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Advocacy Liver Donor Living Donor Protections Living Donor Risks

Boston Globe Writes About Living Donor Paul Hawkes Death

[Note: To reacquaint yourself with the Paul Hawkes tragedy, scroll through the “liver donor” category, and/or search for Lahey and/or Paul Hawkes. Hawkes’ name wasn’t released to the public initially so the early coverage wouldn’t be found that way.]

Below is an excerpt. I encourage a full reading at the link below:

 
 

In July, Lorraine got an upsetting letter from the Massachusetts public health department, with the results of its inquiry the month after Paul’s death. Investigators said they uncovered no immediate quality problems at the hospital that led to the tragedy, which to Lorraine felt like they were saying it was OK he died. Even worse, the report mentioned Paul’s abnormal EKG and said Lahey surgeons were now asking whether “there should be a higher standard.’’ She began to wonder: Was there anything else she didn’t know?

Lorraine hired an attorney and requested Paul’s medical records, studying them late into the night. She became telephone friends with Donna Luebke in Ohio, a living kidney donor turned national advocate, who taught her how to search medical terms on a computer Lorraine kept next to her couch, under a gallery of photos of Paul.

Journal articles she found described a total of 13 to 21 donor deaths worldwide that researchers believed were related to the surgery. In her mind, that put a different spin on things. Lorraine read that the federal Medicare program requires transplant centers to provide independent donor advocates. Burns, who described himself as the donor advocate in Paul’s medical records, was listed on Lahey’s website as part of the transplant department.

She was angry with herself for not becoming better educated about risks before surgery, and at Lahey doctors, whom she felt did not protect Paul’s interests carefully enough. Many nights she e-mailed her lawyers at Lubin and Meyer in Boston until 2 or 3 in the morning, when she would finally collapse on the couch, her mind on fire. Then she would rise at dawn for her job as a school bus monitor for children with disabilities.

“Lorraine, we got this,’’ one of her attorneys eventually told her. “Get some rest.’’

She was also upset about what Paul’s records revealed about Tim’s illness. He had two tumors in his liver and one was relatively large, raising the chances of the cancer recurring after a transplant. It was big enough that he would not get priority on the New England waiting list for a deceased-donor liver. For patients with liver cancer, priority goes to patients who are most likely to live many years after surgery — and therefore make the best use of scarce organs.

Had Paul given his life for someone whose chance of long-term survival was compromised? Some studies have found that up to 70 percent of recipients with more advanced tumors are alive five years later, so Tim’s case was far from hopeless. Still, Lorraine believes she and her husband should have been given more information about Tim’s prognosis — and Paul’s consent form was silent on this subject.

Medicare requires transplant programs to provide “independent donor advocates’’ whose job is to protect the donor’s rights. But investigators, according to their report, saw one unnamed donor advocate attend meetings with the transplant team to discuss recipients. And when investigators asked one doctor, who said he was the donor advocate, how he protected the donor during the consent process, he replied that he tried to make sure the donor was not acting under duress, but that consent was the surgeon’s responsibility.

The hospital was also cited for not including recipient survival data in donor consent forms, including one signed by a donor on March 18, 2010. This was the day Paul signed his form, although the report does not provide the name of the donor.

The hospital and the organ network would not release results of their reviews, but a combined state/federal government investigation in 2010 cleared Lahey of any wrongdoing in Paul’s death. Yet during a more comprehensive evaluation of the liver and kidney transplant programs at the hospital later that year, investigators uncovered violations of Medicare rules in how the hospital obtained consent from living donors.

 
 

http://www.bostonglobe.com/lifestyle/health-wellness/2014/02/02/death-living-liver-donor-calamity-for-two-families-and-lahey/q9iRF9nHyQdewWjvlTgmRI/story.html

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