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Author Topic: [Liver] Donor’s death [in 2010] shatters family, stuns surgeons  (Read 3198 times)

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Offline Clark

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

Donor’s death shatters family, stuns surgeons
Pure generosity drove Paul Hawks to donate part of his liver to his desperately ill brother-in-law. Then disaster struck, and transplant medicine has had to rethink its rules.
By Liz Kowalczyk

...

Dr. Elizabeth Pomfret, who had removed about 60 percent of Paul’s liver, knelt in front of her and apologized. Lorraine noticed that her eyes, too, were swollen and red. “I tried so hard to save him, Lorraine,’’ she said.

...

Paul’s death was a shocking calamity for Lahey, too. Its highly skilled surgeons ran the country’s busiest living liver donor program and had never lost a donor. Government investigations found no errors that led to the death, but Pomfret, a widely respected leader in the field, told colleagues that she and the hospital later considered shutting down the renowned program.

Lahey officials and Pomfret declined to be interviewed, citing a malpractice lawsuit Lorraine has filed.

...

Next month, the organ-sharing network plans to release a new set of proposed policies to protect all living donors. Pomfret helped devise them, no doubt with Paul Hawks’ death on her mind. Lorraine agreed to tell her story to bring attention to donor safety concerns.

...

At Lahey Clinic, the questions began an hour and 29 minutes after Paul’s death, during a “team huddle’’ of operating room staff. The hospital suspended its living liver donor program that day and ordered internal and external reviews. In the weeks that followed, state and federal investigators as well as those from the national organ network conducted their own inquiries.

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.

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 told federal officials it had since appointed a social worker from the hospital’s behavioral medicine department to serve as a living donor advocate, as well as significantly strengthened its informed consent procedures. And it has purchased a second rapid-infusion blood pump.

Pomfret defended living liver donations to colleagues at a conference in January 2011, eight months after Paul’s death, saying that many recipients go on “to have lives they would not have had otherwise.” But when something goes wrong, she said, “the potential price that you pay is huge . . . The [donor’s] family suffers the most in all of this. But you can’t begin to know the consequences on the team and for you at a personal and professional level. It’s extraordinary.’’

Lahey “went full circle’’ on whether to restart its program “and I did personally as well,’’ she said, according to a recording of her remarks. But ultimately, Pomfret said “it was really very moving to me’’ that many transplant patients and donors “wrote me personal notes and letters saying this is a horrible thing that has happened, so sorry to hear this, but please don’t stop what you’re doing.’’

Lahey is no longer the busiest living liver donor program in the United States, according to the organ network website. Since 2010, several programs have surpassed it. At its height in 2006, Lahey transplanted livers from 32 live donors. Last year, it transplanted eight.

More education for donors

Eight years before Paul’s surgery, another liver donor’s death had shaken the transplant community. After Michael Hurewitz died in 2002at Mount Sinai Medical Center in New York, live donations plummeted nationally and the US Department of Health and Human Services ordered the transplant network to adopt rules to protect living donors.

The United Network for Organ Sharing proposed safeguards, but surgeons and others criticized them as too dictatorial. So the network instead adopted voluntary recommendations in 2007 and 2009. The federal government said that was unacceptable; the transplant industry needed policies that everyone would have to follow.

In April 2010, the organization decided to try again. This time it brought in more leading transplant surgeons and transplant coordinators to help develop the policies, first for living kidney donors and then, in 2012 for living liver donors. Pomfret was elected to head the latter effort.

“We went back to find consensus,’’ said Dr. Christie Thomas, chairman of the organ network’s living donor committee. Just as the effort started, another donor, Ryan Arnold, 34, died four days after donating part of his liver to his brother in Denver in August 2010.

The recommendations developed by Pomfret’s group required that the risk of death — 1 to 5 donor deaths for every 1,000 transplants — be spelled out to potential liver donors. They say donors should be told that recipients may have risk factors for increased mortality and complications that are not disclosed. Surgeons also must determine if a donor has anatomical abnormalities, and whether those present safety issues for the donor.

The wider transplant community requested revisions. While the proposed policy Thomas’s committee plans to release in March includes similar language about undisclosed recipient risk factors and donor anatomy, he said the committee removed the specific numbers on the risk of donor death because no one could agree on the right numbers.

The public will be able to comment on the proposal, which the organ network provided to the Globe, and request changes.

Pomfret’s group also provided additional guidance to programs, which is not enforceable, Thomas said. These guidelines say programs should provide donors “a realistic estimate of the likelihood of success for transplantation for the recipient,’’ and disclose factors that increase the recipient’s risk of death or complications — if the recipient agrees to share the information.

Doctors, Thomas said, must weigh the donor’s right to know with the recipient’s right to privacy.

Lorraine says the rules need to go further, requiring programs to disclose everything that is known about donor deaths and the recipient’s health. She believes donors can truly be protected only if they are evaluated at a separate hospital.

Thomas said transplant surgeons hope the new rules will bolster the public’s trust in living donations. The number of live liver donations dropped from a high of 524 in 2001 to 219 in 2009. The numbers began to pick up in 2010 and then fell again, a drop that some surgeons attribute to the deaths in Burlington and Denver.

But Dr. Giuliano Testa, surgical director of living donor liver transplantation at Baylor University Medical Center in Dallas, said too much focus on donor deaths, still a rare occurrence, will cost lives because transplant candidates will die waiting.

“Bad things happen all the time. They should not take center stage with the discussions we have with the donors,’’ he said. “Once you have all the regulations in place and follow all the rules and you select the donor well, you still cannot totally control unforeseen events like the one that happened at Lahey Clinic.’’

Dr. James Markmann, chief of transplantation at Massachusetts General Hospital, said the donor deaths in 2010 have already changed the discussion doctors there have with potential living donors.

“You can quote 1 in 1,000 people will die and they think it’s not going to happen to me because it’s such a small number,” he said. “If you say two people died in last few years, then it’s a real possibility. It helps satisfy the need for informed consent and helps make it real for them.’’

Pomfret has continued speaking internationally and publishing papers about donor safety, ethics, and risks. She has advocated for better tracking and disclosure to potential donors of “near misses.’’

In late 2012, she spoke to a group of surgeons in Michigan about the ethics of using a living donor for patients who have more advanced liver cancer. Surgeons, she said, must constantly balance the risks for the donor against the potential benefit to the recipient. She gave the example of a husband who wanted to donate to his 45-year-old wife and mother of their three children. In a situation like this, she argued, it is acceptable.

Not everyone agreed. One attendee said he was uncomfortable jeopardizing a donor’s life for recipients with larger tumors, saying, “I am not even sure going to Afghanistan in the Army is as high a risk as this.’’

...

Unrelated directed kidney donor in 2003, recipient and I both well.
620 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline Clark

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Re: [Liver] Donor’s death [in 2010] shatters family, stuns surgeons
« Reply #1 on: February 03, 2014, 10:58:20 AM »
It was my privilege to serve as a living donor public representative to the OPTN/UNOS board of directors during the time that this tragedy occurred. I made a motion at the end of the next board meeting, during new business, to have the UNOS president be our representative and formally acknowledge the tragedy. I made my case as best I could, and the debate was among the most passionate during my tenure. The motion eventually passed, significantly amended. From my initial remarks and throughout the debate, my explicitly stated compassion for the emotions of the surgeon and transplant team caught the surgeons on the board by surprise. I did not know at the time that we were discussing Dr. Pomfret, with whom I had already had several excellent conversations about donor advocacy. I learned this later, and have been able to express my condolences.

In the years since, her professionalism, practicality, and deeply held belief in effective, progressive improvement of practice have aided significant changes for living donor OPTN policies. She may be bound by confidentiality in the particulars of this case, but she, from early on afterwards, engaged her team, her institution, and national colleagues and the ongoing national living donor public policy debates.

Even the best can be overcome by the unexpected development. Only the very best can rise above such tragedy achieve meaningful beneficial change.

In the early years after our surgeries, my kidney recipient was have a challenging time with the impact of her medication regime on her liver. I offered to be her liver donor, should it come to that. It hasn't, but should it ever, I would seek out Dr. Pomfret as my first choice to be my surgeon.
Unrelated directed kidney donor in 2003, recipient and I both well.
620 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

 

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