Dáil Éireann díospóireacht -
Tuesday, 30 Apr 2013

Vol. 801 No. 2

Organ Donation: Motion [Private Members]

Deputy Tom Fleming

I move:

That Dáil Éireann:

notes:

— the life-saving and life altering gift that is organ donation;

— the incredible generosity such gifts represent on the part of families of donors at times of great loss, and of those individuals who make their wish to be donors known during their lifetimes; and

— the significant contribution made to the lives of organ recipients by those involved in operating, supporting and advocating for organ donation and transplantation services;

recognises that not only do organ donations offer life-changing outcomes for recipients but also represent the potential for significant savings to the State through reduced dependency on services such as dialysis and other acute supports, as proven in the Spanish and Croatian experiences; and

calls on the Government to immediately devise and implement a multi-pronged approach aimed at improving donation services through legislation that will:

— institute a system where everybody is deemed to have opted-in for organ donation, and if any person opts not to be part of that system they sign themselves out of the automatic donor involvement scheme;

— provide for sufficient numbers of specialised donor coordinators to be put in place in all major hospitals of Ireland to create a national network of expert personnel charged with operating this vital service;

— establish a national donor registry that facilitates engagement among prospective donors and is accessible by all acute hospitals; and

— initiate a nationwide and effective public information and education campaign that will promote the vital importance of organ donation, the very real and life-changing difference it can and does make for so many and, most vitally, the urgent need for an increase in donation levels in Ireland.

I wish to share time with Deputies Richard Boyd Barrett, Mattie McGrath, Catherine Murphy and Michael Healy Rae.

In 1999, on average 100 patients were on the waiting list for renal transplant and 145 transplants took place. Today more than 600 people are on the waiting list and at best it is expected that 180 renal transplants will be achieved by the end of 2013. This is the statistic on patient demand in one area of organ donation in Ireland. Numerous patients are awaiting suitable organs which can transform their lives. Transplantation has proven to be so successful on a worldwide basis and developments have occurred through research and various new techniques, which means more and more patients have a chance of benefiting from transplantation. Unfortunately there are not enough donors to match the number of patients awaiting transplants and the numbers have spiralled upwards over the past five to ten years in particular.

Ireland is lagging behind the rest of Europe with regard to proper infrastructure and a lack of public awareness regarding organ donation. I very much commend the Irish Donor Network and the Irish Kidney Association for their tremendous work and endeavours to get the message across to the general public. They have very restricted budgets and resources but they also have wonderful staff and personnel who are very proactive and perform excellent public relations work. Their efforts have been rewarded with almost 5,000 transplant operations since they were established. These include 3,800 kidney transplants, 280 heart transplants, 650 liver transplants, 120 pancreas transplants and 25 lung transplants.

Live organ donors make the ultimate gesture and are true examples of unselfishness and generosity towards their fellow man. They are an inspiration to all citizens to come forward and give their consent in the event of a fatality or a life-ending situation. They give their consent unconditionally and wholeheartedly which benefits the recipient who, in most cases, gains a completely new lease of life.

The Irish active transplant waiting list increases by approximately 10% each year, and the ageing population and increasing incidence of type 2 diabetes are both factors in exacerbating the shortage of available organs. Approximately one in ten people on the waiting list for transplantation will die. This is the stark reality. This figure does not include those who have become untransplantable because they have become too ill for transplant, perhaps because they have developed additional antibodies, and are removed from the waiting list.

In this country in 2011, 165 deceased kidney donor transplants were carried out. To service the needs of renal patients alone, at least 250 to 300 deceased organ donors are needed per annum. This statistic demonstrates very clearly the seriousness of the situation and the vast room there is for dramatic improvement. The annual cost of dialysis coupled with medication is almost €70,000. Over 15 years, which is the average lifespan of a deceased kidney donor transplantation, saves the Exchequer approximately €750,000. In addition, 80% of transplant patients returned to work. This is a very significant matter also which provides a huge boost to the Exchequer and the taxpayer.

There is a need to develop the required infrastructure in the Republic of Ireland. Intensive care donation personnel would be assigned across the health service in line with international practice and the EU Commission action plan. These medical and nursing personnel would underpin the organ donation process by protecting the interests and welfare of those families who chose to donate organs in very difficult circumstances. Historically Ireland has performed proficiently with regard to organ donation and transplantation. However the unmet need of patients requiring organ transplantation continues to grow. A fall in organ donation rates, as witnessed in 2010, would have a negative act on the lives of many of our citizens. The recently enacted EU 2010 directive on organ transplantation requires a strong national organ donation and transplantation system with documented protocols and clear standards of governance and accountability. Recognising the substantial health benefits of organ transplantation, the EU Commission Action Plan on Organ Donation and Transplantation 2009-2015 emphasises a requirement for all European states to identify potential organ donors and support their conversion to being actual organ donors. The programme for Government commits to complying with the EU directive. As a member of the EU we support the Commission's 16 point action plan on organ donation and transplantation.

The Republic of Ireland has three distinct transplant programme. These clinical units are unique in the Irish health service in that although located in three teaching hospitals in Dublin they deliver services for the entire nation. They are distinctive in being the only service providers with the critical mass and expertise to deliver organ transplantation. They are located in, and compete for, resources in acute hospitals which also deliver regional and local services. Most importantly, these programmes are underpinned by the death of an Irish citizen whose family chooses to donate organs in difficult circumstances. This highlights the unique position of these transplant units in the health care sector.

The national renal and pancreatic transplant programme is the longest established and largest transplant programme in Ireland. It is based in Beaumont Hospital. To date it has completed 3,866 renal transplants and 126 pancreas transplants. The Beaumont Hospital transplantation staff also provide paediatric transplantation in Temple Street University Hospital. The renal transplant co-ordination office in Beaumont Hospital serves a dual role, providing renal transplant co-ordination and a procurement service for liver, lung and heart transplantation. The increased number of patients undergoing dialysis has inevitably resulted in a dramatic rise in the number of patients actively awaiting renal transplantation. At present 1,768 patients are being treated by dialysis of which 1,557, which is 88%, are treated by centre-based haemodialysis. In 2000 the waiting list for kidney transplantation was 150, while in 2010, 620 people were awaiting kidney transplantation. By necessity, increasing demand for renal transplantation has seen the re-emergence of living kidney donation.

The live kidney donor programme is expanding and is planning to conduct up to 60 transplants per annum in five years time. If Ireland is to achieve the activity levels of the top European countries such as Norway, Austria, Croatia and the Netherlands, we would need to perform 220 to 250 transplants annually, including deceased and living donation transplants, or 50 to 60 renal transplants. Ireland is ranked eighth in Europe for deceased renal transplantation.

The national liver transplant programme is located in St. Vincent's University Hospital. Since 1993, some 800 liver transplants have been completed. There are currently 22 patients awaiting liver transplantation. Paediatric liver transplantation is managed via Our Lady's Children's Hospital in Crumlin and is conducted in various UK hospitals on their behalf. Ireland is ranked 12th in Europe for liver transplantation.

The national heart transplant programme is based in the Mater university hospital. Since 1985, 300 heart transplants have been performed. There are currently 15 patients awaiting heart transplants. Paediatric heart transplantation is managed via Our Lady's Children's Hospital, Crumlin, and is conducted in various UK hospitals on their behalf. Ireland is ranked 24th in Europe for heart transplantation.

The lung transplantation programme is also located in the Mater university hospital. Since its inception in 2005, some 57 lung transplants have been completed. There are currently 49 patients awaiting lung transplantation in Ireland. Historically, a "buddy" arrangement with the Freeman Hospital in Newcastle, UK, has existed for patients requiring lung transplantation. This is a costly arrangement and the full repatriation of this service should be completed. Ireland is ranked 15th in Europe for lung transplantation.

Organ donation in Ireland is based on a voluntary donation system and occurs in 22 intensive care units throughout the country. Developing a modern organ donation structure would be a significant positive advance in the Irish health service. Historically, there has been no specific investment in organ donation in Ireland. Currently, for instance, there are no key donation personnel deployed in Irish intensive care units. This is a major deficiency that will have to be corrected. There are voluntary link nurses in a proportion of intensive care units across the country who laudably try to foster organ donation.

The three transplant centres have developed independently of each other and have different requirements in regard to organ donation. Each transplant centre has its own organ retrieval team which provides a 24-7 service and travels nationwide to retrieve organs. No formal organ procurement service exists in Ireland. The renal transplant co-ordinators have historically provided procurement - that is donor - co-ordination services for liver and lung, and heart transplantation, as well as its original primary function of co-ordinating renal and pancreas transplantation. They deliver a 24-hour on-call service for the three transplant centres and deal with all organ donor referrals. The renal co-ordinators are responsible for registering each donor, the allocation of organs nationally and abroad and traceability of donated organs thereafter. The co-ordinating teams consist of five wholetime equivalent co-ordinators working a one-in-five on-call rota to provide this service. Therefore, the current transplant co-ordinators have a dual role and carry both donor and recipient co-ordination responsibilities. As well as all the donors, I wish to commend everyone else concerned in this professional service. I also compliment all those engaged in this demanding work on the wonderful medical service they provide across the board.

The European Union has given particular priority to transplantation because of its compelling health benefits and cost effectiveness. This culminated in the 2008 ten-point EU action plan. This action plan proposes that member states should appoint key donation personnel in all hospitals where there is potential for organ donation. Public health and safety concerning organ transplantation has been addressed by EU Directive 2010/53/EC, which was transposed into Irish law in August 2012 by the Minister for Health. That directive requires a strong national transplantation system with documented protocols and clear standards of governance and accountability. The system proposed will give assurance to the public that organ donation and transplantation are national priorities and should help to encourage a greater proportion of the population to be organ donors.

Deputy Richard Boyd Barrett

I commend Deputy Fleming on proposing this motion on what is a tremendously important subject. I understand this is the first time it has been discussed in the Dáil. It has only been discussed on one previous occasion in the Oireachtas when Senator Feargal Quinn raised the matter in the Upper House. This is, therefore, a first for the Dáil and Deputy Fleming is to be commended on that. We are talking about organ donation which can be life changing for many people. While I am not an expert in this field, I have come across people who have been waiting many years for vital organ transplants. They have suffered considerably in the interim while awaiting transplants, and when they get them it utterly transforms their lives.

There are few things more worthy of debate here than a move to improve a situation that can change thousand of lives for the better. It is tremendous that we are talking about this subject and I hope that as a result of this debate the Government will take action to change the lives of so many people who could benefit from the proposals contained in this motion.

The motion proposes that we should have presumed consent, which is a no-brainer. Currently, however, if there are disputes within a family as well as uncertainty and delays, an adjudication of no consent is given. Where somebody or their family say they do not want to give consent, it is right that they should have that choice for whatever reason they choose. In other circumstances where it is less clear, however, it could make a significant difference if the consent was presumed and people had to make a conscious choice to opt out of organ donation. We should all support that.

In so far as I have acquainted myself with this subject, everybody with detailed knowledge of the issue will say that presumed consent is not enough. It is just the first step and we need to go further. The model in Europe is Spain where they have presumed consent which was introduced a number of years ago. In addition, the Spanish authorities discovered that even when presumed consent was introduced it did not make a significant difference to the level of organ donations. It was found that there were many other issues which caused problems in increasing the number of organ donations.

Deputy Tom Fleming's motion also rightly addresses these issues. In Spain, it no longer is simply described as "presumed consent" but now is described as "informed consent". In other words, in addition to having in place that system in which one is presumed to opt in, one also has a major education programme in respect of organ transplantation and its importance, as well as programmes in schools and so on, in which this issue is discussed by children, families and so on. In consequence, people are familiar with it and with the importance of organ donation for saving or transforming the lives of those in need of such organs.

While this aspect of the motion is important, the question of the system for managing organ donation also must be addressed. It is suggested that a system of regional donor co-ordinators is required or possibly even specialised donor nurses in hospitals who are trained in this area. This is to ensure the optimal retrieval of organs in situations in which a possibility might arise to talk to the families involved and to ensure the optimum level of organ retrieval. It also is suggested there should be an independent national donor office to co-ordinate at a national level, but that underneath such an office, the regional co-ordinators and possibly the specially trained donor nurses would operate in the hospitals. Another issue raised in this regard concerned the question of the air ambulance service and the limitations on it in the context of ensuring the rapid and efficient transport of organs to where they are needed. It is a resource issue to ensure the transport capability exists to get organs quickly to where they are needed. On all these fronts, the Government should consider what it can do to provide the requisite resources and back up a clinical and administrative system that can ensure the efficient retrieval of organs and their transportation to where they are needed.

In addition, there should be no question of any cuts. I believe there may have been some cuts to some organisations such as the Irish Kidney Association, which has done such tremendous work on this issue. However, I reiterate there should be no question of any cuts to voluntary organisations or NGOs that are working in this area. All the necessary resources should be provided to ensure the implementation of the best possible system in organ transplantation and donation. Consequently, the Government should take on board these suggestions made by Deputy Tom Fleming and the organisations that are pushing for these measures in order that they truly can offer a life-changing or lifesaving option to as many people as possible, many thousands of whom are currently waiting for such operations.

Deputy Mattie McGrath

I compliment Deputy Tom Fleming on tabling this Private Members' motion and on the work, effort and research he has put into this subject. It is interesting to note there is another function on the playing fields of Páirc an Chrócaigh anocht freisin at which this issue is being discussed with Mr. Joe Brolly. Deputy Fleming has engaged deeply on this issue and, with the help of Ms Yvonne Murphy in the Technical Group office, has worked very hard on it. I also am glad to have some time to speak on the issue. I also understand its value and know a good number of people who have benefited over the years from organ donations and transplants. The joy and physical and mental relief it brings to those people, their families and their loved ones are very important. However, it is a subject on which I am not 100% clear and this is the reason I thank and compliment Deputy Fleming on raising the topic for debate. I hope the Government will be magnanimous and will be forthcoming with a reasonable response to what is a reasonable, well-prepared and carefully crafted motion. No one can really argue about this issue because, as I noted, all Members know people from their constituencies or personal lives who are waiting for such donations.

The issue of education and educational programmes has been mentioned. A huge educational effort must be made to educate everyone and I am first to put up my hand and state I also have a lot to learn about the subject. On the available figures, while they are small by international standards, Ireland has quite good ratings for what is a kind of a fledgling service. I salute all the hard-working consultants, nurses, voluntary groups and NGOs who work in this area and who try to ensure there is good co-operation. While the motion calls for an implied opt-in for everyone, in tandem with an opt-out system, I have an open mind about that. There are some fears given the situation in some countries regarding organ stealing. I refer to people with money, as the dreaded word "airgead" can come in and organs can be very valuable. While this must be described as being completely reprehensible and such acts defy logic anywhere in the world, unfortunately, it has occurred and one must be absolutely sure to be sure in that regard. Were the system to be introduced in which everyone was deemed to have opted in but an opt-out clause system was in place, it would be necessary to run a huge education programme to educate people in order that they understood this point.

Deputy Fleming also presented figures indicating the annual cost of dialysis for patients is €70,000. I acknowledge it is life-saving for them and, yesterday evening, I visited the house of a lady in my constituency who has been getting dialysis for years. While dialysis provides her with life and gives her help in respect of her quality of life, it certainly is a huge expense and a huge challenge for such patients. I note that particular patient is obliged to travel three days a week to Waterford Regional Hospital, which is quite a spin and takes a lot of time. I also have encountered some cases recently involving home dialysis, which is a wonderful achievement. I refer to one of the gentlemen who visited Leinster House ten days ago with the groups that made a presentation in the audiovisual room seeking greater awareness and greater promotion of organ donation and transplants. It was wonderful to talk to a man at that meeting who was able to self-regulate and get his dialysis at home. While his name eludes me at present, it is wonderful that he could do this.

Although the figures are growing slowly, unfortunately, they are not growing quickly enough for those people who do not receive a donation of a kidney or any other badly needed organ. The Joint Committee on Health and Children also invited professional people to appear before it last week to discuss this issue. They comprised quite a spectacular team of highly qualified and trained practitioners in the field. At that meeting, joint committee members learned that co-operation with the United Kingdom and other European countries is very important, as is co-operation with all the hospitals. In their presentation, those expert witnesses also made it clear to committee members that were they to get a huge influx of organs, which is the stated intention of the mover of the motion, Deputy Fleming, and on which everyone is speaking in favour, they lack the facilities, finance and capabilities to harvest them. Consequently, although there are problems in many areas of the health system, Members must ask the Minister for Health to up the ante in this regard, to spare this area from any cuts, to have more specially trained nurses and have in place all the different qualified people.

No time should be lost when an organ transplant is possible, when a person loses his or her life tragically, dies suddenly, by accident, or whatever the circumstances may be. There should be air ambulances and plenty of road ambulance personnel to ensure that if there is that gallant gesture on the part of a person who wanted to donate organs to save somebody else's life then every effort will be made by everybody concerned, with no red tape or bureaucracy. No lack of funding should be allowed to interfere with that outcome, in any place or any way. We must salute the non-governmental organisations and, above all, the families of the many deceased persons who perhaps die suddenly or are killed in a road accident. They have taken that magnanimous and worthy gesture in a family decision to have their relative's organs harvested in order to save the lives of others. We have heard countless people testify to that and have seen the joy it gives to both sets of parents. Unfortunately, we have occasionally seen the sad situation when there is organ rejection, after all the good will and effort on the part of the clinicians and medical personnel, and all the joy this has brought and the hope it has given to the person waiting for the organ, and to the parents. We have seen false alarms and alerts, and rejections but we will have those in spite of the best medicine in the world and the best medical people. However, the joy of saving even one life - and there are countless lives - is so much worth looking for and striving towards rather than having negativity or blockages.

I compliment Deputy Fleming and his staff on introducing this motion. It will enable Opposition Members and those in the Government to consider it in all seriousness and in the responsible way we should, so that we can ensure there is funding and that there are no roadblocks in this situation.

Deputy Catherine Murphy

I too thank Deputy Fleming for tabling this motion. As others have noted, when something of this kind is tabled it forces one to look at the situation and some of the things one finds are astonishing when one thinks one has an idea of how things are. I hope the motion will be supported by all sides tomorrow.

One aspect I find astonishing is that Ireland has never provided any legislative basis for organ donation. We are the only European country not to do so, which I find incredible. It is true that organ donation rates in Ireland are nowhere near the rates we need to cover comfortably all the scenarios that arise annually. At present donation rates can fluctuate wildly. There can be reasons for this, but in 2010 alone organ donation rates spontaneously dropped by 28%. Unfortunately those who were waiting for organ donations were particularly affected in that year but the list also builds up because there is a backlog of those who are well enough to stay on the list while at the same time there is a rapidly growing waiting list. Take, for example, one of the most common procedures in the transplant family - renal transplants. Since 2000, the number of people on waiting lists has risen by 413%, an astonishing rise, yet donation rates have fluctuated throughout the decade.

The move to an opt-out system as recommended by the motion is one we should consider for Ireland if it will increase donation rates but this should not be attempted if done in isolation. It is important to note that much of the medical and expert opinion in this country claims that improvements in clinical practice have far greater consequences for raising organ donation rates than a simple switch to an opt-out system would have. I am glad to see that the motion supports what the medical experts are saying in this respect. That is where we need to focus our attention because those people who are at the coalface and who see what works are the ones to whom we should pay attention.

Many of the experts who gave evidence at a recent health committee meeting told of how a move to an opt-out system would likely be beneficial to their work but some of them stressed that they would prefer a soft opt-out option because the family of a deceased relative would have the final say. Above all other concerns, what has been very clear is that clinical practice is the key element which needs to be properly resourced in order to achieve an increase in donation rates. That is something I urge the Government to take from this debate. Whatever system we eventually move to, and it is imperative that we change how we do things, we need to have, at the same time, a prominent public awareness campaign about donations. We need to tell people just how bad the situation is. People are very generous. Even if the system is not changed we must continue to remind people about donations.

We must also look at the resources given to organ donation services. Currently, as referred to, there is the National Organ Procurement Service, based in Beaumont Hospital, which has six transplant co-ordinators. That is all there is available nationally. We must look at putting transplant co-ordinators in all acute hospitals in the State, or at least regionally, a point recently made at the health committee. In the United Kingdom, which remains an opt-in system, donation rates have increased by 50% in the past five years, an outcome primarily put down to the deployment of 250 specialist co-ordinators throughout that country.

Money may have been spent unwisely in this country. Right now it costs €70,000 every year to keep a person on dialysis. We need to deal with prevention. Our diabetes rate is one cause of the problem. Other countries have impressive organ transport systems, with those in Scandinavian countries being a case in point. They cover 25 million people and extend as far as Greenland. Ireland has a very dedicated transport unit. We have seen situations where this did not work to the optimum, as in the case of Meadhbh McGivern from County Leitrim who, thankfully, did in the end get a donation and received her transplant. An organ donation register is important. There are significant advantages to having a list of pre-approved donors who are cross-matched. Many things can be done.

Again, I thank Deputy Tom Fleming for tabling this motion. I acknowledge the work Joe Brolly, himself a live donor, is doing in terms of raising the profile. The GAA is a very good partner in ensuring this issue is brought to every town and village in the country.

Deputy Michael Healy-Rae

I thank Deputy Catherine Murphy and the Technical Group for allowing me some of their time to speak on this very important motion. I also thank and compliment my colleague, Deputy Tom Fleming, for his research and the work he has put into this very important subject.

There are many different facets to this debate and I hope the Government will see the merit in this motion. I certainly hope it will see its validity and sincerity and that there should be no requirement for a vote tomorrow. There should be cross-party agreement on the thrust of the motion. Every one of us knows people who have been waiting for years for an organ transplant, people who are on dialysis or suffering really bad health. I wish to put on the record of the Dáil that I had a very close friend who was waiting for a transplant. A call came in the middle of the night and this person got as far as making it to England for the transplant but unfortunately it was cancelled at the last minute. That was a tragedy, and it was her last chance. She was a beautiful young girl and she never got her transplant. Very sadly, she lost her life while waiting for it.

That returns to the issue of whether one is included "in" unless one opts out.

I have an open mind on it. We would have to give the matter careful consideration and allow all sectors of society to participate in a wide-ranging debate on whether we should go down that road. I can see the benefits it would bring to those waiting for transplants by making more organs available, but we would have to decide whether it was something with which society would be happy.

Thanks to Deputy Tom Fleming, we have an opportunity to debate these issues tonight and tomorrow night. This is the first step in deciding whether to make such a change. We are all concerned about the people who are ill and awaiting transplants.

Minister of State at the Department of the Environment, Community and Local Government (Deputy Jan O'Sullivan)

I welcome the opportunity to address the House on this important issue and thank the Deputy Tom Fleming for tabling the motion.

We are all aware of the enormous difference an organ transplant can make to a recipient's life. However, we are also aware of the worldwide shortage of organs available for transplantation and the significant challenge this poses to health services both in Ireland and throughout the world. That is why we must all do our part in encouraging organ donation in order that more organs become available for those who need them. Ireland has a good history of organ donation and transplantation. A total of 5,182 transplants were performed to the end of 2012. The first renal transplant took place in January 1964 and we will be celebrating 50 years of renal transplantation next year. During 2012 there were 78 deceased donors and 32 living kidney donors. A total of 239 solid organ transplants were performed in the three transplant centres in Ireland. These centres are the Mater hospital for heart and lung transplants, Beaumont Hospital for kidney and pancreas transplants and and St. Vincent's University Hospital for liver transplants. However, the Joint Committee on Health and Children was informed last week that over 650 people were awaiting organ transplantation.

The success of any organ procurement and transplantation system is contingent on its capacity to fulfil the following three interconnected objectives: good outcomes in terms of quantity and quality of organs; maintenance of public trust in the transplantation system; and respect for ethical principles. A priority for the health system is to ensure every link in the donation and transplantation chain is safe. EU Directive 2010/53/EC on the quality and safety of organs intended for transplantation which was transposed into Irish law by SI 325 of 27 August 2012 sets standards for quality and safety. In its role as competent authority under these regulations, the Irish Medicines Board is working with the HSE's national organ donation and transplantation office to ensure organ procurement and the activities of the three transplantation centres meet these standards.

In addition to mandatory standards for quality and safety, the European Union has set out a ten point action plan on organ donation and transplantation which aims to strengthen co-operation between member states in order to increase organ availability and enhance the efficiency and accessibility of transplantation systems, while at the same time improving quality and safety. Ireland is prioritising areas for attention from this action plan, particularly those relating to donor co-ordination and public awareness of the benefits of transplantation which will positively impact on organ donor rates. As the need for organs increases, various strategies are being explored in order to increase donation rates. These strategies include the expansion of the criteria for declaring death, increased living donation, opt-out policies and economic incentives. The strategies have the ultimate goal of saving lives and improving the quality of life of transplant recipients. However, all of the strategies are morally debatable and if they are to be pursued, it is important that they do not violate socially accepted ethical norms.

In Ireland, when a potential organ donor is identified, the person's family is asked for consent to allow organ donation to take place. This is known as express consent or an opt-in process to becoming an organ donor. In other words, the decision to become an organ donor rests with the family of the deceased. The programme for Government envisages the introduction of an opt-out system of organ donation with a view to improving the availability of organs for patients in need of transplantation. The introduction of this opt-out system will mean that the consent of an individual to organ donation is deemed or presumed to have been given, unless he or she objected during his or her lifetime. If a person does not wish to become an organ donor after death, he or she will need to register an objection during his or her lifetime, a process known as opting out. The deceased's family or next of kin will still have an important role to play in the process of organ donation. While the next of kin will not be required to give consent to the donation itself, he or she will be asked to provide as much information as possible on the deceased's medical and social history. I wish to stress there will be no instance where organ donation will proceed against the wishes of the deceased's family. The system to be introduced could, therefore, be described as a soft opt-out system.

The logistics of establishing an opt-out system of consent are complex. A secure IT system must be established and maintained. Hospitals will need to have reliable and continuous access to the latest recorded wishes of potential organ donors. The system will need to define who is responsible for the documentation, who is allowed to enter records and who has access to the information recorded. It will also need to ensure records are valid and correctly assigned. In the absence of a personal unique health identifier, the identification of individuals and the maintenance of a national registry of either potential donors or those who opt out is problematic. An extensive and well resourced communications strategy will be required. Measures will have to be put in place and sustained to protect the rights of vulnerable groups and marginalised members of society.

The Department of Health will commence a consultation process on the introduction of an opt-out system of consent in the next few weeks and will be inviting interested parties to submit their views on the practical aspects of introducing the new system. We will pose a range of questions, allow approximately six weeks for consultation, distil the information received and then organise a focused workshop on the findings of this consultation. The workshop will allow clinicians, Irish donor network representatives arid other relevant parties to give direction to the next steps in terms of the shape of the legislation and what is needed in the health system to implement a soft opt-out system.

The introduction of an opt-out system is an integral element in changing our cultural attitude towards organ donation. We need to make organ donation the norm in Irish society and the default position for those who die in circumstances where donation becomes a possibility. Ireland is among a minority of EU member states, including the United Kingdom, the Netherlands and Germany, that do not have an opt-out system. However, changing the system of consent is just one aspect of a package of measures required to increase organ donation rates. In this regard, the Department of Health, in conjunction with the HSE's national organ donation and transplantation office, is considering what practices and organisational changes, alongside changes to the consent system, could further improve donation rates in this country. The director of that office is working with relevant experts in the HSE and hospitals to develop a plan for the introduction of changes and improvements in donation and transplantation systems and practices in order that as many patients as possible benefit from a proactive and successful programme of organ donation. This includes the identification and deployment of donor co-ordinators in hospitals across the country. The director also regularly interacts with the Irish donor network in order to take account of patients' needs. The Minister for Health has also met representatives of the network and assured them that they will play an active role in shaping policy and actions in this important area.

I support the motion and assure the House the Department of Health will continue to collaborate with the HSE, voluntary organisations and health professionals to raise awareness of organ donation and enhance donation and transplantation rates for both living and deceased donors.

Acting Chairman (Deputy Peter Mathews)

We are expecting a couple of Deputies in the Chamber to make their contributions in the next few minutes. Perhaps we will suspend for five minutes.

Deputy Mattie McGrath

This is very disappointing.

Acting Chairman (Deputy Peter Mathews)

It was a matter of timing; the Minister of State concluded her contribution in half the allotted time.

Deputy Mattie McGrath

I am aware of that.

Acting Chairman (Deputy Peter Mathews)

Is it agreed to suspend for ten minutes?

Deputy Mattie McGrath

While I agree to the suspension of the House, I find it disgraceful that, apart from the Minister of State, no other Deputy on the Government side has bothered to come to the Chamber to speak on such an important issue. It is an insult to the Technical Group which tabled the Private Members' motion, in particular to Deputy Tom Fleming, who moved it. Surely the issue of organ donation is worthy of debate and discourse.

Acting Chairman (Deputy Peter Mathews)

It is regrettable that we must have a short interlude.

Deputy Mattie McGrath

It is more than regrettable. Not one Government Member has been present throughout the discussion.

Acting Chairman (Deputy Peter Mathews)

One of the Deputies who was due to speak approached me a moment ago to ascertain the timing of contributions. It is understandable that speakers chose to anticipate when they were due to contribute. We will suspend for eight rather than ten minutes as I have spent two minutes explaining the position.

Sitting suspended at 8.22 p.m. and resumed at 8.30 p.m.

Deputy Regina Doherty

I welcome the opportunity to contribute to the debate on an issue which must be close to everyone's heart. As a member of the Oireachtas Joint Committee on Health and Children, I thank the individual organisations and lobby groups that made such valuable contributions to the committee's hearings on this matter during the past two weeks. I take this opportunity to acknowledge the excellent standards observed by and dedication of our transplant co-ordinators, surgeons and teams. I also wish to acknowledge the work of the transplant teams in our hospitals. Without their dedication and skill and the support of the patient groups, particularly in the context of promoting transplantation, donation and transplantation rates would be considerably lower than they are at present.

There is little doubt that an increase in access to organs suitable for transplantation would improve the prospects for survival, rehabilitation and quality of life of many more patients. Such an increase would also be beneficial to the health service as a whole and, ultimately, to the taxpayer. The proposed change to a soft opt-out model is a development I wholeheartedly support but only if it is part of a package of measures designed to improve organ donation and transplantation in Ireland. It would be wrong to represent an opt-out system as a panacea for improving donor and transplant rates without addressing the gaps and weaknesses in the existing system. Legislation and education alone are not enough. More resources are required in order to deal with the potential expansion in the service and a robust infrastructure must be put in place to ensure that discussions with families in respect of organ donation are carried out in the right way, at the right time and by the right people.

The principal question which must be addressed is how we might best achieve this. A variety of potential solutions have been advanced by different individuals, organisations and the health care profession. The evidence and experience relating to various jurisdictions suggest that a suite of measures might be used to significantly increase the level of organ donation. Such measures might include the appointment of an appropriate hospital-based specialist, educational measures directed at the public and the medical community, better access to intensive care beds and measures to improve organ donation after cardiac death.

The package of essential measures to accompany a change in donor law should contemplate a number of things, including the appointment of a network of donor co-ordinators being assigned to the major intensive care hospitals. These medical and nursing personnel will underpin the organ donation process by protecting the interests and welfare of those families which choose to donate organs in difficult circumstances. The national organ donation and transplant office should be given sufficient resources and status in order to allow it to undertake its functions. The office's existing level of resources is inadequate. A national online organ donor registry should be established in order to provide potential donors the opportunity to indicate if they wish to opt out of all or some forms of organ donation. For example, a person may wish to donate one organ but may be reluctant to donate others. The process should be allowed to facilitate such individuals. Specific measures to improve the rate of lung and heart transplantations are needed. A national organ procurement office, independent of all the hospitals, should be established in order to accommodate the transplant standards required under current EU directives. In addition and irrespective of the change to an opt-out model, greater support must be provided by the Government in respect of the annual public awareness campaigns relating to organ donation. Such campaigns must be undertaken in partnership with the patient groups.

Legislation is extremely important. However, I wish to strongly associate myself with the view expressed by others to the effect that, in the absence of robust organisational and infrastructural development to support this endeavour, any legislative framework is unlikely to achieve its maximum potential in increasing donations. It is incumbent on the Government to ensure that there is a dedicated IT system in place and that this will be accompanied by the necessary strategic infrastructure. Above all, without national monitoring there can be no measuring of the system when it is implemented.

I am humbled by the wonderful families which make the very unselfish decision to donate their loved ones' organs in very difficult and traumatic circumstances. Without those families, we would not even be engaging in this debate and countless numbers of people would not be able to continue to lead healthy and fulfilling lives. I am happy to support the motion.

Deputy Anthony Lawlor

I thank Deputy Tom Fleming for tabling this very worthwhile motion. I hope it will result in the human tissue Bill being brought forward much more quickly.

I must admit that those who donate and who are still living are extremely brave and courageous individuals. James Nolan's sister donated her kidney in order that he might survive. I am also aware that Joe Brolly, a high-profile individual, donated one of his kidneys. I did not realise until four hours ago that I could become a donor simply by completing the form on the back of my driving licence. All people who wish to become donors need to do in this regard is what I am doing now, namely, putting an X in the multi-organ donor box and signing the form. I am happy that I am now a donor, although this may mean that I might be more use dead than alive. In the case of the new credit-card style licences, inclusion of the code 115 on the back indicates that a person is a donor. I hope that by means of my contribution to this debate, people will come to realise the simple way in which they can become organ donors and quite possibly save the lives of others when they themselves have passed away.

Deputy Martin Heydon

I welcome the opportunity to contribute to the debate on the motion. This matter is close to my heart, particularly as I work closely with the Punchestown Kidney Research Fund and am aware of the great work done for it by James Nolan and others. One of the reasons this matter is so close to my heart is that I lost a kidney when I was 18. Thankfully, and touch wood, I am in very good health and I hope to remain so. However, one never knows when one might need an organ donation. It is amazing when one realises the sacrifices which live donors make. The Punchestown Kidney Research Fund has been up and running for 24 years and has raised €1.2 million by holding the charity kidney race on the final day of the Punchestown racing festival each year. While that money has been really well spent, equally important is the additional awareness that has been created on foot of the publicity relating to the race.

I agree with the concept of the opt-out clause. I commend people such as Joe Brolly who have raised the profile of this issue in recent times. However, we must be careful that we do not suggest that one simple measure will solve all of our problems. If an opt-out clause were put in place tomorrow, then the number of suitable donors who would die in the next few weeks would be greater than the total number of transplantations carried out last year. We need to work towards introducing such a clause and doing so will put pressure on the relevant individuals to ensure that there will be a sufficient number of teams available to harvest and retrieve organs. In addition, there must also be a sufficient number of co-ordinators to deal with the process relating to approaching families. The worst time to broach the subject of organ donation with a family is when it has just lost a loved one. Doctors or surgeons who lose patients and who are obliged to break the news to the families involved may not always raise the subject of organ donation. That is where specially trained co-ordinators come into play. I am of the view that we need more such co-ordinators and more specialist teams.

The unit in Beaumont Hospital is extremely impressive but it would not be able to deal with the consequences of an opt-out clause. This is a something we must be cognisant of, although I am not stating that what is proposed is not worth doing. The current annual cost of dialysis for one patient is between €65,000 and €70,000. The cost of a transplant is in the region of €45,000 to €50,000. The annual costs thereafter would be €10,000 and these would relate to hospital visits, paying for immunosuppresant drugs, etc. I know people in Kildare who have undergone extremely successful transplant procedures. They have benefited hugely from these transplants, particularly in the context of the obvious improvement in their quality of life. These individuals were previously in receipt of illness benefit because they could not work and had to claim from the State in order to survive. I refer, in particular, to a couple of people in the Newbridge area who have returned to full-time employment and who are happy to be paying PRSI and PAYE. They now have a great outlook on life. Above and beyond the various human considerations, the financial benefits of moving towards an opt-out model are obvious. I am aware that the Minister is very much on board in this regard and I look forward to progress being made in the coming years.

Deputy Tony McLoughlin

Since 2005, 121 people who would otherwise have died due to vital organ failure have been able to lead active lives because of the generosity of donors and their families. A couple of miles away lies Beaumont Hospital, which has for many years taken into its care people who have suffered serious brain injuries resulting in there being no hope for their survival. Eventually, decisions are taken by their loved ones to switch off their life support, which was artificially keeping them alive. Many of those loved ones must decide on whether to allow the deceased's vital organs to be used for transplantation. Thankfully, many make this decision, but many more do not, perhaps because of immense grief or a lack of knowledge of the deceased's wishes.

I understand the Government is supporting this motion. I welcome its commitment to introduce an opt-out system of organ donation with a view to improving the availability of organs for patients in need of transplantation. The opt-out system of consent will ensure the health professionals involved will not actively need to seek the deceased's family's express consent for organ donation. Instead, consent will be presumed unless the person has, while alive, registered a wish not to become an organ donor after death. People will be reassured by the fact that families will be consulted. If they have objections, the donation will not proceed. This is a welcome provision.

I welcome the new initiative from the Department of Health and the Road Safety Authority, RSA, which will allow people to indicate on their driver licences if they are willing to be organ donors. While the number of donations has been increasing in Ireland in recent years, we are facing a constant challenge to increase the number of people who carry organ donor cards. Many people may be willing to be organ donors, but they might not have donor cards or have discussed the topic with their families.

The year 2011 was a landmark one for organ donation, with 93 deceased organ donors allowing for 248 organ transplants to take place. This record will improve in the coming years, something that will be allowed for by the Government initiatives to which I alluded as well as others that I do not have the time to cover. I commend the motion to the House. I also commend my colleagues in the Technical Group for using their time to highlight an important issue.

Deputy Billy Kelleher

I welcome the opportunity to elaborate on this matter following the health committee's discussions on it in recent weeks. The presentations made by various witnesses were interesting in that, while there was no unanimity, they all shared the same perspective - how best to increase the number of people who are willing to donate their organs and get donor cards. Even if nothing comes of this debate other than the fact that it highlights our need to become more aware of the opportunities that we could provide people by becoming organ donors when we pass away, it would still be worthwhile. In the coming weeks, the Government will start a discussion process with society and stakeholders to determine the best way to encourage as many people as possible to donate organs.

Interesting points were made at the committee hearings and varying views were expressed on the soft and hard opt-outs and whether it should be left to people to acquire donor cards. One point made by all groups that presented was that the family should always be consulted. Regardless of whether a soft or hard opt-out was taken, the family would decide. However, if an individual insists on his or her organs being donated, should we not be compelled to comply? We should debate this matter. A will involves many testaments, which are carried out as planned when a person leaves this Earth. In terms of organ harvesting, the family is still consulted. I would like to believe that the opinion of a person's family would be taken on board, but if I was determined to have my organs donated, I would argue that my wish should be complied with regardless of my family's opinion.

This should not be a divisive issue. Society, stakeholders, voluntary organisations and those who have been at the coal face for many years should be involved in this discussion if we are to raise awareness and encourage as many people as possible to donate their organs.

Let us consider Ireland's ranking in terms of organ donation. We are well placed, but we could be much better. Significant advances have been made at St. Vincent's and Beaumont hospitals in terms of the ability to transplant. It would be upsetting for society if, having made considerable technological and medical strides in saving people's lives, not enough organs were available to meet demand. The committee and, in terms of this debate, the House have been unanimous and to the fore in this regard.

We can all endorse this motion to varying degrees. Given some people's opposition to it, however, dividing the House - this would not necessarily happen, as there is broad agreement - will not be helpful if we want to bring them around. The Government's consultation process in the coming weeks should be broadly based and hear all opinions. We should drill down through the statistical data, given the various opinions on the most successful method of encouraging people to donate. I examined this question during the committee's hearings in light of the statistics presented. The committee probably does not have the resources to investigate. We heard from witnesses with contrary views and statistical interpretations, but it would be worthwhile if the HSE or another body could examine other countries - Spain and others have been mentioned - in terms of whether the soft option or presumed consent is the way to go.

The fluctuations in organ donation rates and donor numbers in recent years are interesting. Perhaps this is because the number of people involved is small, there are no trends and the fluctuations are owing to other reasons. I have spoken to a number of live donors. It is probably the bravest act possible. The thought of donating an organ makes me queasy, to say the least, but it is magnificent and exhilarating that a human being is willing to donate, in life, his or her kidney to save someone else. However, there are many others.

They may not have been fully aware of the importance of organ donation or just have never thought about it in any way. Many people pass away whose organs could have been used but were not used because we do not have the critical infrastructure based around trauma centres, cardiac units and intensive care units to approach families in a structured way to discuss the issue with them. It is important to consider the point.

One of the main points made was that regardless of the recommendation that results from the consultation process, the key issue is the provision of resources. Allocations must be made to the centres for organ harvesting and it is also necessary to work with the families of the deceased. Resources must be put in place to provide co-ordinators who can take a compassionate approach to the families of donors and potential donors.

Consultants in various hospitals do their best to save their patients and when it becomes obvious that there is no hope they approach families to discuss with them the possibility of organ donation. Consultants are exceptionally busy people who work at the coalface and are under constant pressure. Further supports are required for medical professionals. For example, bereavement counsellors should be available to talk with families as well as co-ordinators trained in the area. It is too much to expect that the doctor or surgeon dealing with the patient must also deal with the family. It is important to provide supports to facilitate organ donation and to liaise with families in a meaningful way.

Cé mhéad nóiméad atá fághta agam?

Acting Chairman (Deputy Peter Mathews)

There are strictly five minutes left.

Deputy Billy Kelleher

Are you being strict, a Chathaoirligh?

Acting Chairman (Deputy Peter Mathews)

Deputy Colreavy will follow with five minutes and we adjourn at 9 p.m.

Deputy Billy Kelleher

I would like the Government to introduce a number of changes but I do not wish to place the onus on the Government as it is a societal issue. We should discuss the matter as a Parliament and as a people, especially those involved in advocacy, those who have benefited from an organ transplant and living donors. We must come to a mature decision on the best way forward. I would welcome the provision of empirical evidence to establish whether we should introduce the soft option – presumed consent, and whether hard consent or the current arrangement works best in similar countries.

I spoke about illegal organ harvesting in the committee last week. It is shocking to read some of the stories in that regard from other parts of the world. We must examine the issue. We must put pressure on the European Union to get it on the agenda internationally. We have a huge problem across the world with people being kidnapped and murdered in order to harvest their organs. In some cases vulnerable, poor people sell their organs. The trade is despicable and must be examined. Organs are being taken from people under duress through financial inducements in many cases or the threat of a gun or knife. It is happening on a daily basis. The organs are being implanted in people in First World countries because the necessary technology is not available in the countries where they are harvested.

We must examine the trade in illegal organs. I have read frightening reports, for example, that in Somalia and elsewhere in the Horn of Africa, people are being kidnapped and botched surgery is carried out to remove kidneys resulting in the death of victims. Such a practice is abhorrent. In some countries in Latin America and Asia people are induced to sell their organs, for example, a kidney. That is something we cannot tolerate. The more people that are aware of the value of organ donation and the life-giving chance it can provide the more likely they are to donate organs.

The debate is worthwhile. Varying views are held. I hope the debate does not become divisive. We have enough such debates in this House. It would be unfortunate if the views of one side or the other became entrenched because the winners are those who receive the organs and in many cases the donors, as we heard from the presentation by the Irish Kidney Association. We must strike a balance. Whether the donor is alive or deceased the gift of an organ can make such a difference. I heard Joe Brolly and others speak about the campaign on presumed consent and the soft opt-out. Regardless of what emerges from the discussions and the subsequent Government decision, the debate has raised awareness levels. I was previously unaware of the impact such decisions have on people’s lives.

I met people who have had transplants. Dr. Patrick Hennessy, a GP, was a dialysis patient for many years. He publicly advocated for organ donation. His family has been supportive of the Irish Kidney Association and of what needs to be done. Families derive great benefit from knowing that in hopeless cases when their loved one passes away that hope has been transferred to someone else who gets an improved quality of life. I commend the broad thrust of the motion to the House. I hope the debate does not become divisive and that we reach a situation where everyone in this country would want to donate their organs when they pass on.

Acting Chairman (Deputy Peter Mathews)

Deputy Colreavy has five minutes but the clock might be against us because we are adjourning at 9 p.m.

Deputy Billy Kelleher

I am sorry.

Deputy Michael Colreavy

I thank you, a Chathaoirligh.

Acting Chairman (Deputy Peter Mathews)

I am willing to go the extra two minutes with the agreement of the House.

Deputy Michael Colreavy

I might not need it. I apologise as I missed much of the debate as I was at another meeting. I am at a disadvantage as I do not know whether the Government has agreed to accept the motion.

Deputy Jan O'Sullivan

Yes. The Government has agreed to accept it.

Deputy Michael Colreavy

I am delighted to hear it. I compliment the Technical Group on tabling the motion. I would have been disappointed and somewhat perplexed if the Government had contested it.

The vast majority of people in this country would agree to donate their life-saving organs post mortem. I will confine my remarks due to the lack of time and the fact that one goes through an established process for the donation of living organs. Despite the fact that most Irish people would probably be willing to donate their organs post mortem, we continue to have a serious problems with the supply of organs. It is undoubted that people are dying and suffering unnecessarily and that their quality of life is diminished because the State has not got its act together on consent for organ donations.

Current legislation, policy and practice dictate that citizens must opt into agreements to donate their organs. The motion seeks to change that so that a person who dies and is deemed to be suitable for organ donation would be deemed to have opted in unless he or she had opted out. That would reflect the fact that the majority of Irish people would be prepared to have their organs used to save and improve the lives of others but that many among them simply neglect to opt in. Another consequence of the current opt-in requirement is the need for medical staff to broach with relatives the delicate subject of organ donation immediately prior to or following the death of a loved one. That should never have to be done. I suggest a caveat in the legislation and policy to the effect that family wishes should never be overruled, even in an opt-out scenario.

The transition to an opt-out system of organ donation would have to be well publicised and handled with great sensitivity. Those who wish to opt out must not be made to feel like lesser human beings. People have and should continue to have the right to opt out.

I am delighted to hear that the Government is accepting this motion. I am also delighted that there is all-party consensus on the issue. Where organs were scarce, we could not blame a lack of infrastructure or a shortage of qualified professionals to use those organs. In the hopeful event that organs now become more readily available, we will have to put in place the infrastructure that is needed to make sure that the organs can be harvested and used in a timely fashion in order to dramatically cut the waiting lists for transplants that we currently have. At the end of the day, an opt-out system is not of much value unless people who need organ transplants get them as speedily as possible.

I thank the Technical Group for tabling this motion. I also thank the Minister of State for indicating the Government's willingness to accept it.

Debate adjourned.

The Dáil adjourned at 9.05 p.m. until 10.30 a.m. on Wednesday, 1 May 2013.