After hospital's silence, man loudly protests privacy law

By Carol M. Ostrom
Seattle Times staff reporter

	KEN LAMBERT / THE SEATTLE TIMES Stuart Hunt is campaigning to change federal medical-privacy rules that took effect last year.
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Hunt, who lives in Stanwood, quickly called the hospital, which refused to give him any information, even though he had taken his mother there many times.

"It's because of HIPAA," he recalled being told, hearing for the first time the acronym for complex federal medical-privacy rules that took effect a year ago.

For Hunt, the 29 hours he spent frantically trying to learn how badly his mother was hurt began a transformation: He became a man obsessed.

But obsessed, say some observers, with a worthy cause: changing HIPAA, shorthand for the Health Insurance Portability and Accountability Act, a mammoth federal law proving to have unintended consequences for the patients it was enacted to protect.

Developed to stop unauthorized disclosures of personal medical information, HIPAA can make it difficult for people to learn anything about sick or injured family members who can't approve such a release, particularly in emergencies.

For families, negotiating the system can be frustrating, because each hospital handles requests for information differently and much depends on how individual medical workers interpret the law.

"I think there's inconsistent understanding of this law, not just in Washington, but everywhere," said Cassie Sauer, spokeswoman for the Washington State Hospital Association. Penalties up to $250,000 and jail time can put a damper on the discretion the law allows a medical provider, she noted. "It's a big law, it's a complicated law. ... And there's the worry that if you break the law, you could get in real trouble."

Search for answers

Dealing with the health rules The Health Insurance Portability and Accountability Act of 1996 was designed to protect patients' medical privacy, particularly information kept electronically. It allows patients to inspect and correct medical records, and levies fines against medical providers if they disclose information without permission. But, experts say, HIPAA can also thwart families trying to get information about loved ones in an emergency. While some hospitals take a permissive approach, assuming that patients who can't communicate would want family members to know their condition, others do not. And while the law gives medical providers discretion to disclose information in a patient's best interest, that can be difficult for providers to determine. Patients and their families should take steps to ensure they have access at critical moments: • Make sure you have a Durable Power of Attorney for Health Care for anyone for whom you might have to help make health-care decisions. HIPAA regulations say a general Durable Power of Attorney is not sufficient. The Washington State Hospital Association and Association of Public Hospital Districts have sample forms at www.awphd.org/EndOfLife/manual/2.asp#4; choose "Sample Advance Directive Forms." • A Durable Power of Attorney for Health Care is particularly important for unmarried partners, both same-sex and opposite-sex, who have no legal standing to make decisions. • Power of attorney is also important when there is any family conflict; for example, if you have several siblings but want only one to make your health-care decisions. • Don't lock the power of attorney away in a safe-deposit box. Think about the scenarios: Your partner is hit by a car or has a stroke. Are you going to be able to prove quickly that he wanted you to have access to medical information? And vice versa. The best place to keep it is an unlocked, fireproof box in your home. • If you have identified a hospital where your family member or friend likely would be taken in an emergency, ask if you can "register" to clear up access questions ahead of time. Be aware, however, that the registration likely could expire and wouldn't be "portable" from hospital to hospital, despite the law's name. — Carol M. Ostrom

Hunt's efforts to learn about his mother that day last August took on epic proportions as he entreated, argued and waited anxiously for his calls to be returned. The next afternoon, hearing second-hand that his mother was going into the operating room, he tossed a change of clothes in the car and sped to Longview, a 3½-hour trip, arriving as she came out of surgery for a broken ankle.

"My mom went through the whole thing alone, at age 91, and it was completely unnecessary," said Hunt, 56, a retired high-school teacher. "I could have been there."

Grace Hunt died seven weeks after her hospitalization, four days after her 92nd birthday.

For Stuart Hunt, his mother's death only sharpened his resolve to wring answers from the bureaucracy that created and enforces HIPAA.

What if he'd been traveling and unable to get to the hospital? What if there were immediate life-and-death decisions? How could he prove his identity on the telephone? What if he didn't speak English?

And most important: How can an ordinary patient or family learn how to navigate HIPAA?

He began hounding federal agencies and politicians. Some pointed him to Web sites, where he found few answers. When he spoke with officials, their answers differed.

Hunt got angrier and angrier. "What kind of a government doesn't answer questions about the problems THEY created? THIS ONE," Hunt noted in one of his multicolored e-mails, typically many pages long, with multiple attachments and peppered with capital letters and large type.

"WE HAVE BEEN COMPLETELY SHUT OUT of the ability to care for our loved ones if we can't get to them in a hospital, and to make INFORMED decisions for ourselves of what to do," he wrote.

Today, in his continuing effort to change the law, Hunt is hosting a closed three-hour forum on HIPAA at the University of Washington HUB. He hopes those attending, who include a doctor, a health administrator and representatives of the state's U.S. senators, Patty Murray and Maria Cantwell, will brainstorm solutions.

"Why must I as a citizen have to do this research to find some basic answers?" Hunt asked, quickly answering his own question: "Someone must get the ball rolling."

'He's a force'

Those who know Hunt describe him as the perfect "someone." A former school-choir director who began a private choir, he is dedicated and intense, friends say.

"He's a force," said a childhood friend, Dr. Richard Kirkpatrick, former University of Washington student-body president and Longview internist, who will speak at today's forum.

Hunt has gone crossways with school administrators when he knew he was right, Kirkpatrick said, and hatched out-of-the-box schemes to raise money to take his choirs around the world.

Kirkpatrick said Hunt comes by his tenacious tendencies naturally. Grace Hunt ran her own beauty salon until she was 90; Hunt's father packed and paddled boatloads of materials years ago into isolated Spirit Lake near Mount St. Helens, building a showcase YWCA camp.

On the issue of HIPAA, "Stuart is a zealot," Kirkpatrick conceded. "But sometimes one person who makes it their thing can achieve pretty amazing things. You've got to have someone out there getting the ball rolling. He's just trying to make life easier for others who might be in the same position."

Another search for answers

Washington State Hospital Association President Leo Greenawalt was one of those. On a Friday night late last year, he got a call from his father's neighbor in the small Pennsylvania town where Greenawalt grew up, telling him an ambulance had taken the 88-year-old away.

Alarmed, Greenawalt called the town's only hospital. No one would give him any information except to say his father was in intensive care. The nurse in charge told him government regulations prohibited her from telling him how his dad was doing, what was wrong with him — or even the name of the treating physician. Despite assuring her he knew HIPAA rules well — the hospital association helps train hospitals — Greenawalt made no headway.

Greenawalt finally made an end run around the system through a well-connected friend from high school, who reported back on his father's condition. And then he booked a flight.

The experience left Greenawalt shaken. "The rules and regulations are so intrusive, and the threatened penalties so great, that it is surprising physicians and nurses can deliver any care at all."

PeaceHealth Saint John Medical Center in Longview, where Grace Hunt was treated, was too conservative in its interpretation of HIPAA and has acknowledged that to Hunt, said Alice Becker, senior associate general counsel for PeaceHealth. Becker said the hospital has changed its procedures, but didn't specify how. "I don't think we would feel comfortable in giving you that information at this time," she said.

Hunt notes that there is no penalty for workers who improperly refuse to disclose information to family members.

By the time he finally talked with someone about his mother's condition, he was in the car and his mother was headed for surgery.

Tough choices for providers

Kirkpatrick said HIPAA has created "enormous problems" for families, doctors and others.

Often, he makes a difficult choice: Do what's best for his patient — and risk a huge fine — or follow the law, with huge misgivings.

An example is an older male patient who was in the throes of progressive dementia. Under HIPAA rules, Kirkpatrick said, he can't talk to the man's wife about his condition. "I can't even acknowledge he's a patient here without written permission from him," he said.

Another example: A patient on blood thinner whose blood test came back late on a Friday. Her dose was too high, according to the test — a dangerous situation — and she needed to stop the medication immediately. Kirkpatrick called her house, and her husband answered, saying she wouldn't be home until late. Nothing in the chart gave Kirkpatrick permission to talk to the husband; even if there had been, how could he prove the man wasn't an impostor?

"I broke the law," the doctor admitted. "You know, I guess I'd rather break the law than have her have a brain hemorrhage."

Hunt hopes the forum will help Murray and Cantwell push to change the law. In a statement, Cantwell said she hopes for suggestions on how to balance the "competing needs" of an individual's right to privacy and the concerns of families seeking access.

After months of communicating with the HIPAA privacy-outreach adviser from the federal Office of Civil Rights, Hunt received an e-mail Thursday evening saying the agency wouldn't attend today's forum.

Hunt wrote back. He has realized, he said, that his government "HAS NO ANSWERS and that it just wants me frustrated and to go away." He added: "That isn't going to happen."

The adviser's response: an automated message informing Hunt she would be gone for two weeks.

After seven months, "I have lost all tact," Hunt said.

"I have not gotten one answer to one question in this whole time," he added. "Just give me one answer and I'm out of your face."

Carol M. Ostrom: 206-464-2249 or costrom@seattletimes.com

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