Tackling the decline in organ donor rates

The fall in the number of organ donors in recent times will be the focus of Organ Donor Awareness Week, writes MICHELLE McDONAGH

THE NEW programme for Government has reopened the debate around organ donation by pledging to replace the current opt-in system – whereby a person decides in advance of death to donate his or her organs – with an opt-out system where consent is presumed, in an effort to improve Irish donation rates.

The transplant community in Ireland has pointed out, however, that it has been proved in many other countries where it has been tried that “presumed consent” does not make a notable difference in the number of organs harvested for transplantation.

One proven way of increasing donor levels, according to groups such as the Irish Donor Network and the Irish Kidney Association as well as those involved in transplantation, is the appointment of fully trained organ donor co-ordinators in hospitals around the country, as well as continued public awareness campaigns.

The Health Service Executive has confirmed that it is “in the process of establishing a national office to promote transplantation and enhance organ donation practice in the health service”. Although his appointment has not yet been announced officially, it is understood that Prof Jim Egan, respiratory physician at the Mater hospital, will be clinical lead for this new office.

As the national launch of Organ Donor Awareness Week (April 2nd to 9th) takes place at the Mansion House today, the Government’s pledge regarding the opt-out donation system will be one of the main topics of discussion, as well as concerns over the dramatic decline in cadaver donors last year compared with 2009.

There are more than 650 people in Ireland awaiting life-saving organ transplants including heart, lung, liver, kidney and pancreas. Only 58 deceased donors gave organs to enable kidney, liver, heart and other transplants last year compared with 90 donors in 2009. That is the worst decline in organ donation on record.

Although the reason for this decline is unknown, there is concern in the transplant community about the poor performance of some of the country’s major teaching hospitals in comparison to some of our smaller, local ones.

Consultant nephrologist at St Vincent’s University Hospital, Dr John Holian, says organ donor rates have increased since the start of the year, which is very positive, but he points to “a systemic underlying problem” in terms of organ donation in Ireland. He says a lot could and should be done under the existing opt-in framework to improve donation rates.

“There appears to be a problem with how potential donors are being identified in intensive care units (ICUs) and how many of these are being converted into actual donors,” he says. “As there is no mandatory reporting of deaths within the Irish ICU setting, we can’t audit this conversion rate, but a one-year HSE audit carried out in 2009 showed a conversion rate from potential to actual donors of 65 per cent.”

He points out that there is no real evidence to suggest that the presumed consent system works, but there is evidence that it may reduce the numbers of living donors going for transplantation, which would be worrying for Ireland where the living donor programme has been a success over the past few years. “In European countries like Spain where presumed consent is enshrined in the legislation, it’s not really followed through on,” he says.

“They still ask donor families before taking organs and if the families refuse, then the donation does not proceed. The reason Spain has been so successful in increasing organ donations over the past 20 years is that it has spent significant resources on training dedicated organ donor specialists and putting them into hospitals with intensive care units. It’s down to the way the families are approached.”

Ireland could regain its position at the top of the European organ donor league table, according to Holian, if a number of key elements were put in place.

These include the establishment of a transplant authority “with teeth”, the introduction of legislation to facilitate various types of organ donation including non-heartbeating donors (which now account for one-quarter of donations in the UK), the appointment of full-time organ donor coordinators to hospitals and the continued promotion of public awareness around organ donation.

“If you appoint properly trained local organ donor coordinators, they will pay for themselves pretty quickly in terms of the difference in cost between transplantation and ongoing dialysis,” says Holian.

“There was a 64-65 per cent increase in the number of people on dialysis in this country in the six years up to 2009. The majority of those are on haemodialysis which costs €70,OOO-80,000 a year per person, excluding hospital admissions. A person who has a transplant can return to work and begin contributing to society again.”

Holian is keen to point out that he is not criticising ICU staff whose priority is to save lives. He points out that it is very difficult for them to immediately switch from this priority to bring up the subject of organ donation with a family they have often built up a relationship with. The appointment of organ donor coordinators would remove this burden from them, he says, and let them get on with the important jobs they are already doing.

While he welcomes the establishment of the National Transplant Authority, Holian says that rather than being another layer of bureaucracy, this agency needs to be able to audit and hold hospitals to account for their efforts in organ donation.

In Australia where Holian worked for eight years, a six-point plan has been developed in an effort to increase very poor organ donation rates. This new policy, which has taken its lead from the best practice of the world’s leading organ donor countries, includes the establishment of a national transplant authority and the appointment of organ donor coordinators to hospitals.

“I have no doubt this is going to be a very successful model. The homework has already been done by the Australians in terms of best international practice and we already know what works. We do not need another committee to tell us, so it should be very simple to get on with it in Ireland,” says Holian.

The chief executive of the Irish Kidney Association, Mark Murphy, says he is hopeful that the debate over presumed consent in Ireland will not have to be rerun, pointing out that this has already been debated extensively during the public consultation process on organ donation carried out in 2009.

“It’s been proven time and again in Europe that presumed consent does not work when you are working at the coalface of the health services and dealing with bereaved families,” says Murphy.

“The Spanish, who now have the best organ donor rate in the world, tell us that the key factor is not changes in legislation but changes in clinical practice. It’s down to how the families are approached, managed and helped by dedicated trained personnel.”

The chairman of the Irish Donor Network, Terry Mangan, says that given the improvement in deceased donor numbers since the start of this year and the resulting increased transplant activity, last year may have been an “unfortunate blip, a freak year for which there is no simple explanation, but one which sent shock waves through the Irish transplant community”.

THE NUMBERS: LATEST DONOR STATISTICS

In 1989, there were 105 kidney transplants from deceased donors in Ireland. In 2010, that figure had fallen to 98 even though the population has increased by about a million in the intervening period.

There were 178 people receiving dialysis treatment in Ireland in 1989 – today there are close to 10 times that number. At the start of this year, there were an additional 50 people on dialysis treatment as a result of the poor transplanting year in 2010. This is on top of the average annual 5 per cent growth in dialysis patients.

Overall, 51 fewer people got kidney transplants last year than 2009.

There were 38 liver transplants performed last year, the lowest number since 2003, while heart transplantation was down from 11 in 2009 to only three last year.

From 2000 to 2009, the average number of hearts transplanted each year was 11.

On a more positive note, there was an increase in donations made through the Living Donor Kidney Transplant Programme in 2010 to 23, five more than in 2009, and keyhole techniques to remove the living donor kidney have been introduced making the procedure an easier prospect for future living kidney donors.

DON’T FORGET: YOU HAVE SO MUCH TO GIVE

Irish Kidney Association (IKA) volunteers will be selling Forget-me-not flower emblems, brooches, magnetic car ribbons, organ donor keyrings and packets of seeds around the country during Organ Donor Awareness Week, which runs from this Saturday to April 9th.

Proceeds will go to the association’s extensive support programme for patients on dialysis and those patients who have had a kidney transplant.

In an effort to encourage more people to donate organs, the IKA is also launching an organ donor e-card that is available as an app for iPhones and android phones.

You can keep the completed e-card on your phone rather than in a wallet. To get the app, go to the Apps store on your iPhone, type “ecard” into the search engine and click onto the donor icon.

Plastic organ donor cards are still available from pharmacies, GP surgeries and Citizen Information offices. They can also be obtained by calling the IKA on 1890-543639 or Freetext the word DONOR to 50050. See ika.ie for more information.