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Most liver donors in the United States have "open" surgeries with a long incision across the abdomen. According to medical records obtained by CNN, Paul had laparoscopically assisted surgery, a minimally invasive technique with three very small cuts.
The advantage of "lap-assisted" surgery is a much easier recovery for the patient. The down side, surgeons say, is if a patient starts bleeding it can be harder to find the source since they can only look through small incisions rather than a very large one.
"It's harder to see, especially if you're not used to doing this surgery," Luebke says.
Luebke told Lorraine she thought the Lahey surgeons might not have had much experience with "lap-assisted" surgeries on liver donors. The technique had only been used for a few years in the United States when Paul had his surgery, and some surgeons were trying it out for the first time.
"There's a steep learning curve," she says. "It's a different skill set than doing an open surgery."
Dr. Peter Pronovost, a patient safety expert at Johns Hopkins University School of Medicine in Baltimore, agrees.
"When a surgeon wants to try out a new surgical technique, they can just go ahead and do it," he says. "There's no rule saying you have to tell the patient you're taking out the liver in a different way and this will change the risk profile."
A spokeswoman for Lahey declined to say how many laparoscopic liver donor surgeries had been done at Lahey before Paul's operation.
A widow's regrets
Three months after Paul died, Ryan Arnold died after donating a liver lobe to his brother in Colorado. His death received a great deal of media attention, and the American Society of Transplant Surgeons released a statement.
"Living donor procedures are not without risk to the donor, even in experienced hands and programs," the statement read. "While attempts are always made to minimize donor risk, complications including death are always possible."
Now, nearly two years after her husband's death, after poring over the Department of Public Health report and her husband's medical records, Lorraine still wonders whether she could have done anything to keep from losing her husband on her 57th birthday.
She says there's one thing she knows she would have done differently. She had only enough time off work to fly from Florida to Boston for the surgery itself, so she wasn't there for Paul's pre-operative testing. He did that on his own.
"God, how I regret that," she says. "I would have asked a million questions."
Now she wonders if Lahey gave Paul all the information he needed to make a smart decision about whether to go under the knife.
An inspection seven months after her husband's death by the federal Centers for Medicare & Medicaid Services (CMS) revealed that Lahey violated several federal rules for informing and protecting donors.
Under these regulations, each donor is supposed to be told about how other organ donors fared after their surgeries, both nationwide and at Lahey specifically. Studying the records for seven liver donors, CMS found Lahey failed to provide all of them with the most current surgical outcomes.
Dr. Roger Jenkins, the chairman of surgery at Lahey when Paul died, agrees that the data wasn't as up-to-date as it should have been.
"It got caught in the paper shuffle that's part of the hospital's record keeping," he said.
The CMS report noted that Lahey was out of compliance in another area.
Transplant centers are supposed to assign a staff person, such as a doctor or social worker, to be an independent advocate for the donor. The donor advocate is supposed to take into account only the donor's concerns -- for example, in Paul's case, the abnormal EKG findings -- and not the concerns of the recipient, since sometimes there can be a conflict of interest between the two.
To make sure the advocate is focused solely on the donor, there's supposed to be a "wall" between the donor advocate and the recipient's team, but federal inspectors observed Lahey's donor advocate going on medical rounds and participating in meetings run by the recipient's team.
"This goes against [federal] policy," the inspectors wrote in their report. "Their roles were not clearly defined to ensure protection of the rights of living donors."
All living organ donors must...
... be fully informed of the risks involved in major surgery including pain, infection, blood loss, blood clots, allergic reactions, pneumonia and death
... complete a full medical/psych evaluation
... be assigned an independent donor advocate (IDA) who advocates for donor's needs, rights and interests
Source: United Network for Organ Sharing (UNOS)
Jenkins says he didn't know that the donor advocate wasn't supposed to attend meetings about the recipient.
"We interpreted the rules one way and the CMS reviewer interpreted them another way," Jenkins says. "There was certainly no intent not to comply with CMS regulations."
He added that it's not uncommon for hospitals to be out of compliance with CMS rules.
"If every center doesn't have at least one or two major out-of-compliance issues, that would be surprising to me," says Jenkins.
According to CMS, the hospital corrected the problems and was back in compliance with federal regulations about three months later.
'A very, very strong faith'
Lorraine knows she may never get all her questions answered about why her husband died that May afternoon.
She looks back on the day Paul made the decision to donate part of his liver with a mixture of sadness and pride. It was Thanksgiving Day, 2009, and they were at a Cracker Barrel in Tampa with their two grown sons.
During dinner, Lorraine's cell phone rang. When she answered the call and heard Susie crying, Lorraine excused herself to take the call outside.
When she returned to the table, Lorraine told Paul and their sons the bad news.
"Tim is ill, and if he doesn't get a liver donation, he'll die," she told them. Getting a liver from a cadaver was out of the question, she explained, since Tim was so sick he'd never live long enough to get off the waiting list.
"My husband in 30 seconds -- no, less than that -- said 'I'll get tested,' " Lorraine remembers." And then our son Joseph said he'd get tested, too. Nobody ever asked them to do it. They just did it."
Before Joseph could protest, Paul told his son he'd fly to Boston first to get tested first, and if he wasn't a match, then Joseph could try. That turned out not to be necessary, as the tests showed Paul was a "perfect match," Lorraine says.
Before Paul flew to Boston for the transplant, the couple's other son, Gene, saw his father off at the Tampa airport.
"We had lunch together, and then right there in the middle of the airport I hugged him, even though he wasn't a touchy-feely guy," Gene remembers. "I prayed for good surgeons' hands to do the right thing."
In retrospect, Gene wishes he had advised his father to get a second opinion from another doctor about whether he was healthy enough to give away 60% of his liver -- from a doctor who didn't stand to financially gain from the transplant.
But his family says before the transplant, Paul Hawks wasn't looking for advice. He was looking to do good. Being a living donor was just an extension of the goodwill he did in his regular life, they say, like helping elderly people in his church with their home repairs for free.
"He wanted people to see Christ in him every day with every interaction," Gene says. "At lunch that day, he told me he wasn't going to die, because it was low risk, but if he did he was prepared for it because he was going to heaven."
http://www.cnn.com/2012/04/08/health/cohen-donor-safety/index.html?eref=rss_health