The double doors into the operating rooms are about to open. The anaesthetist is wheeling John Cooper down the hall as his wife walks quickly beside the gurney, trying to keep up.
The couple has already said their goodbyes, whispered in the pre-dawn dark of their 23rd-floor hotel room. Cooper has told his two adult daughters that he loves them. They, in turn, have told their dad how proud they are of him.
There are no regrets. And yet this moment still seems to have come too soon.
As the anaesthetist ties on her mask, John and Deb grasp hands one last time. Deb leans down to kiss her husband. They look at each other and say a final “I love you.
Then, with another push, Cooper is gone, into the hands of a Toronto transplant team.
John Cooper does not need this surgery.
He is a completely healthy man, healthier, in fact, than most others in their late 50s and with everything — a loving family, a career he enjoys, a new home — to live for.
Still, he is about to do something few others would consider. He is going to donate a piece of his liver to save the life of someone he will never know.
It is an uncommon gift to a stranger, made even more remarkable by the fact that Cooper will get nothing in return.
If he lived in Boston or Vancouver or most other cities with large organ transplant centres, Cooper would not be allowed to make this donation. Doctors at those hospitals have deemed it too risky, a breach of their Hippocratic Oath, to put otherwise healthy individuals through this life-threatening surgery.
But at Toronto General Hospital, which has the largest program for anonymous live liver donors in North America, doctors believe they have a duty to accept donors like Cooper. They see too many people — about one out of every three — die while waiting for a liver. For them, turning Cooper away would be a betrayal of their oath.
If Hippocrates was here, he would say you have violated my first tenet of ‘do no harm,’ ” says Dr. Gary Levy, medical director of Toronto General’s multi-organ transplant program. “But in the grand scheme of things, in the bigger picture, we are doing good. We are preventing harm because we are saving a life.
Who are the people who want to give a portion of their liver to someone they do not know?
Are they different from you or me? Are they, as some in the medical community have suggested, psychologically unstable? Are they seeking celebrity, wanting to prove their moral superiority, or looking to do penance for past sins?
Or are they simply extraordinarily good people?
And if that’s the case, is it right to operate on them?
Live-donor liver transplantation has a 30 per cent risk of complications, with an estimated five out of 1,000 donors losing their lives. In the past nine months, two U.S. donors have died from the procedure.
Hospitals that do live-donor liver transplantation accept the risks when a donor is related to a recipient. A mother who donates to a son, or a husband who gives to his wife, are thought to benefit because they gain additional years with a family member and receive an emotional boost from saving a loved one’s life.
The medical community is less clear about what benefits — if any — anonymous donors get from the risky procedure. Many hospitals allow anonymous, live-donor kidney donation because the chance of things going badly is relatively small. But in the absence of a tangible advantage for live liver donation, most transplant teams have decided not to operate on people like Cooper.
Here in Ontario, a grievous shortage of organs from deceased donors has forced Toronto General’s transplant team to look for other ways to save lives.
Canada has one of the poorer organ-donation rates among developed countries. As of last year, only 17 per cent of Ontarians had registered to be donors, as compared to 30 per cent of people in the U.K. and 37 per cent in the U.S.
A report released Monday by the province’s Attorney General identified deficiencies in Ontario’s organ-donor system, including the lack of an on-line registry, that have cost lives.
People needing a liver face the second longest wait in Canada, after kidney. As of December 2009, the last year for which data is available, there were 532 adults in need of a liver. That same year 90 people died on the wait list.
The stark numbers and bleak outcomes compelled Levy and his team to take a bold step. Five years after the country’s first anonymous live-donor liver transplant, they are confident their program does everything possible to protect the safety of donors.
Still, questions remain. Among the most pressing: if more people in Ontario registered to be organ donors, would there be a need to put people like Cooper in danger in order to the lives of others?
John Cooper is not
the sort of person to seek the spotlight.
His favourite pastimes are of the quiet sort: reading a Bill Bryson book, exploring the waterways of Central Ontario in his small powerboat, going for evening walks with Deb and their schnoodle, Libby.
Fourteen months ago, Cooper, a communications specialist at the Ministry of Natural Resources, did not know it was possible to be a live liver donor, let alone that he would want to be a donor himself.
He first learned about it last November, when Deb telephoned his Peterborough office to tell him about something she had heard on CBC radio.
Richard Beamish, the show’s guest and a 53-year-old father of two, had explained that his only hope of beating a rare type of cancer was to have a liver transplant. Doctors said he would not survive the two-year wait for an organ from a deceased donor. Since none of his family or friends was a match, he was looking for a healthy adult with O type blood to give him a liver. If someone came forward, his family would be forever grateful.
His plea left Deb in tears.
I called John and told him what I had heard,” she recalls. “I said, ‘You’re type O. What do you think?
Four years earlier, the couple’s youngest daughter, Emily, had become seriously ill with autoimmune hepatitis, a condition in which a patient’s immune system attacks the liver. The Coopers were fearful that, at her sickest, their then-18-year-old daughter would need a liver transplant to survive. All of a sudden, an organ they had never once considered became the central focus of their lives.
Emily recovered, but John and Deb remembered their fear.
And John could easily imagine Beamish’s desperation. Wouldn’t he have wanted someone to step forward for his family?
Two weeks later, John applied to Toronto General to be a live liver donor. The decision, he says, just felt right.
It turned out Cooper was not the right match for Beamish. But doctors asked whether he wanted to donate to someone else on the list.
Deb says it didn’t take them long to decide John would continue with a donation. To them, it didn’t matter who received the gift — just that it would be given.
After you get involved, how can you say yes to one person and no to another?” she says.
Other than skin and bone, the liver is the only organ in the body that can regenerate. In a live-donor liver transplant, a surgeon removes a portion of a donor’s liver, about 20 per cent if the recipient is a child and up to 70 per cent with an adult. In both cases, the liver grows back to its full size in about six weeks.
Removing a portion of someone’s liver is far riskier than taking out a kidney, but it’s also the transplant that helps a recipient most. Dialysis can keep patients alive when kidneys stop working. There is no such equipment for a failing liver.
Liver transplant is a life-saving operation,” says Dr. David Grant, the surgical director of the multi-organ transplant program at Toronto General, who has done 400 live-donor liver transplants. “The others are life-prolonging.
Kevin Gosling, a product developer from Cornwall, Ont., was the first Canadian to give a portion of his liver to a stranger. He approached Toronto General in 2004, at the age of 46, and asked doctors to let him be an anonymous donor.
At first, the liver transplant team was unwilling. But after some thought and spurred by Levy, they reconsidered.
That year, 380 people in Ontario were waiting for a liver.
Could anonymous live-donor liver transplant be done safely and ethically? Levy thought so. And, if any hospital were to take it on, it would be Toronto General, which had done more live liver transplants than any other in North America.
The team took 18 months to explore the ethics, get advice from a host of experts, draw up safeguards and design an appropriate protocol. In some ways, the procedure was an extension of anonymous living kidney donation, which had recently become an accepted procedure by the transplant community. But the stakes were also higher.
The estimated mortality rate for live liver donation, at 5 in 1,000, is significantly greater than that for live kidney donation, which is just 3 in 10,000.
According to the handbook Toronto General provides potential donors, “Liver donation is associated with significant risks no matter how carefully the donor surgery is performed.
Unlike living donor kidney surgery, which is generally done using a keyhole technique, liver donation involves cutting open the abdomen since the surgeon must split the organ in two. Toronto General’s handbook includes a long list of risks associated with the surgery, including adverse reaction to anaesthesia, stroke, heart attack, blood clots in the leg or lung, bile leakage and liver failure. It says the risk of death is higher after live donation than the risk after routine heart by-pass surgery.
To date, Toronto General has had no deaths.
In the fall of 2005, Gosling had surgery. Two sections of the left part of his liver were removed and transplanted into a child who had incurable liver disease.
Cooper is Toronto General’s 16th anonymous living liver donor. Coming to Toronto eight times before the procedure, he underwent rigorous study to ensure he was in sound physical and mental health. He saw a liver expert, a transplant coordinator, two transplant surgeons, a family physician, an anaesthetist, a psychiatrist and a social worker. He completed innumerable forms, took a stress test, gave more than a dozen vials of blood and had his abdomen screened from every possible angle by CT scan and ultrasound.
Cooper says he took comfort from the process — “They told me I was the most studied patient in the hospital” — and from the many reassurances that he could back out at anytime, even the morning of the surgery.
If he had doubts, Cooper never spoke of them. But Deb says there were days when she wondered whether they were doing the right thing. Most people at their age safeguard their health and are grateful to not set foot in a hospital.
It took several months for Cooper to be approved as a donor and for the hospital to find a match. (The Star has agreed to not divulge dates, specific timeframes or any other details that would allow the recipient of Cooper’s tissue to identify him as the donor. Toronto General requires, and guarantees, strict donor/recipient anonymity.)
One week before his surgery, Cooper was back at Toronto General for the final round of tests. With the day closing in, butterflies were fluttering in his belly. But there was no going back.
I meet all the requirements to be a donor,” he told the Star at the time. “There is no reason for me not to do this when there is someone who could be saved.
It is the naked
altruism of the act that has so unsettled the medical community about anonymous live organ donation.
The title of a 2003 study, published in the American Journal of Transplant, succinctly sums up the prime concern: “The living anonymous kidney donor: lunatic or saint?
Dr. David Landsberg, director of transplant at St. Paul’s Hospital in Vancouver and a co-author of that study, says he initially did not support anonymous donation because, like other physicians, he believed the people who would want to do it must be psychologically unstable.
We thought: it’s not ethical to do donor surgery on somebody that has disordered thinking. And people who want to do this must have disordered thinking. Therefore, they can’t donate and we shouldn’t operate.
Landsberg, a kidney transplant surgeon who last performed the procedure on Wednesday, is now convinced otherwise.
They are mature, well-balanced individuals,” he says. “They do have saintly qualities. They come forward . . . and the only thing they get out of this is a feeling they helped somebody.
Dr. Martin Hertl, surgical director of liver transplantation at the Massachusetts General Hospital Transplant Center, says surgeons struggle with operating on living liver donors. Many who perform the surgery on an individual donating to a family member refuse to do the same operation for someone motivated purely by altruism.
You know this person is a perfect human being, and now you do something to that person that can change that,” says Hertl, whose centre does about five living liver donor surgeries per year and has actively decided to not operate on anonymous donors. “It is such a demanding procedure, mentally. Really, it’s the most challenging procedure there is in transplant.
You have to have guts to do it. You really have to believe in it. That’s the hard part.
Toronto General’s liver transplant team has found the middle ground in all of this. They are confident their robust screening process allows only healthy, sound-minded individuals to reach the operating room. More than 1,000 people have called the hospital’s donor assessment office since Gosling had his surgery. Of the approximate three dozen who submitted the appropriate documents, passed the initial screening and had further evaluation, just 16 have made it as far as Cooper.
Like other members of the liver transplant team, Dr. David Grant initially had reservations about the ethics of the procedure. He has since become comfortable operating on anonymous donors, performing more of these surgeries than any other in doctor in Canada. While all members of the team support the idea, some have chosen not to do the actual surgery.
Once a potential donor has been approved, Grant says, “I have to understand why they want to do it. It may not be my own choice or very many other people’s choice in that circumstance, but it has to make some sense. Then I’m pretty comfortable helping them accomplish that goal, because I think what they are trying to do is noble.
I tell my friends, ‘We live in a society in which people go hang gliding on the weekend for fun and take risks for the sake of the thrill of it. So living in that milieu, if someone wants to take a risk to help another human being, it seems reasonable we would help facilitate that.
Anonymous donors say a gut reaction to hearing about someone’s desperate need for a liver often propels them to apply to Toronto General’s program.
Sandi Hurcomb, a 42-year-old special needs educator at a high school on Manitoulin Island, knew within moments that she would be an anonymous donor.
Like Deb Cooper, Hurcomb heard Richard Beamish’s plea for a live liver donor on CBC radio. She was driving home from work and his story hit her hard. By the time the show ended, Hurcomb had made up her mind.
That night, she tried to learn more about Beamish by Googling him on her dial-up Internet. She didn’t find anything, but she did come across Toronto General’s application to be an anonymous donor. She filled it out, and in the space that asked whether she would like to donate a kidney or a liver, she wrote: “Whatever you need the most.
Hurcomb, who is married but does not have children, says it is difficult to articulate why she wanted to be a donor. Before her surgery, which took place in the summer, she spoke to students at her school. They kept asking her the same question: Why?
The best I could come up with was: everybody looks for one thing they can point to in their life and be unequivocally proud of. This is the one thing I can point to. If, on the day I die, I can say this is the one thing I did right, then I’m a couple steps ahead of other people. From that perspective, it’s quite selfish.
I struggle with people saying that I’m extraordinary or being congratulated on being so selfless. I really don’t see it from that perspective.
On the morning
of the surgery, John and Deb arrive at Toronto General at 6 a.m. They are dressed as if they are going for a walk into Hastings, the small town on the Trent Severn where they now live. He is wearing tan slacks, a white T-shirt and a black fleece. She’s in jeans, a simple beige top and sneakers.
During the 2 ½ hours of pre-op, John and Deb hardly stop holding hands. His fingers, tucked inside hers, are pale.
The couple say they are thinking of the other family that is a part of this story and who are waiting outside another operating room, talking to another transplant team.
What those emotions must be like,” says Deb, tearing up and then looking away.
It is that thought that sustains her in the waiting room while her husband is in surgery: Whatever she is going through, the other family has it worse.
At 9 a.m., Dr. Ian McGilvray makes an eight-inch vertical cut down the upper portion of Cooper’s abdomen. The surgeon, who specializes in liver transplants and complex liver surgeries, operated on Gosling, Canada’s first anonymous live liver donor. He has done about 70 living liver donor surgeries in his career, six of which have been on anonymous donors.
For the next hour, McGilvray works to separate Cooper’s liver from the surrounding tissue. Dr. George Zogopoulos, a transplant fellow, is his second pair of hands. They work quietly, in near synchrony, one on each side of Cooper’s gaping abdomen. A small iPod stereo plays Renaissance choral music.
By 10:30 a.m., McGilvray is waiting for X-ray technicians to take one last image of Cooper’s liver to ensure the anatomy of the organ is as they predicted. The transplant surgeon who will be operating on the recipient is here to consult with McGilvray on the X-ray images. If there is a problem, if they aren’t convinced they can safely proceed, they will halt both operations.
After a few minutes of conversation, the two surgeons nod at what they see.
I’ll get the patient in the OR and get things started,” says the recipient’s surgeon as he heads towards door. “Lets try to time this. I’ll stay in touch. We don’t want it to sit on the bench too long.
Over the next few hours, McGilvray carefully teases away the arteries and veins that lead into and out of the left side of the liver. Then he starts to split the liver in two.
The liver, about the size of a man’s pair of clenched fists, is a tangled network of hundreds of veins, arteries and bile ducts. Cooper’s liver is a dark, deep purple and as smooth and shiny as polished marble. Cutting the delicate organ with a scalpel would do life-threatening harm.
To split the liver, McGilvray uses a hydroject dissector — “essentially a thin stream of water that is forceful enough to divide the liver tissue, but is gentle enough that the hundreds of small bile ducts, arteries and veins that hold the liver together are not injured.” As they divide the liver, McGilvray and Zogopoulos close off the tiny ducts, arteries and veins with a cauterizer — a tool that seals tissue with heat — and metal clips. By the time he is done, McGilvray will have inserted 150 clips into Cooper’s liver.
Throughout the surgery, McGilvray directs his team with quiet requests. He rarely steps away from Cooper’s side. As the afternoon progresses, choral music is turned off in favour of rock ’n’ roll. First the Dave Matthews Band, then the Police and, finally, U2.
At 2:23 p.m., after checking to see if the recipient is ready, McGilvray cuts the left bile duct. He then prepares to clamp and cut the main arteries and veins that feed and drain the left side of the liver. This is the most critical stage.
Twelve minutes later, half of Cooper’s liver is in a metal bowl, floating in ice-cold preservation fluid. McGilvray flushes the organ with the same cold fluid, then places it into a plastic bag.
Beautiful,” he says.
By 2:50 p.m., Cooper’s liver has been wrapped in two more plastic bags and carefully nestled in a red, soft-sided cooler filled with ice. In one more minute, a nurse will carry it down the hall and hand it over.
John Cooper doesn’t
see himself as a hero or saint, or even as someone who deserves a whole lot of recognition.
This stance is not a ploy, nor is it false modesty.
For Cooper, giving a portion of his liver to a stranger was just one more step in the lifetime of steps he has taken towards doing the right thing. And perhaps this, more than the act itself, is what is heroic here.
Three and a half weeks after his surgery, Cooper was recovering well. He didn’t remember much from the four days he spent in hospital. A morphine drip kept him comfortable. When he was awake he could see the top of the CN Tower from his window.
The first week home Cooper mostly read and napped on the couch. By the third week, he felt well enough to take the dog for a six-kilometre walk.
For three more weeks, Cooper would have to wear compression stockings and inject himself daily with blood thinners to prevent clots. His trim frame looked leaner, and he said the surgery cost him nine pounds. But he had already gained three of those back, and Deb was feeding him lots of dark, leafy greens, which are supposed to help liver function.
Even though the act was behind them, the surgery seemed to have hit Deb harder than John. On his ward, she had encountered families whose loved ones were languishing on wait lists for organs. That made her realize even more just what John gave to that anonymous family.
I think about them every day,” she said. “My god, those people live it every day. The waiting and waiting and waiting. I can’t imagine.
Cooper’s calm bearing crumbled only when he thought about how people had reacted to news of his donation. They were flabbergasted by his goodness. They hugged him. They told him they couldn’t sleep at night for thinking about what he had done. A colleague at work cried when he found out why John was taking three months off work.
Greeting cards were displayed on a hutch in John and Deb’s dining room. Each was filled with good wishes. Many people who signed their name told John he had done a wonderful thing. One person predicted he would get back as much as he gave.
If John’s experience is like that of other living liver donors, especially anonymous ones, he might well find in time that his donation was a transformative experience.
Sarah Greenwood, a psychiatric nurse at Toronto General, says she and other members of the liver transplant team have learned living donors do gain from their experience. It may be greater self-awareness, an intense feeling of connectivity to others in their community, a sense of living beyond their physical body.
They don’t know about the payoff until the end,” she says. “A woman I met with talked about her donation as being an ongoing experience, a never-ending experience.
Sandy Hurcomb says the real impact of her donation hit only a few months after the surgery.
This was an opportunity for me to live on in somebody else without ever having to give birth,” she says. “I think this will always be the best thing I have ever done.
In the weeks after his surgery, Cooper was still focused on getting better.
No deeper thoughts or emotions had supplanted the simple answer he had repeatedly given to those who asked why he gave so much to a stranger.
There was no reason why I couldn’t do it. I have no regrets.
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