Nothing I read in the Globe is funny anymore. Sorry.
"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 | Globe Staff, February 02, 2014
The night before his surgery, Paul Hawks knelt with his wife and prayed, putting his life “in the hands of Jesus.” At the hospital the next morning, Lorraine kissed him goodbye just after sunrise and settled in for the long wait.
A nurse walked out with the first news after lunchtime. Paul’s blood wasn’t “coagulating” properly — he was bleeding. She assured Lorraine that doctors were “getting it under control.’’ In reality, a desperate crisis was about to unfold inside OR 10 at Lahey Clinic in Burlington.
Nurse Denise Morin returned three times, Lorraine recalled later. Trying not to be overheard, Morin inched so close that the women’s knees touched as she softly described an irregular heartbeat but provided few other details. Lorraine’s stomach knotted in dread, and when Morin eventually led her and her family to a remote conference room, Lorraine began to weep, aware only of the nurse’s heels clicking on the tile.
Paul was having surgery not because he needed it, but for doctors to transplant part of his liver into Lorraine’s brother-in-law, who had been diagnosed with liver cancer. As doctors and nurses in fresh white coats filled the room, she knew something very bad had happened.
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.
In that instant, Lorraine’s world shattered. The Hawks, married for 35 years, had big plans. Now they wouldn’t be building a new home in Tampa that summer, starting a small Christian ministry, or taking their road trip to North Carolina’s Black Mountains.
Worse, in the coming months, her trust in everyone, from the doctors to her sister, would be shaken.
Lorraine had given little thought to the possibility that her 56-year-old husband could die during the operation on May 24, 2010. Lahey doctors had assured Paul that only two donors — out of more than 4,000 — had died in the United States in the two decades since livers began being transplanted from living people. But over the next agonizing months, Lorraine would learn of more donor deaths overseas and conclude that the risks to Paul were greater than she had thought.
She would wonder whether the transplant team, intent on saving her brother-in-law, Timothy Wilson, failed to focus enough on her husband’s safety. And she would question whether Paul and she had been given enough information about Tim’s illness and the chances the transplant would succeed.
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.
The death has led surgeons at some programs to more vividly describe the dangers of liver surgery to potential donors and has exposed the ethical quandaries involved in putting one person at risk to save another. Can a hospital fully protect both recipient and donor, whose needs can sometimes diverge?
An outside agency advocates for families considering donating the organs of deceased loved ones. But it has little to do with living donors, whose selflessness amid a chronic organ shortage has saved thousands of lives.
In the three years before Paul’s death, the United Network for Organ Sharing, the nonprofit that oversees transplants under government contract, failed to adopt rules to protect living donors that satisfied federal officials. Policies being considered could have strengthened requirements that hospitals provide donors with their own advocate independent from the transplant program and directed them to disclose certain medical information about recipients. Would these measures have changed Paul’s decision to donate? No one will ever know.
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....
*****************
Four hours into Paul’s surgery, at 12:45 p.m., the surgical team began cutting out the final portion of the liver’s right lobe, according to a report from government investigators, which was obtained by the Globe through a freedom of information request. Suddenly, a vein tore partially away from the large vena cava, a key blood vessel that is attached to the liver. Doctors pressed on the torn tissue to stanch the bleeding and urgently called other surgeons for help.
As they tried to clamp shut the smaller vein, it ripped away entirely, and blood gushed from the opening. Surgeons stitched the hole in the vena cava, but then bleeding erupted from another place on the large vein.
Unable to see the new tear clearly because the right lobe was in the way, surgeons went ahead and removed this part of Paul’s liver, which was already almost completely detached, according to the report. It was rushed next door, where surgeons began sewing it into Tim....
***********************
At least, Lorraine thought, Paul had saved his life.
A sense of betrayal
At Paul’s funeral at Bethel Church a week later, the hundreds of mourners included officers in full dress uniform from the Tampa Police Department, where Paul was on the auxiliary force, and his co-workers from the Florida Department of Transportation. Pastel roses blanketed the top of his casket, while the ashes of Festis, his dachshund who had died several days earlier, were tucked inside. His dobro — he loved to play bluegrass — rested on the altar.
Pastor Mike Tedder read a letter Paul had written to Tim and Susie shortly before the surgery. He thanked them for putting him up at their Pelham, N.H., home during his medical evaluations, “some of the best-cooked home meals I’ve ever had,’’ and “walks and talks’’ with Susie.
Tim had yet to be released from Lahey, so the Wilsons could not attend the funeral, but Tim sent a brief note through a relative. “Not a day will go by for the rest of my life that I won’t remember this sacrifice,’’ an uncle read through tears.
In the following months, Lorraine plunged into depression and her health deteriorated. Inside the rust-colored bungalow she and Paul had bought as newlyweds in 1975, she seethed with a sense of betrayal because Tim continued to get medical care at Lahey. The Wilsons, she felt, should have shunned the hospital after the tragedy. She painted an angry self-portrait, her teeth bared and her eyes circled in black.
Susie declined to be interviewed for this story.
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.
Would it have changed Paul’s decision? In retrospect, Lorraine believes it might have....
****************
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....
*******************
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.’’
Grief repeated
In April 2011, Susie called Lorraine at home in Tampa. Tim had gone back in to Lahey, but he was so sick he was headed home with hospice care, Lorraine recalls Susie telling her. If Lorraine wanted to see him, she should fly up immediately. Lorraine did, while Paul’s church prayed for his recovery.
“We had good talks about our childhood and school,” Lorraine said. “He was sorry he had Paul as a donor, and asked me to forgive him. I told him it was okay.”
“It wasn’t okay that my husband died,” she added. “But that’s not what you say to a dying man.’’
Struggling with increasing symptoms of multiple sclerosis, Lorraine headed back to Tampa for a doctor’s appointment. About 5 a.m. on May 2, 2011, Susie called to say Tim had died, she recalls. “It was sad,’’ Lorraine said. “It was just like Paul dying again.’’
She couldn’t bring herself to attend the memorial service in New Hampshire that summer.
A year later, in May 2012, Lorraine’s attorneys filed her lawsuit in Middlesex Superior Court, seeking unspecified monetary damages.
That fall, Lorraine and Susie, both grieving, had an angry exchange over the telephone. Lorraine said Susie told her that Tim had never been on the wait list for a deceased-donor organ. Lorraine and her family were surprised, because she assumed Paul was just a backup in case Tim did not get a liver that way. She slammed down the phone in tears and fury. They haven’t spoken in about a year.
Lorraine said she is “saddened by the rift in the family,’’ but prays that Paul’s death will lead transplant programs to be more protective of donors. Some day, she hopes, she and Susie will have healed enough to repair their relationship.
Wow, the end of that story sucked.
--more--"
Related: Research increasingly links dietary supplements to liver injuries
"Gov’t to keep ban on paying bone marrow donors" by Lauran Neergaard | Associated Press, November 28, 2013
WASHINGTON — Could paying for bone marrow cells really boost the number of donors? The Obama administration is taking steps to block a federal court ruling that had opened a way to find out.
Buying or selling organs has long been illegal, punishable by five years in jail. The 1984 National Organ Transplantation Act that set the payment ban did not just refer to solid organs — it included bone marrow transplants, too.
Thousands of people with leukemia and other blood diseases are saved each year by bone marrow transplants. Thousands more, particularly minorities, still have trouble finding a genetically compatible match even though millions of volunteers have registered as potential donors under the current altruistic system.
A few years ago, the libertarian Institute for Justice sued the government to challenge that system. It argued that more people with rare marrow types might register to donate — and not back out later if they were found to be a match — if they had a financial incentive such as a scholarship paid by a nonprofit group.
Ultimately, a panel of the US Court of Appeals for the Ninth Circuit ruled that some, not all, marrow donors could be compensated — citing a technological reason. Years ago, the only way to get marrow cells was to extract them from inside bone. Today, a majority of donors give marrow-producing cells through a blood-filtering process that’s similar to donating blood plasma. Because it is legal to pay plasma donors, the December 2011 court ruling said marrow donors could be paid, too, as long as they give in that newer way....
Not so fast, says the Obama administration. The government now has proposed a regulation to keep the ban intact by rewriting some legal definitions to clarify that it covers marrow-producing stem cells no matter how they are derived.
‘‘It is not a matter of how you obtain it,’’ said Shelley Grant of the Health Resources and Services Administration’s transplant division. ‘‘Whether we obtain them through the marrow or the circulatory system, it is those stem cells that provide a potential cure.’’
The proposal is open for public comment through Monday.
‘‘Should we be paying for parts of people’s bodies which then can be used to help other people?’’ said Mary Ann Baily, a Hastings Center fellow who has long studied the question of transplant compensation. ‘‘We’ve been very reluctant to do that partly because it’s a very messy thing to do and to manage so that bad things don’t happen,’’ such as exploiting the poor.
--more--"
Also see:
One-Day Wonder: Israel's Organ Harvesting Operation
Boston Globe Can't See the New Jersey Shore
Boston Globe Censorship: Cutting Out a Kidney
The Body Snatchers of Israel
Israel Admits Organgate
Israelis Operate in South Africa
Haitian Organ Grinder Found in Vermont
MSM Monitor Missed Bosnian Movie
I'm sorry these are the sorts of things I think of when I see transplant stories in my jewspaper, folks. Makes me want to stay the hell out of any hospital in Massachusetts, I'll tell you that.
