John Forsythe knows it could happen any day. The call will come to say a liver has been found and the protocol for the momentous operation will swing into action. Ask how he feels and he says: “Excited and daunted in equal measure. I have very mixed emotions about it.”
He is not the would-be recipient of a donated liver, but one of Scotland’s most eminent surgeons and part of the team that will carry out the UK’s first live liver transplant on the National Health Service.
The reality of this pioneering procedure can be difficult for outsiders to contemplate. It involves a living person who is prepared to undergo invasive surgery — at no little personal risk — so that part of their healthy liver can be removed and donated to someone else.
Permission to carry out the £50,000 procedure was granted by the Scottish executive three months ago, and since then Forsythe and his colleagues have been preparing, technically and emotionally, for the operation that will propel them into the medical history books.
Sitting in his office in Edinburgh Royal Infirmary — I’ve seen bigger wardrobes — Forsythe, who is clinical director of the Edinburgh liver transplant unit and president of the British Transplant Society, explains just what live transplantation entails.
An easy communicator with a reassuring manner, he exudes none of the hauteur for which surgeons are renowned. A son of the manse, he is not so much playing God as facilitating a route out of purgatory for those desperately sick patients who live in the limbo of the transplant list.
“We’ve been ready to go since April,” he explains. “We have had informal approaches from relatives of patients on the waiting list, but so far nobody has come forward in any formal way to say this is what they want to do.
“That is the difficulty in starting a programme like this.”
Live liver transplantation is one of the most challenging procedures a surgeon can undertake. When Forsythe’s team receives news of a potential donor, he or she will undergo a series of medical and psychiatric tests as an outpatient. Only when a team of experts is satisfied can the seven-hour procedure begin with the removal
of a section of the donor’s healthy liver.
In an adjoining theatre, the recipient will be prepared for life-saving surgery. Once the section of healthy liver has been removed, the transplant takes place immediately. The donor can then expect to spend at least two weeks recuperating in hospital.
The liver is an organ with a remarkable ability to regenerate itself. The operation involves taking a portion — typically about 60%, which is about 13cm long — from a live donor and transplanting it into a patient who is so sick that without a transplant he or she would die within months. In textbook cases, the donor’s liver regenerates itself within 12 weeks, the recipient’s liver grows and they both go on to lead normal lives.
The Edinburgh team already routinely carries out “liver resections” — where part of the liver is removed because of a tumour. As for transplanting a partial liver, that also already happens. The organs are in such short supply they are sometimes divided to give two patients the chance of life.
But live liver donation is more than the sum of these parts and carries considerable risks. In 15% to 20% of cases, significant complications such as infection, bile complications, internal bleeding and thrombosis arise. The risk of death to the donor, however, is 0.5%.
The Edinburgh team has been driven to consider increasingly extreme measures because of the acute shortage of donor organs and the rising demand for livers.
The team is now even using poor-quality organs that might not have been considered in the past. Thirty people are currently waiting for a liver transplant.
“It might not sound many, but, sadly, there are only two ways off the list,” says Forsythe. “You either have a transplant or die.”
In the past 12 months, 13 patients have died waiting. Time spent on the list is also growing. It used to be unusual to spend 12 months on it; now it is not uncommon to be on the list for 15 months, with all the deterioration that implies.
The significance of what he is planning to undertake is not lost on Forsythe. “Live donor transplantation feels different from any other form of surgery,” he says. “The individual over whom you are holding a scalpel with the intention of inserting it into their body doesn’t need that operation. That is true of a live kidney operation, which is a well-established procedure.
“When you look at live liver transplantation, the stakes are considerably higher. The risks of serious complication and death are significantly higher.”
For a doctor whose first responsibility is “to do no harm”, the prospect of carrying out such a pioneering procedure in the full glare of the media spotlight could be overwhelming.
Forsythe, a father of three, rationalises it by saying: “If it were a member of my family and I could see them deteriorating while on the transplant list and I knew the hospital had the facilities and expertise to carry out live liver transplantation, I would say: ‘Why not go ahead?’ ”
The ideal donor is somebody who is fit and healthy with good liver function, able to process all the information and face surgery with the maximum chance of coming out without complications. Age is a factor, but there is no hard or fast rule. As Forsythe points out, some 60-year-olds are fitter than some 40-year-olds.
Livers do not have to be matched in the way bone marrow or kidneys have to be matched. The recipient and the donor should be from the same blood group and their livers need to be of a comparable size. You cannot transplant a portion of a small woman’s liver into a 16st man. But the relatively broad compatibility of potential
donors and recipients raises as many ethical questions as it does opportunities.
“The question you then have to ask is who in the family would you do this for?” says Forsythe. “If you are a parent you would lie in front of a bus for your child, so to a certain extent you have to be defended from yourself. But if you are a competent adult and all of the complications are put before you in a very transparent way, and you still want to do it, it would seem reasonable to me.”
He assumes that the first live transplant will be between close relatives, but would have no problems carrying out the procedure on a gay couple or another close partnership. Donors would be offered lifelong follow-up. “We would expect the first approaches from close family partly because of the risk,” he says.
Forsythe, 48, was born in Northern Ireland and grew up during the height of the Troubles. His father was a minister in the Church of Ireland and his sister married her father’s first curate, so religion permeates his family.
He knew from an early age that he wanted to be a doctor and it is no coincidence he has pursued a branch of medicine in which moral and ethical dilemmas are so profound.
Not everyone who has experience of live liver donation is an enthusiastic advocate.
In January 2002, Mike Hurewitz, a 57-year-old newspaper reporter, died in Mount Sinai medical centre, New York, after donating part of his liver to his brother Adam.
The hospital was the leading pro-ponent of live liver transplants in America.
After his death, the programme was suspended and an investigation undertaken. “Woefully inadequate” post-operative care was a factor and Hurewitz’s widow, Vickie, has become a vocal campaigner for an end to all live liver donation.
“I look back now,” she says, “and I think, where were we? Why weren’t we asking any questions?” The inscription on her husband’s headstone reads: He died for brotherly love.
“I can understand her concerns,” says Forsythe, who acknowledges that the case had a damaging effect in America. “If you feel rightly or wrongly that you weren’t given enough information and there is a very bad outcome, it’s natural you are going to feel as this lady does. But if you are from a family where an individual is deteriorating and is on the transplant list, you know all the risks and still want to go ahead, do we as surgeons have the authority to say ‘no’ to that individual?
“If the donor wants it and it does have a very good chance of success — way in advance of many of the treatments for cancer — then is that not a reasonable thing to do?”
The pressures of the job are immense. The transplant surgeons regularly work 80-hour weeks. They can spend one night in three and every third weekend on call with no time off.
New directives on junior doctors’ hours mean consultants used to be involved in 10% to 15% of organ retrieval — a process Forsythe says invariable straddles midnight.
Now the figure is 90%.
“I could write an Egon Ronay guide to the hospitals of Britain,” he says. He prefers to concentrate on the highs rather than the inevitable stresses.
“It can be difficult, but when you have a patient who has been so sick and then recovers to such a degree that you don’t even recognise them, the positive effects are huge. The highs in this job tend to be very high.”
Live liver donation was pioneered in Japan and South Korea, where the shortage of donor organs is even more acute than it is in the UK. “All religions back the idea of organ donation, but culturally there is often a gap between people’s willingness to donate,” says Forsythe, who trained in Newcastle.
It is now a well-accepted procedure in Europe and America, and has been carried out in King’s College hospital, London, on private patients, mostly from abroad.
Why has Britain come to the procedure so late? “I don’t know,” Forsythe says. “Is it our natural conservatism? People are certainly uncomfortable placing themselves at such significant risk.
“I was hoping other centres in the UK would offer the procedure around the same time as us. That hasn’t occurred. But Scotland was the first to have a dedicated unit for pancreas transplantation and that then happened for the rest of the UK, so I’m hopeful it will happen with live liver donation.”
One thing is certain — the need for liver transplantation is growing as hepatitis C and alcoholic liver disease increase. “It is a significant worry,” says Forsythe.
There is a desperate shortage of donors. Initiatives including a programme about transplantation in secondary schools are being piloted.
In the past, 30% of relatives refused to donate the organs of a dead loved one. That figure is now 40% to 45%.
“Post-Alder Hey, post-Shipman, post-Bristol, there is a slight loss of trust between those who deliver care and those who receive it in the NHS,” says Forsythe.
“If you are approached at a time of great tragedy in your life, when you don’t even want to be asked what you take in your tea, you are going to react in a reflex manner. But we have a duty of care not just to the recipient but also to the donor and the donor’s family. That is very high in our priorities.”
He acknowledges the route pioneering surgeons must navigate between informing patients of a new option and pushing them, however gently, towards it.
Booklets have been produced explaining the procedure, but it is left to the patients to make the approach.
“We wanted to make people aware of the possibility of this, but at no point do we want people to feel coerced,” he says.
“We would anticipate doing the first procedure this year. It must be very difficult if you are a relative and you see your loved one literally deteriorating before your eyes on the transplant list.
“It’s a very fine balance. We provide the information and then step away.”
But Forsythe and his team are ready to step back at any time and push the boundaries of modern medicine in an effort to save a life. All it will take is one selfless and courageous relative to step up to the plate.
The NHS Organ Donor Register Hotline is 0845 606 0400. Liver recipient co-ordinators at the Scottish Liver Transplant Unit are on 0131 242 1721.
