Katie Mackintosh looks at the controversial issue of presumed consent of organ donation
“It’s difficult to describe what it is like waiting for the call that will save your life,” says Gill Hollis, “waiting and hoping but not knowing if it is ever going to come.”
Hollis was lucky; the call did come and earlier this month she celebrated the fourth anniversary of receiving a lung transplant.
“The greatest benefit is being able to live a normal life again,” she
says, “going out for supper with friends, working, walking to the
cinema, going on holiday, playing with my little nephews. I even
appreciate being able to do my own supermarket shopping!
“I’m back to being a participant, rather than a frustrated spectator.”
But there were times when she says her outlook wasn’t so positive. When she was first diagnosed with the chronic disease lymphangioleiomyomatosis there was little known about it other than it was extremely rare and is usually fatal within ten years.
“At the time I was diagnosed, they didn’t do lung transplants, they are fairly new because they are so delicate. They’re not as robust as kidneys or hearts,” she says.
As the disease progressed, she says she grew increasingly breathless and was forced to give up her favourite activities one by one. Having always led an active life – she had just returned from a trek in the Himalayas when her lung collapsed – she says she found the slow attrition of the disease debilitating and incredibly distressing.
When doctors recommended that she should be put on the transplant list in July 2003, she said it was not a difficult decision to make.
“I was deteriorating rapidly by that point,” she says, “so it was my only chance of survival.”
Nevertheless knowing that she had a 50 per cent chance of dying while on the transplant waiting list was incredibly hard, she says.
“It’s fine if you are waiting for something and you are able to go out and do things to get your mind off it, but by that stage, there was so little I could do. I was on oxygen 24 hours a day, I would wake up at night short of breath – all I could do was sit at home obsessing about the phone ringing.”
When the call finally came in 2004, she describes it as a “complete miracle”.
“The phone went at six pm when I was making the tea and it was my transplant co-ordinator and I just knew this was it. Within five minutes of putting the phone down, the ambulance was at my door, ready to take me down to Newcastle for the operation,” she says.
“I was running around the house flinging everything I could think of into a bag and by the time the ambulance got there, I couldn’t lie down for ten minutes because I didn’t have enough breath. I’d already had one false alarm with a transplant three months before so I remember sitting there, struggling to breathe, thinking this is it, I’m running out of time, whatever happens, I need this transplant now.”
Luckily, Hollis’ story has a happy ending and four years on she now counsels others who are in the same position she was. While at times upsetting, she says she feels really strongly about doing this as it gives her the opportunity to give something back. It also reminds her of just how lucky she was, she says, as while some go on to have successful transplants like hers, there are others for whom the phone doesn’t ring in time.
According to UK Transplant, 7,569 people in the UK are currently waiting for transplants. In Scotland the number of people waiting for a transplant has risen by almost 20 per cent since 2005 to 818 as of July 2007. In 2006 the average waiting time for a kidney transplant was 1472 days, but unfortunately, many patients simply don’t have that time to wait.
Despite strong support for organ donation professed by the public – a 2007 YouGov survey showed that 69 per cent of respondents in Scotland would be willing to donate their organs for transplantation after their death – currently just one in four adults is signed up to the NHS Organ Donor Register. Moreover, not everyone who dies is viable to become an organ donor, and as a result just 50 organs were donated in Scotland last year.
As part of a recent drive to increase organ donation rates, a UK-wide Organ Donation Taskforce, which was established by the UK Government, has been investigating ways of improving these figures. In January the taskforce published its initial report, which made a range of recommendations, including recruiting 100 extra donor transplant co-ordinators to guide and support bereaved families through the donation process and establishing 24-hour dedicated organ retrieval teams. This report, however, did not deal with the controversial issue of presumed consent, which the taskforce will report on separately in the summer.
The idea of adopting a system whereby individuals can opt out of organ donation, rather than the present system where individuals must opt in by joining the organ donation register or by informing their family of their wishes, is not new and has already been introduced in other countries, such as Spain, with successful results in increasing donor levels.
Indeed, it is not even a new idea in Scotland, and was hotly debated during the passage of the Human Tissue (Scotland) Act 2006, when Liberal Democrat MSP John Farquhar Munro tabled an amendment that would have introduced presumed consent in Scotland - this was eventually defeated by 87 votes to 18.
But while controversial it could, medical experts say, potentially save hundreds of lives each year.
“We keep pushing for it because we really think it will make a real difference,” says George Fernie, BMA Scotland.
The BMA, he explains, supports a system of soft presumed consent whereby donation becomes the default position unless the individual chooses to opt out during their lifetime, or their relatives object. This, he argues, would increase the rate of donation while ensuring safeguards are in place that respect the wishes of potential donors and the sensitivities of their families.
Pointing to a recent YouGov survey that found that 74 per cent of respondents in Scotland support a move to a system of presumed consent, he says that the public are ready for such a move and it is just the politicians who remain to be convinced.
But while public will appears to be turning, is there the political momentum?
Well, it appears the BMA is knocking on an, if not yet flung open, at least ajar door. Prime Minister Gordon Brown has already expressed his support for introducing a system of presumed consent, and Health and Wellbeing Secretary Nicola Sturgeon has also said she is “sympathetic” towards such a move.
While relations between Holyrood and Westminster have soured of late, could this be an issue where political parties will put aside their differences and the Scottish and UK governments could work together on this?
“I think so, yes,” says Lord George Foulkes MSP, who recently led a debate on presumed consent in the Scottish Parliament. “It’s not a party political issue, which the debate showed.”
Foulkes, who admits to being a recent convert to the idea of presumed consent, having previously voted against it in the Commons, says he has been encouraged by discussions with both Sturgeon and Public Health Minister Shona Robison, who, he says, are “coming round to the idea that presumed consent is the best way forward”.
As one of only two MSPs who still straddle the greatWestminster/Holyrood divide – the other being First Minister Alex Salmond – Foulkes feels he is “uniquely placed” to make sure the subject gets fair hearing on both sides of the border.
“Things are moving in the right direction,” he says, “but it is a sensitive issue and it will take a great more debate. I really think it is important that Holyrood and Westminster work together on this.”
But as part of these debates it is clear that personal accounts, such as Hollis’, have a key role to play. Does she think an opt-out system would have made a difference to her experiences or of those who are still waiting?
“Well, while you are waiting, you know that there is only a 50 per cent chance of you getting an organ in time, which is a terrifying statistic. So if those odds can be bettered, anything that does that is worth doing, in my opinion.”
Does she think it could make a difference to those, like her donor family, who are faced with the difficult decision about whether or not to donate their loved ones’ organs?
“I do,” she says. “I’ve actually seen it from the other side as well, sadly, as my husband’s cousin’s husband died suddenly and she was faced with that horrible decision.
“She obviously knew what I had been going through,” she continues, “and I remember her saying to me, ‘I can’t tell you how awful it is trying to decide what to do.’ There she was trying to come to terms with her husband’s death and what to tell her two young children and someone comes along and says you need to decide this now. It was very hard.”
At present when the family do not know their relative’s wishes, 40 per cent opt for the default position, which is not to donate. Hollis says a soft system of presumed consent could change this and would save the family the pain of having to make a proactive decision at that time.
“With a soft system the doctors could say to the family, now we haven’t found any record that your loved one didn’t want to donate their organs so on that basis, we will go ahead unless you have any objections.
“So that changes it from a proactive decision to something more palatable.”
However, she accepts that whichever system is in place, it is still an incredibly difficult time for the donor family. A few months after her transplant, she wrote to her donor’s family. She describes it as the hardest letter that she has ever had to write, but also the most important.
“Gratitude was the main emotion I wanted to express, but how do you put into words how you feel about them making a decision that saved your life?”
In the end, she chose to describe to the donor family what her life was like before the transplant and how it had changed since, in the hope that that would show how deeply grateful she feels and might go some way towards helping them in their loss.
“I’m very aware that every big milestone for me is another sad anniversary for them,” she says. “I can’t thank them enough for the decision they took. All I can do is try to live a life that makes their decision worthwhile.”
Readers have left 2 comments. 1. Organ donation
Chris Barron, Unregistered I wish to suggest a third option to the opt-out scheme.
I would like to suggest the opportunity for one to sell their organs, upon death.
It costs the government about £30,000 per year for a dialysis patient so I would be more than willing to sell a kidney for £5,000 in order to save the country £25,000 per year, give another person a better life, and the proceeds should go to my family to help them cover the inheritance tax.
The state taught me that I don't get something for nothing, and even when I die I must pay tax. I feel that I have learned these lessons well. My organs are only available if the government pays for them 2. Organ donation
Hannah Smith, Unregistered That is the most disturbed and selfish thing I have ever read! You are a disgusting human being |
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