Organ donation: a new model for Ireland?

A surge in the efforts of hospital staff to approach the families of recently deceased patients about donating their organs is being credited with a dramatic increase in the number of donor organs and transplantations so far this year.

We are a generous nation; new data from the European Commission reveal the willingness of 64% of Irish people to donate their organs immediately after death, and almost 60% would agree to donate an organ from a deceased close family member, if they were asked in a hospital.

But this ultimate act of charity could be lost without the timely and sensitive intervention of fully trained organ donor co-ordinators in hospitals around the country.

That’s the message from a recent European Commission (EC) workshop on organ donation and transplantation in Brussels, during which the heads of transplantation organisations in Europe alongside organ recipients expounded the importance of streamlining national donor and transplant systems to maximise organ availability and save more lives.

Croatia’s remarkable achievements in this regard were held aloft as an example for Ireland and other countries whose donation and transplantation rates in 2010 were well below the EU average.

A country similar in size to Ireland, Croatia managed to transform its national transplant system, climbing from 14th to 2nd place in Europe for deceased organ donations, just behind Spain, in only one year.

In 2010, Croatia’s donor numbers exploded, increasing by an astonishing 64.9%, and the total number of organs transplanted from deceased donors increased by 54%. This remarkable result has been largely attributed to Croatia having placed trained donor coordinators in all their major hospitals and offering financial incentives to donor hospitals.

This new system is based on a model pioneered in Spain in the 1990s, which has more than tripled organ donor numbers and elevated Spain to the world’s highest ranking country for organ donations at 32 per million of population last year.

By sharp comparison, Ireland fell to 22nd place in Europe in 2010 because of a drastic drop in deceased donations of over one third in 12 months from 90 to 58 deceased donors.

However, the level of deceased donations so far this year has already surpassed 2010 figures. Thanks to the generosity of 77 deceased donors and their families willingness to donate their organs, there have been 137 kidney transplants, 49 liver transplants, 6 pancreas transplants, 4 heart transplants, and 8 lung transplant operations. This year will also mark a record year for living transplantation with 24 living kidney transplants carried out, as of mid-October.

With the establishment of Ireland’s transplant authority - the HSE National Organ Donation and Transplant Office - in March this year, and a report of the first external review of our organ donation and transplantation services expected by the end of November, it appears that Ireland is taking its obligations under a new European Union (EU) Directive on Organ Transplantation very seriously.

According to the new rules, which will be transposed into national law by July 2012, all EU member states must have a national authority responsible for maintaining quality and safety standards for organs intended for transplantation. The first undertaking by Professor Jim Egan when he was appointed Director of the Organ Donation and Transplant Office in March this year was to convene a National Transplant advisory group. He also instigated the first external expert review of Ireland’s organ transplantation service in October.

Professor Jim Egan

Prof Egan told Modern Medicine of Ireland that his office, in partnership with the Intensive Care Society of Ireland and the National Organ Procurement Office, are in talks to further develop a network of donor coordinators in hospital Intensive Care Units (ICUs) around the country, which will “bring Ireland to a level comparable to international practice”.

He indicated that these individuals would be drawn from “existing voluntary expertise” at a medical and nursing level. Under discussion at the moment are the number of donor co-ordinators to be appointed nationally, in which hospitals they will be based, and what protocols and training will be appropriate for these crucial and challenging posts.

Expanding the network of hospital donor co-ordinators is a key priority in the new EU Directive and accompanying 10-point action plan. It is considered the first step in developing a proactive donor detection programme and optimising the entire process of organ donation.

Whether these individuals should have a medical, nursing or psychology background is under debate. For example, in the UK, the majority of donor transplant co-ordinators are registered nurses that have experience in critical care. Mr Mark Murphy, Chief Executive of the Irish Kidney Association, maintains that the donor co-ordinator would benefit from a background in bereavement counselling. In Spain, more than half of the donor co-ordinators are doctors.

“Our philosophy is that the transplant co-ordinator should be a doctor and should be based in the hospital,” Dr Rafael Matesanz, who is Director of Spain’s hugely successful National Transplant Organisation (ONT), told Modern Medicine of Ireland.

Dr Rafael Matesanz

“I know there are many countries who have a different philosophy, some have nurses, some have social workers or psychologists, but our philosophy in this, and what we tell all the countries who have asked us how do you organise this, is that the system which works is to have an in-house medical coordinator.”

He continued: “The European Directive requires all 27 countries to have a competence authority to be in charge of organ donation and to guarantee quality and safety of transplantation. But in fact this competence authority should be responsible for creating a system of co-ordinators, which is the system in place in Spain, in Belgium, in France, in Italy, in all of the countries that have been improving organ donation levels.”

Dr Matesanz outlined the chain of organ donation and transplantation, which begins with donor detection and moves systematically on to donor maintenance, brain death diagnosis, family consent, local and organisational factors, procurement and, finally, transplant. He stressed that the two weakest links in this chain are donor detection and family consent.

“Approaching the family is probably the key point in this process and is a very sensitive topic. When the family is approached they can say yes or they can say no, the difference this makes is that many people can be transplanted or they cannot. And the decision they make relies primarily on the skill of the person who makes the approach about organ donation,” he told delegates at the workshop in Brussels.

Meeting families’ support needs during this traumatic time is an obligation and a challenge for critical care staff. Results of research spanning over 30 years on the effects of families’ hospital experiences on their decisions about organ donation for a relative have generated compelling evidence regarding the significance of families’ satisfaction with hospital care, their understanding of brain death, and the timing of the donation request.

Some of the issues raised include the importance of families’ being given time to bring up concerns with staff, receiving clear information about their relatives’ condition and the organ donation process, not being pressured to make a decision, and being shown respect and compassion.

Dr Matesanz advised Europe’s cash-strapped national health authorities that focusing on the management of the donor/transplant process at hospital, regional and national level would be the most effective use of resources.

“It is unwise to have too much confidence in direct publicity campaigns aimed at the general population,” he cautioned. “Apart from some anecdotal observations, there is no evidence in medical literature documenting that direct publicity campaigns are really able to influence positively the attitude of the public to organ donation.”

He illustrated this point by highlighting two national polls – conducted 13 years apart – that gauged the attitudes of the Spanish population towards organ donation. Between 1993 and 2006, despite ongoing organ donor awareness campaigns, the number of people willing to donate their organs remained static. However, the number of actual donors during this period more than tripled from 550 to 1,606, due to a restructuring of the Spanish organ donor and transplant system.

Ms Charlotte Möller, coordinator for donation and transplantation at the National Board of Health and Welfare in Sweden, offered a qualified agreement on this point, arguing that expensive “blanket” organ donor publicity campaigns are not effective but a carefully devised and focused campaign does work and is much cheaper by comparison.

She explained how, over a three year period, the Swedish government spent €2.7 million on TV, radio and newspapers campaigns to raise people’s awareness about organ donation. The outcome was only a slight increase in the national donor registry numbers and donor frequency.

So, a new communications strategy was developed in 2010, culminating in a weeklong awareness campaign in October that year. A special team was assembled to work with the new strategy; a central web portal was set up; online social networks were utilised; media kits were developed, focus was placed on patient stories and their families, along with other initiatives.

The donor awareness week resulted in a blitz of TV and radio interviews, more than 100 articles and massive activity on Facebook, Twitter and Blogs. By the close of the campaign, the number of people who registered as an organ donor rose by over 25%. The total cost was only €70,000.

Dr Axel Rahmel

Dr Axel Rahmel, Director of Eurotransplant International Foundation, based in Leiden, The Netherlands, emphasised to the workshop the importance of a transparent organ allocation system, based on sound medical and ethical allocation principles, in addressing the needs of patients on the waiting list, making best use of the available donor organs, and increasing public trust of transplantation services.

While main barrier to successful organ transplantation is a serious shortage of donated organs, Dr Rahmel was confident that organ donation could be improved by a well-organised and structured approach.

“A perfect example, Croatia has achieved another increase in organ donation again this year. I assume Croatia will be the European champion in organ donation in 2011 and that was from starting with a donation rate below 10 per million population a few years ago. So what did they do? They adopted some of the Spanish model and put [donor] co-ordinators in the hospitals, focused on organ transplantation and introduced legislation on presumed consent,” he said.

There is currently no legislative framework in Ireland governing the use of or consent relating to the donation of organs, in contrast with most of Europe. At present, a person has to indicate their willingness to donate their organs by carrying a donor card. The Programme for Government promises to legislate for an opt-out system, which assumes everyone is an organ donor unless they have expressed otherwise.

During the lengthy public consultation and preparation of a Human Tissue Bill in 2009 and 2010, the Department of Health explored the case for ‘opt-in’, ‘opt-out’ and ‘mandated choice’ systems of consent for organ donation. While legislation was expected to be published soon after, nothing happened. Health Minister Dr James Reilly told the Dail in October that he intended to “bring legislative proposals for a Human Tissue Bill to Government early next year”.

The new EU Directive acknowledges that several models of consent to donation coexist across Europe and it does not recommend the adoption of any particular model. Mr Mark Murphy, who represented the European Kidney Patients' Federation at the workshop in Brussels, stated that legislating for one donor consent system or another was immaterial.

“None of this directly impacts on the level of organs donated in a country,” he said. “What makes the different is how you approach a grieving family in the hospital about donating a loved one’s organs. The right to say yes or no ultimately rests with family members and no one in a hospital is going to challenge them on that issue, regardless of the legal framework.

“We have to recognise that this is a very difficult time for families and we need specially trained donor co-ordinators in the hospitals who can approach them sensitively, listening to them, answering their questions and explaining the process. That will make the difference.”