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.
Paul was the generous-spirited guy who’d driven elderly worshipers to and from church and fixed air conditioners for friends for free while postponing repairs on his own home. He wanted to show Tim love and generosity the way Jesus would, he told her. And while he was worried about post-surgery pain, he never wavered.
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.
Paul had always done a lot for his wife: he cooked, cleaned when her multiple sclerosis flared, and planned the wheelchair-friendly house they wanted to build before her disease worsened. Lorraine, who turned 57 on the day Paul died, was suddenly on her own for the first time since she was 21.
Lahey wanted to arrange the return of Paul’s body to Florida and pay for the funeral at the evangelical church where he had been saved in 1989. Lorraine, in her first major decision as a widow, said no.
A selfless choice
Six months earlier, Lorraine and her family had just finished Thanksgiving dinner at the Cracker Barrel off Interstate 275 in North Tampa when her cellphone rang. Susie, her younger sister, was calling from New Hampshire, and she was crying. Lorraine stepped outside, past the Santa ornaments and balsam-scented candles.
Tim, ill with end-stage liver disease, had recently been told he had liver cancer. Susie said her husband needed a transplant. She was worried he would die waiting for an organ from a deceased donor, Lorraine remembers. Back at the table, Lorraine shared the terrible news.
Susie had not asked for help, but Paul volunteered immediately. “Well, I’ll get tested,’’ he said.
Paul and Tim were not especially close. They were both quiet men married to gregarious sisters, but otherwise had little in common. Tim was a technology specialist at Raytheon. Paul was an electrician. Tim loved to water ski, while Paul’s family can’t recall ever seeing him in swim trunks.
Lorraine and her six siblings had known Tim since kindergarten in the Tampa suburbs. But she hadn’t met Paul until after high school graduation, in 1973, when she became the receptionist at Hawks Refrigeration and Air Conditioning, which Paul owned with his father.
Lorraine was drawn to his Tom Selleck good looks and calm reserve. They were opposites that sparked. Meanwhile, Tim and Susie married and settled in New Hampshire. The families saw each other once every year or two when the Wilsons visited Florida.
Still, Lorraine wasn’t surprised at her husband’s snap decision. He was the generous-spirited guy who’d driven elderly worshipers to and from church for nine years and fixed air conditioners for friends for free while postponing repairs on his own home.
He wanted to show Tim love and generosity the way Jesus would, he told her. And while he worried about post-surgery pain, he never wavered.
Lab tests determined that Paul’s blood type matched Tim’s, a key initial step for identifying a suitable donor. Paul flew to Boston in February for the first of five visits, undergoing an array of physical and psychological exams at Lahey, including CT scans, cardiac tests, and a liver biopsy. Morin, the transplant coordinator, Pomfret, surgeon Dr. Mohamed Akoad, and Dr. David Burns, a Lahey gastroenterologist serving as the donor advocate, discussed the risks — infection, poor liver function, even death. Caregivers assured him, Lorraine said, that Lahey had never lost a donor in more than 200 operations.
A social worker asked Paul why he wanted to donate part of his liver to Tim. It’s somewhat unusual for living liver donors not to be close relatives of the recipient, and ethically trickier. When the donor is a child, parent, spouse, or sibling, the recipient’s survival is more obviously paramount to them — and the donor’s acceptance of risk therefore more understandable.
According to his medical records, provided to the Globe by Lorraine’s attorney, Paul replied, “He means something; he’s family.’’
During his evaluation, doctors discovered extra blood vessels in Paul’s liver, but this anomaly, which can make surgery more difficult, was not enough to deter the hospital's highly experienced transplant team. Neither was his age; at 56, he was near the upper limit for a living donor. They spotted abnormalities on his electrocardiogram, but nothing that they felt warranted turning him away.
Lahey surgeons had transplanted portions of livers from more live donors than all but one other program. Incredibly, the two sections — the transplanted tissue and the portion of the liver left in the donor — have the capacity to regenerate into full livers.
Lorraine accompanied Paul to Lahey on May 10, and Pomfret met them at a reception desk and ushered them back to an exam room. Lorraine was impressed by her intelligence and poise.
“You have a very loving and generous husband,’’ Pomfret told her.
Desperate attempt to save a life
Lahey surgical staff prepared nearby operating rooms for Tim Wilson and Paul Hawks on the morning of May 24. They placed the hospital’s only Belmont pump in Tim’s OR. The machine quickly infuses warmed blood into a patient who is bleeding profusely, a danger Lahey caregivers later told investigators is more commonly faced by transplant recipients than donors. But not that day.
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.
Over two hours, as Paul’s blood pressure plummeted, surgeons worked feverishly to repair several more trouble spots. Staff carried in a cooler of blood from Tim’s operating room. Standing on both sides of Paul’s stretcher, they flooded his body with red blood cells and plasma, more than 70 units in all, according to investigators’ notes, about the amount of blood in seven people.
His blood pressure began to rise, but then his heart faltered. In desperation, doctors cracked open Paul’s chest and massaged his heart with their hands, trying to restart it. At 3:01 p.m., they gave up.
The first calls Lorraine made after Paul died were to their two sons, Gene and Joe,who had stayed in Florida. Paul had asked them to save their vacation time to help with his recovery. When Tim came out of surgery, Susie, weeping and distraught over Paul’s death, hugged her sister and left the conference room to be with her husband.
Two days later, before flying back to Florida with Paul’s body, Lorraine visited Tim in the intensive care unit. “I never wanted to walk through those doors again,’’ she said, referring to Lahey. But “I knew Timmy needed to see me and I needed to see him.’’ They cried together.
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.
No survival data included
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.’’
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.
Liz Kowalczyk can be reached at firstname.lastname@example.org.