The Silent Treatment

Because state law allows hospitals to keep their mistakes secret, James Williams may never know exactly how his wife went in for routine surgery and came out in a coma

At the hearing, Fairview's attorney, Rebecca Egge Moos, argued that the state's notes on the peer review are also protected under the law. Moos declined to comment for this story, but Van Bree stresses that Fairview is legally obliged to keep the peer-review data confidential. "We take the peer-review process very seriously, and we follow its intent. We have a much better understanding of how to better care," she says. And does the confidentiality help that process? "I think it does. It has worked that way." Fairview disputes portions of the state's report, Van Bree adds. Williams's accident was an isolated occurrence, she says, and even before the state began its investigation, hospital staff had undergone training to make sure it won't happen again.

Judge Sommerville has yet to make a ruling on the discovery motion. Until he does, the suit is at a standstill while Tilton waits to see if he can get access to those fresh details. A tentative trial date has been set for August. Tilton and Williams want to ensure that Sharon Williams's medical costs are taken care of for the rest of her life (on behalf of the Williams family, Tilton is negotiating with Fairview to have the company take over Sharon's medical expenses after her insurance runs out in April and up to the point of trial). James Williams says those costs are $93,000 per month. If the healthcare company doesn't pay, Williams adds, he could end up selling his house and liquidating his assets to continue paying for his wife's care.

Then there are the damages, for the suffering of both Sharon and her family. "They had a perfect life and [James Williams] wants it back. Short of that, I want assurances that she will be taken care of," Tilton says, pausing a moment to think before he continues. "What's it worth to have lost your lifelong partner?"

David Kern

What do you do when you have no power to help the people you love? Where do you put the pain, frustration, and anger? Even though you may feel helpless in the face of your own personal, untenable situation, perhaps you can turn the sorrow into something positive. Last fall Williams turned his focus to changing Minnesota's laws that allow hospitals to keep the circumstances of their medical errors secret. "God may be using your family to help so many other families," he tells himself.

Because the Williamses have been so active in the Twin Cities' African-American religious community, a group of black pastors took up the cause in support of the family. In October a group of 15 ministers held a press conference saying they wanted legislation to open up hospital records. Since then Williams himself has been organizing others to increase awareness of Sharon's situation and to make sure that her suffering is not in vain. It hasn't been easy to take his family's private hurt and turn it into a political cause, Williams concedes, but he was fed up with what he sees as Fairview's unwillingness to take responsibility for its mistakes.

"They forced us to make this public. This is a very private, painful matter," he says. His anger flares for a moment as he continues. "As much pain as we can inflict on them doesn't come close to the amount of pain our family has suffered for no reason."

With Tilton, Williams has cobbled together an odd assortment of allies, including lawyers, lobbyists, advocates for consumers and for people with brain injuries, and religious leaders, to form a grassroots group called the Citizens for Patients' Rights. The organization, still in its formative stages, has met a few times and plans to lobby during the 2001 legislative session to make Minnesota's laws more patient-friendly.

On behalf of the coalition, Joel Carlson, chief lobbyist for the Minnesota Trial Lawyers Association, is developing a strategy for introducing legislation that would amend the current law outlining patients' rights. Right now patients in Minnesota healthcare facilities have the right to, among other things, courteous treatment, appropriate care, privacy, freedom from mistreatment, and information about treatment. (The existing bill of rights should not be confused with much-publicized proposed legislation--on both the state and federal levels--that would make it easier for patients to sue health-maintenance organizations.)

"The concept we're embracing here is my right to know information about my care," Carlson explains. "We can try to amend the patients' bill of rights to make sure we have the right to know information about medical errors made against us." To that end, he has drafted a change to the existing law. Specifically, his proposal would add a provision requiring doctors to disclose "any medical errors which may have been committed in the diagnosis, care or treatment provided," as well as any medical and psychological consequences. The draft includes penalties for doctors who fail to provide such information.

The coalition has asked state Sen. Lawrence Pogemiller (DFL-Minneapolis), a Williams-family friend, to author the legislation. "Clearly there's an interest in addressing the issue of medical errors among legislators, especially when they hear compelling stories like the Williamses'," he explains.

Amending the patients' bill of rights would be a solid first step, Tilton says. "That's a realistic goal to hope for in the next year or two. That's a tremendous victory," he says. "But there are other impediments to a patient's right to know." He and Williams want the crusade to go even further, to overturn the law protecting peer-review data from outside scrutiny.

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