Opting in to save lives

The Irish have a good record in volunteering to donate organs for transplant, but our system of organ donation is letting down many gravely ill people waiting for life-saving operations. How can improvements be made, asks Fiona McCann

‘SHE IS A serious fighter,” says Joe Humphries proudly of his 16-year-old daughter, Kiva, who first went into hospital in January of last year when she began having difficulty breathing after trying to climb a hill to school. Since then, says Humphries, “she has climbed bloody mountains”.

Time is running out for this Dublin teenager, whose heart degenerated so quickly over subsequent months that in April she was fitted with a mechanical heart, or ventricular assist device (VAD). This device has kept her alive for 297 days, but it won’t keep her alive forever, and for Kiva to survive to adulthood, she needs a new heart. The longest a person has been on a VAD in Ireland to date is 310 days.

Kiva has been on the heart transplant list since last July, after coming through two strokes and a virulent hospital-related virus that struck after the irreversible operation to fit her mechanical heart.

She cannot speak, communicating through eye and hand movement. The risk of further stroke or infection is increased while she remains on the VAD. But she is refusing to give up and has slowly regained movement in her right side, though her left side remains paralysed. It is this fighting spirit that has inspired her father to speak out in an appeal that he hopes will not only benefit his daughter but also help ensure that, in future, others won’t have to face the same excruciating wait for life-saving organs.

“We’ve seen the fight that she’s put up, we’ve seen the situation she’s in,” says Joe Humphries. “And nothing is happening. We have to try and do something to get her through.”

For Humphries, that “something” is a change in the Irish organ-donation system. The current system requires potential organ donors to specify their choice to donate, while allowing relatives to overrule this choice at the time of death.

Last month the Government launched a public consultation process on the issue of consent relating to the donation of organs for transplantation. It is part of the preparation of a Bill which will regulate the removal, retention, storage, use and disposal of human tissue.

For the consultation process, the Government is inviting members of the public and interested parties to give their views on the merits of the current opt-in system, and on alternative options. The alternatives include a mandated choice system, which would require every adult to register (whether or not they wished to donate their organs after death), and an opt-out or “presumed consent” system, wherein every adult would be presumed a donor unless he or she specified otherwise (or “opted out”).

“I would always have gone for the notion of ‘presumed consent’,” says Humphries of a system that already operates in varying forms in a number of countries, including Spain, Belgium, Austria, Sweden and Argentina. “It’s an absolute no-brainer to me.”

When the presumed consent law was passed in Belgium, the number of kidneys available for transplantation increased by more than 100 per cent in the five years that followed. Similar increases in organ donation rates were reported in other countries after they switched to the presumed consent or opt-out system, including Singapore and Spain (though the introduction of the same system met with such resistance in Brazil on its introduction there in 1997 that it had to be repealed).

Humphries is not the only one who’d like to see a change in the current Irish system.

“If you look at the countries that have presumed consent, generally speaking, organ donation rates have increased in those countries,” says Prof Jim Egan, a consultant respiratory physician at Dublin’s Mater hospital, who has worked in the area of lung transplantation for more than two decades. Egan says he favours the Spanish opt-out system, but adds a caveat. “Changing the consent issue alone will not work. It can only be successful in tandem with a transplant organisation or office.”

HIS CONCERNS ARE echoed by Prof Freddie Wood, director of the heart and lung transplant unit at the same hospital, who points out that the Republic is one of only two European countries without a national donor authority.

“You need some centralised body that at the very least will register a persons inclination for a donor card, or what a person has said on their driving licence,” he says. “It needs to be nationally recorded.”

Wood also says such an authority would ensure that donor co-ordination and registration was kept separate from transplanting teams, to guard against any conflict of interest. And it would help to organise the export of organs for which there was no match in Ireland. For Wood, finding donors is not the issue.

“We have a very good organ donation rate currently,” he admits. “The Irish people have 22 multi-organ donors per million population, which is nearly twice what it is in Britain, and that’s without any legislation or any authority that registers an individual’s wish to donate.”

This number is reduced, however, once the stipulation that relatives of the donor must be consulted at time of death is taken into account. Wood cites studies showing that, in approximately one-third of cases, relatives refuse consent for the organs of potential donors to be used. According to Wood, the problem is exacerbated by our current donation system.

“The current system is a voluntary opt-in system, which is unregistered,” he says. “When medical staff go to talk to relatives, nobody knows what the wishes were of the patient that has just died. So if you go to talk to relatives of somebody who has just died, in a grieving situation, you have no indication of what the patient would have wanted. Frequently the family doesn’t know either.”

But even if we changed our current system, Wood believes, the donor figures would not be improved. Instead, Wood is calling for legislation to ensure that a co-ordinating authority is informed about the death of every multi-organ donor, and that a donor co-ordinator or counsellor be placed in all major hospitals.

“Putting a law in place without putting all these other structures in place won’t make any real difference to the number of useful hearts and useful lungs that we can avail of in any year,” he says.

There are currently more than 20 patients waiting for a heart transplant in Ireland, and more than 30 waiting for lung transplants. Although these are not the only organs that are being transplanted, or that come under the organ transplantation system, those in need of a new heart and lungs are particularly vulnerable. “We dont have any other systems that will support them,” says Wood. “They have a terminal condition, and 25 per cent in both groups die within six months of being listed.”

KIVA HAS ALREADY passed the six-month mark, but the dangers increase with every passing day. Even if a heart does become available, with so many variables involved – including blood group, height and tissue typing – there is no guarantee it will be a match for her. Yet Kiva’s family is determined to lead by example.

“As far as our attitude is concerned, we’re all donors now,” says Joe Humphries. Taking his cue from his resilient daughter, he is refusing to give up hope. “We live every day on the basis that we’re going to get a cure for this. It can happen at any stage, and I just have a funny feeling it will.”

Mater Heart Week 2009 starts tomorrow and continues until Sat, Feb 14. During the week, volunteers will sell badges in aid of the Mater Heart Appeal to help equip the Mater hospital’s family heart screening clinic for relatives who have lost a loved one to Sudden Adult Death Syndrome or Sudden Cardiac Death.

Mater Foundation: 01-8303482, text 51444

Have your say: the organ donation options

Organ donation in Ireland currently operates under an opt-in system, where people can decide to donate their organs and voluntarily carry an organ donor card (Irish Kidney Association card pictured right) or tick the organ donor consent box on the back of the State-issued driving licence. At the time of death, however, doctors will consult with a potential donor's relatives and will not proceed with the removal of organs if they are opposed.

As part of its public consultation process in preparing the Human Tissue Bill, the Government is asking for views on the current system and other options. The options to be considered are:

Option A: Opt-out or presumed consent, which means doctors can remove organs from any adult who dies unless they have registered to opt out. Versions of this system are currently operating in Spain, Belgium, Austria, Sweden and Argentina.

Option B: Opt-in or explicit consent, which means doctors can remove organs from any adult who has opted in (decided to donate organs). In some cases, relatives of the deceased can overrule this decision. Variations of this system are currently operating here, in the UK and in the US.

Option C: Mandated choice or required consent, which means people would be required to register a choice to donate or not donate their organs.

You can respond to these options by February 28th by e-mailing tissue_legislation@health. gov.ie or writing to Tissue Legislation Consultation, Department of Health and Children, Room 324, Hawkins House, Hawkins Street, Dublin 2. For details of the variations within each option, go to www.dohc. ie/ consultations/open/Donation_of_Organs/ or call the Department of Health on 01-6354732/6354452.