the patient has not signed a proxy. For instance, a spouse or domestic partner would have priority over a parent, who would have priority over a close friend. This representative, or surrogate, would make decisions in the patient’s best interest until the patient regained decision-making ability.
"Every year tens of thousands of New Yorkers are at the end of life without the benefit of a family member being allowed to make healthcare decisions," said Gottfried, who noted that New York and Missouri have the most restrictive laws on the books. "The bill would give health care professionals a family member to turn to for decision making."
Gottfried and Duane’s offices are confident about the effort’s future--it has already passed in the assembly and is currently in Senate committee. Jonathan Bing, the assembly member for Luntz and Rinzler’s East Side Neighborhood, signed on as a co-sponsor.
As for Luntz, he says that he and Rinzler, both writers, have always been active in matters of public interest and will continue to be.
"It's not a selfish thing," he said. "Hopefully our misery is over and this can be a lesson to all of us."
He recalls the way Lloyd, who was an antique dealer and artist, was willing to reach out to others by teaching English classes in poor neighborhoods or painting public art.
"This is a matter of honor and love," he said. "He was an outstanding young man."
Our Town and West Side Spirit Newspapers, p. 1 | May 17, 2007