How one organ donor can save nine people

There is a worrying shortage of organ donors and gaining consent from grieving relatives is a delicate task, says Simon Crompton

Simon Crompton

It’s 3.30pm and Julia Hadley, the consultant on duty at the Royal London Hospital’s intensive care unit (ICU), still hasn’t had lunch. It’s been a tough day: there are more admissions than usual and it has been snowing. She sits down in a staffroom, taking a bite from a sandwich. “It’s a bit depressing out there today,” she says. Lying outside are six young people with serious brain injuries and at least two of them look as if they aren’t going to make it. Three older people, some with multiple organ failure, also appear to be losing the battle.

On average, only one in four of the critically ill people admitted to the ICU at the Royal, in Whitechapel, East London, can’t be saved, but to the consultants on duty it feels like failure. “You know it’s inevitable that you’re going to lose some, but it’s tough when there are more than usual,” Hadley says.

Trish Morrissey, the hospital’s organ-donor transplant co-ordinator, has managed to catch Hadley after 15 minutes patiently waiting in an ad-hoc queue of junior doctors, nurses and other consultants outside the doctors’ room. It’s her job to ask “What if they do die?” and offer some positive practicalities about organ donation. One by one, Hadley and Morrissey go through five of the sicker patients on the unit: what are their chances of recovery, whether they’re being assessed for brain death, are any of their organs suitable for donation, what discussions have been had with relatives about the patients’ fates?

Hadley’s mood begins to lift. The possibility of the organs saving lives relieves the sense of ending. It makes a death the beginning of something else, Morrissey says. “It’s amazing how the prospect of donation can have a similar effect on the families of those whose lives are tragically ending on the ICU ward,” she says. “The idea of loved ones’ organs going to help someone else can have a transforming effect.”

The ICU is Morrissey’s domain: it is one of the busiest and best-equipped units in London, famous for patients flown in by the helicopter ambulance, which lands on the hospital roof. Wherever you are in Britain, hospital ICUs and A&E are the sole source of organs for donation. The organs need to be removed before tissues have started to degenerate, either soon after death, or, more commonly, when a person is declared brain dead and the heart is still beating because he or she is on a life-support system.

It’s in ICU that Morrissey — a former nurse in A&E — talks to families about their wishes. She’s been the transplant co-ordinator here for a year and loves it. It’s the long-term contact with people that she appreciates — very different from the rushed encounters of many nursing jobs.

Sometimes, like today, there are no donor families to counsel, so she’s assessing patients and liaising with consultants — when they have a moment. Later, upstairs — in a tiny office on the corridors where the Victorian surgeon Sir Frederick Treves looked after the Elephant Man — she’ll be following up what’s she found out, checking who’s on the organ-donor register, sometimes tracing next of kin.

The people on ICU today are suffering mainly from crash injuries and brain bleeds, or are older people with organ failure. Their mouths are held agape by ventilator tubes, their bodies hooked up to towering white monitors recording blood pressure, pulse, temperature, fluids. Infusion pumps are feeding them insulin, painkillers, drugs to keep them sedated to give the body a chance to recover, drugs to keep their blood pressure down. The quiet beeps and flashing lights are a constant source of anxiety to visitors looking for signs of improvement or deterioration.

Morrissey shows me the relatives’ room, off the main ward, where staff talk to families about treatment options, or lack of them. “If we bring people in here, they tend to know it’s not good,” she says. The room has salmon-pink chairs around the walls, chipped paint and a couple of inoffensive prints on the walls: not sumptuous. But then there probably isn’t a good room in which to break bad news.

On average, 12 to 14 patients die each month on this ward. Of those, only three to four can be considered for donation — the organs of the others will not be suitable. Family consent will be obtained for only one or maybe two of those selected. But one person will be able to donate heart, lungs, liver, kidneys, pancreas, intestine and tissues including corneas, skin and bone. One donor can save or transform the lives of up to nine recipients.

Around 10,000 people in the UK now need an organ transplant and three die every day waiting. Just under 2,000 people a year donate their organs, resulting in around 4,000 organ transplants. It doesn’t add up and there’s a desperate shortage of people agreeing to donate their organs after their deaths.

The shortage of volunteer donors has been rammed home in the Organ Donation Register’s powerful advertising campaign, pointing out that 99 per cent of us would accept an organ if we needed one, but only 27 per cent of us are on the register. Joining the register is a way of giving consent that you’d like your organs to be used if possible — legally hospitals are entitled to remove organs if a patient holds a donor card, even if next of kin do not consent. Morrissey says that this doesn’t happen much in practice. She thinks it’s important that families talk together about organ donation — then there’s less chance of a family cutting across a potential donor’s wishes.

Why do so many of us resist donation? Survey results released to The Times by the NHS Blood and Transplant authority show how complex it is to get us to commit. Discussion groups and a survey of 1,500 people reveal that 17 per cent are unsure or cautious about registering; 13 per cent have mistrust about medical processes surrounding donation; and 11 per cent have strong but often ill-defined feelings about retaining the wholeness of their body after death.

So though many of us know the logic of donating our organs after death, we don’t behave rationally about it. There’s an off-putting mystery about the process, not helped by news stories about people receiving organs that later prove to be cancerous.

Morrissey knows how hard it is for some people to make a decision. As doctors prepare to remove life support from those who will never recover, and begin to assess brain-stem death in others, she builds up a relationship with the next of kin, helping them to understand the dying process and what’s about to happen. At first, donation doesn’t come into the conversation. No relative can make a decision about donation until it’s sunk in that the person they love is dead or about to die. Sometimes it can take hours of talking.

Some can’t rationalise why they object. A woman whose son had died told Morrissey she just felt that donation wasn’t right for her or her son, but she knew it was the moral thing to do. Morrissey agreed and spent a lot of time supporting her in her decision. But it didn’t sit easily with the woman and she is still receiving support from the hospital’s bereavement service.

For others, the decision is more straightforward. “Yes, of course we’d like her organs to be donated,” the young daughter of a woman on life-support told Morrissey. “She was always into recycling. I don’t see this is any different.”

The truth is that the more you’re confronted with the hard realities of organ donation, the more the mystery disappears, the less scary it becomes. Next of kin of donors get a remarkable level of devoted support from the transplant co-ordinator at an incredibly stressful and busy time. Co-ordinators stay in touch months and even years afterwards if they wish.

Recently Morrissey wrote a letter to two boys whose young father had died after a car accident two weeks previously. She called their dad a “real hero”. Their mum wrote back to say what joy the words had given the boys. “Hero is a very emotive word and for children struggling with the traumatic end to a father’s life,” Morrissey says. “But I wanted to give them something tangible to hold on to. You can see them bragging to other boys about what he was like at end of life as well as during it.”

A common worry surrounding donation is what happens to the body. The co-ordinator is with the donors’ bodies from death, throughout the retrieval surgery. She carries through all the families’ wishes, no matter how unusual. The other week, Morrissey was with the body of a young woman whose family requested that her favourite X Factor songs were played while her organs were being removed.

As for the surgery, it can take eight hours and is carried out as meticulously as if the patient were alive — the surgeons who perform it are usually the same ones who transplant the organs into recipients. After surgery, the wounds are sutured and dressed and the body is prepared by mortuary staff in the same way as any other patient. “They generally look no different,” Morrissey says. “If the corneas have been donated there can be slight discoloration of the eye, if skin has been donated there can be marks like burns on the legs, and tummies can look a bit thinner. But that’s all.”

Julia Hadley returns. The granddaughter was OK — she knew that her grandmother had a poor quality of life, and now she has severely deteriorated, with pneumonia, kidney failure and various serious infections, it has come as no surprise that the chances of her surviving if she came off life support are zero. She doesn’t want to prolong her misery. Unfortunately, because of widespread sepsis and multi-organ failure she won’t be suitable as a donor, so Morrissey won’t raise the subject with the family.

Yet people in their eighties can donate organs. Different units have different policies on how perfect organs need to be before they are transplanted. The BBC recently produced evidence that more organs from higher-risk donors — those who have had cancer, for example — are being used for transplantation because of a shortage.

This accounts for the occasional “Man caught cancer from donated organ” story. The Royal doesn’t transplant high-risk organs, says Morrissey, but it’s a mark of how desperate people are for transplants that they will accept them. “The important thing is that potential recipients are fully informed of any risks,” she says Many assumptions about organ donation are wrong. What is clear after spending time with those who deal with the subject is how wrong it is to assume that the only people who benefit are those who receive organs. It’s the benefits to those that the donor has loved and left behind that hospital staff witness many times.

Gerlinde Mandersloot, another ICU consultant, says that she’s seen the huge comfort that can be brought to bereaved families. “Life is such a precious thing to give, and in my experience it means a lot to people to think: ‘If we can’t do anything to make this person we love survive, then somebody else should get this very precious gift that they don’t have any more’.”

Morrissey agrees. “Often people’s body language changes once they consent to donation. Their perception of the experience changes, and they’ll almost relax a little more. As you gradually take them through the process, it opens up their grief a little more, and stories and anxieties come through in a way they feel they couldn’t express before. They feel almost a relief.”

If you want to join the organ donor register go to: organdonation.nhs.uk

"A bit of good has come from this"

Patrick Collins still never sits on the sofa, he sits on the floor leaning against its left side. The right is where his wife Cath used to sit, at times twirling his hair and telling him he needed it cut.

Patrick’s hair is looking a little long these days — 11 months ago, Cath died of a brain haemorrhage at the age of 56. The two had been together since their first day at infant school. How do you cope with a hole that size in your life? Patrick doesn’t know, but he’s adamant that one thing has helped. He holds out a letter to me notifying him, one month after Cath’s death, that a 45-year-old woman had received Cath’s lungs after an 18-month wait, and would survive as a result. A 39-year-old man had received a life-changing kidney transplant. A 48-year-old man who would have died had received her liver. Her heart valves were at a specialist heart centre ready to be transplanted at a later date. Potentially 50 people with serious injuries would benefit from her donation of skin and bone.

“When Cath was on life support, and we were asked whether we would like her organs to be donated, it seemed an obvious thing to do, if her death could help other people,” Patrick says. “It’s helped me that something good has come out of her death. I show that letter to all my family and friends, and they’re amazed.”