Dáil debates

Tuesday, 24 January 2023

Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Bill 2022: Second Stage


5:40 pm

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context

I move: "That the Bill be now read a Second Time."

It gives me great pleasure to introduce the Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Bill 2022 to the Dáil. It is important landmark legislation and includes provisions around organ donation and transplantation, post-mortem practice and procedures, anatomical examination and public display of bodies after death. Crucially, this Bill will embed in law the concept that consent, where appropriate, is the defining principle around these sensitive areas, and will establish a regulatory framework for the conduct of these activities. As committed to by the Government, the drafting of this Bill has been prioritised in order to provide a national legislative framework for organ donation and transplant services in Ireland for the first time. In addition to addressing organ donation and transplant, the Bill will bring the State in line with international best practice in relation to governance of activities relating to human tissue. A priority for me as Minister in bringing forward this legislation is to support organ donation and transplantation in Ireland and to make organ donation the norm in situations where the opportunity arises. This Bill will help achieve this through the introduction of an opt-out system of consent, and by creating pathways for living organ donation and altruistic donation.

Organ donation is a precious gift and often, the most precious of gifts. It saves lives. Our aim is to help increase the donor pool in Ireland while always fully respecting the wishes of individuals and their families. This approach is strongly endorsed by many of our leading charities who have campaigned for such a system for many years. I acknowledge the presence of some of those campaigners in the Gallery today. For many years, many people have advocated for the move to a position that this Bill will now introduce. An opt-out system, as we know, has already been introduced in some other European countries, including Spain, where the move has helped ensure a very high donation rate.

As we introduce the Bill today, there are approximately 570 men, women and children around Ireland on a transplant list. That is 570 families with men, women and children who are often very sick and who are often in urgent need of organ donation. They are regularly waiting for contact from the health services to say that an opportunity has arisen. Around 570 men, women and children are waiting. Last year, there were 250 organ transplant procedures. By significantly increasing the organ donation pool, which we believe this Bill will, we can go a long way - and hopefully all of the way - to making sure that those who are waiting for transplants in the coming years will be able to access that quicker than has sometimes been the case up to now.

The success of an opt-out system relies on people knowing about their options and being able, easily and quickly, to opt out if that is their wish. This is not about forcing people into donation. It is about making it as easy as possible for an individual’s willingness to donate organs after their death to be acted upon. The Bill also recognises the need to introduce safeguards to protect the integrity of the human body before and after death. The background to much of the proposed legislation is the report on post-mortem practice and procedures. The report was prepared following the discovery, in the late 1990s, that it was hospital practice for many years to perform post-mortem examinations and to retain organs of deceased children without family knowledge or permission. I deeply regret that similar issues and concerns have arisen in our hospitals more recently. I want to emphasise that this Bill has quite rightly been drafted following extensive consultation with stakeholders. This has included two public consultations on the proposals, as well as direct contact with interested parties.

The Bill is divided into six Parts, comprising 105 sections. This not only highlights the complexity involved but demonstrates the substantial considerations and work done to develop overarching legislation across several distinct fields. I acknowledge the work done by all involved, including officials in my own Department and across the Government, as well as all of the time that stakeholders and interested parties have given over to making sure we get this law right.

I will now go through the Parts of the Bill. Part 1 is preliminary and general. It provides a list of definitions to aid interpretation of the legislation and includes general provisions for the storage, handling, transportation, disposal and return of organs and tissue. It allows the Minister for Health to introduce guidelines and regulations to support and underpin the legislation. It also introduces provisions for any designated family member to be consulted prior to donation of organs and tissues from deceased persons and for the conduct of non-coronial post mortems.

Part 2 of the Bill deals with donation and transplantation matters and is divided into six chapters, comprising 28 sections. It addresses the transplantation of both organs and tissues and outlines the requisite consent provisions with regard to deceased and living donors. Transplantation is currently the only available treatment for end-stage heart, lung and liver failure. It is also the most cost-effective treatment for end-stage kidney disease, and it brings enormous clinical and social benefits to patients who would otherwise remain on dialysis. The success of transplantation, in terms of life years gained and improvements in quality of life for patients, as well as advances in treatment generally, mean that there are now more patients for whom transplantation is considered to be a viable option than ever before. At the end of last year, 572 people were on transplant waiting lists in Ireland, 512 of whom were on the kidney transplant list. Globally, the most significant problem affecting transplant programmes is the shortage of suitable organs to transplant.

The Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Bill aims to increase organ donation and transplantation in Ireland through the introduction of new measures including an opt-out system for consent and pathways for living donation by adults, including non-directed altruistic donation. Currently, the decision on organ donation in respect of a deceased person rests entirely with the next of kin, including where the deceased person held an organ donor card or had indicated their wish to be an organ donor on their driving licence. Under the new opt-out system, all adults in Ireland will be considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate on an opt-out register or are in one of the identified excluded groups. This is often referred to as deemed consent, and will apply to the donation of the heart, lungs, liver, kidneys and pancreas. A separate consent process will be undertaken for the donation of other organs or for tissues and cells from deceased donors.

However, in all scenarios, family members will continue to be consulted before donation takes place. The wishes of the deceased should be central to the decision but if the family objects to the donation, then it will not proceed. I want to be absolutely clear that in no way does the move towards an opt-out approach mean that individual choice on this most sensitive issue is being threatened or eroded. Those who object to organ donation, for whatever reason, will be able to record their objection on a new register that will be established under the legislation. In such cases, their wishes will be respected and their family will not be approached on the issue of organ donation. It will be possible for individuals to remove their name from the register at any time.

The Bill also provides a framework for living donation.

This has become an increasingly important source of organ donation and it is essential that this type of donation is underpinned by law. The legislation further introduces provisions for non-directed altruistic donation. This means that those who wish to donate a kidney while they are still alive to someone they do not personally know will now be able to do so. At the moment, people who wish to do this must travel to another jurisdiction. This means, of course, that those waiting for an organ transplant in Ireland do not benefit from this most generous action.

Part 3 of the Bill covers pathology practice or post mortems and is divided into three chapters containing a total of 21 sections. The Bill introduces consent provisions for non-coronial post mortems and sets out a clear framework for how consent should be obtained. I want to particularly draw the attention colleagues to a significant departure from what was approved in the general scheme of the Bill.

The legislation now includes provisions that will also bring certain aspects of coronial post-mortem practice under the framework of this Bill. These provisions reflect the reality that approximately 98% of post mortems conducted in Ireland are performed under the direction of the coroner. The Bill amends the Coroners Acts 1962 to 2022 to introduce a better communication and information sharing process with families in cases where a coronial post mortem is required and where material may be retained for investigative purposes. These important measures are what families impacted by recent controversies have called for and it is important that we respond positively and show that we are listening and learning.

Finally, this part of the Bill provides a framework for obtaining consent for the use of material retained from post-mortem practices by third parties, including pharmaceutical companies, for commercial purposes. The provisions are not intended to regulate the practice of medical research but rather, in keeping with the overall thrust of this legislation, are drafted to ensure that consent is of paramount importance and must be obtained from the family of the deceased before any third-party use. The Bill includes an additional safeguard by mandating that use of material for any commercial purposes must first be authorised by the person in charge of the hospital where the post mortem took place.

Part 4 of the Bill deals with anatomical examination and updates the licensing system for schools of anatomy. It is made up of 23 sections. Believe it or not, currently, the study of anatomy is legislated for under the Anatomy Act 1832. While this Act provides for the granting of a licence to an individual to practice anatomy, it does not include detailed provisions with regard to consent. The human tissue Bill will repeal this outdated Act and put in place arrangements with regard to the donation of bodies to anatomy schools and provisions for the setting of standards to be met in the practice of anatomy.

Part 5 of the Bill legislates for the public display of bodies after death and consists of 19 sections. There is currently no legislation governing the public display of bodies in Ireland. Consequently, the State has no powers to investigate the provenance of bodies on public display and to intervene, if required. The Bill will introduce a licensing system for the public display of bodies after death. There are a number of activities that will be exempt from the requirement of such a licence, however. These include the display of a body as part of a funeral or any similar ceremony held for the purposes of paying respects to a deceased person; the display of a body at a place of public religious worship and where such display is necessary to the act of religious worship; the display of a body in print, photographic or digital form, including on the Internet; or the display of a body for the purposes of recording, by film or otherwise. Further, a licence will not be required for the public display of the body of a person who died at least 100 years before the commencement of the legislation or for bodies already held in schools of anatomy, hospitals, universities, museums or galleries before the law comes into effect.

Part 6, the final Part of the Bill, is another general Part that covers miscellaneous issues. This Part provides for amendments and the repeal of existing legislation to support the functioning of the Bill.

There is much in this Bill. There are many technical issues around the public display of bodies and the practice of anatomy that need to be updated and legislated for. The two aspects to this Bill that are certainly the biggest priorities for me and, I would imagine, colleagues in the House are making sure post mortems are done in the right way and that there is - and must always be - consent from families, which is something that has not always happened and has involved practices that should not have happened in this country. This Bill will mandate under law that there must always be consent, which is right and proper. It is very important.

The second aspect is that we are essentially moving from an opt-in to an opt-out organ donation system. I have no doubt but that this will increase the donor pool. We know it has worked very effectively in Spain. We will need to wait to see what the impact is here but I anticipate there will be an increase in that donor pool. What that means for the 570 men, women and children on the waiting list today and their families, friends and communities is that the time many of them must wait will be shorter. They can get the organ donations sooner, which comes with enormous benefits in terms of their health and being able to get on get on with their lives. It is, therefore, important legislation. I thank all those who advocated in the Oireachtas and in civil society for this move. I am happy to stand in the Chamber this evening as Minister of Health to begin the passage of this Bill through the Oireachtas.

5:50 pm

Photo of David CullinaneDavid Cullinane (Waterford, Sinn Fein)
Link to this: Individually | In context

I have ten minutes and I am sharing time with some of my colleagues. I welcome this Bill. I am sure the Minister will agree it has been a long time coming. Sinn Féin will be supporting this Bill and we will work with the Minister to ensure it is enacted as quickly as possible.

I wish to first address Part 3 of the Bill relating to post mortems before returning to Part 2, which deals with transplantation and the new soft opt-out organ donation system. We have been waiting for too long for this legislation. A human tissue Bill was enacted in Britain in 2004. It has taken 20 years for the Government of this State to do the same. That has not been without its costs and consequences. Since then, we have had the Madden report in 2005, the retained organs audit by Ms Michaela Willis in 2007 and the Carter report in 2009. Each of these identified serious irregularities, from minor inconsistencies to very serious and egregious negligence with organ retention and disposal practices at hospitals across this State.

Most strikingly, the 2007 audit, confirmed by the 2009 review, identified serial malpractice by the so-called Consultant A at the Rotunda Hospital, who named himself in 2009. The inquiry into his malpractice identified many incomplete post-mortem reports, instances of retrospective completion of reports and the inappropriate retention of organs far beyond the permissible period. What happened next is what truly shocked me and many people. An audit published last summer by the HSE conducted on 10% of post-mortem files relating to post mortems between January 2018 and October 2021 found that multiple hospitals had improperly retained organs for more than one year despite all the previous reports. In particular, the report stated "significant delays were noted in relation to the sensitive disposal of organs" from post-mortem examinations performed by one consultant, a retired perinatal pathologist, on whom the HSE is "overly reliant".

This consultant practised at a number of sites on a locum basis and was recently named by "RTÉ Investigates" as the same Consultant A, who had been relieved of his clinical duties more than ten years ago. Due to delays waiting for approval from Consultant A, University Hospital Galway had retained the organs of 28 children for more than one year between 2018 and 2021. Other hospitals that retained organs of children while waiting approval for release from Consultant A include Portiuncula, Galway, St. Columcille's Hospital, Dublin, Midland Regional Hospital Tullamore and University Hospital Limerick. There are still serious questions that have yet to be answered by the HSE, particularly around the governance arrangements that were in place to prevent a repeat of the earlier experience. It seems that no effort was made to ensure that Consultant A was complying with HSE policy. If any formal governance arrangements even existed, they were clearly inadequate, which underscores even further need for this legislation to be robust.

Separate to Consultant A, University Hospital Limerick and Drogheda hospital continued to incinerate remains between 2018 and 2021.

Connolly Hospital also incinerated remains during this period. Children's Health Ireland at Crumlin held organs from 24 post mortems for more than 12 months during the period 2000 to 2021, with one sample dating back to 2000. At the same time, there was the tragic incineration in Belgium of the organs of deceased babies, which were disposed of in a panic by Cork University Maternity Hospital. These families have felt the pain of losing a child compounded by an inappropriate and insensitive disposal of some of their remains, which were retained for further examination and never buried.

This was followed by another report laying bare the tragic consequences of the failure to govern in law the retention and disposal of human remains. We are now told these tragic errors were made in the throes of the pandemic because the mortuary was wholly inadequate. The pathology team needed to clear space in the freezers in anticipation of Covid deaths. We also learned in this report that the graveyard for Cork hospital was at full capacity by the end of 2019. It is clear these mistakes took place because of underinvestment and unpreparedness. That is not a reflection on the staff in most instances, but on a system which failed time and again. All these failures were totally avoidable.

This Bill will put in place legal requirements around the retention and disposal of remains and I welcome that but it will not address the serious capacity deficits which led to these decisions. It will not address the dire shortages of pathologists or the HSE’s reliance on too few staff and it will not address the failures in clinical governance and oversight which the HSE failed to anticipate when consultant A began working for it again. These were failures of management and cannot be legislated away.

That is why I have a significant concern around part of this legislation. While the series of offences and provisions would seem to cover all of these instances, none of these issues are dealt with directly in the Bill. The Bill leaves the detail to regulations which have not yet been published. That is a concern for me. It is always a concern when significant and fundamental aspects of legislation are reduced to enabling powers under which the Minister must issue further regulations. However, when it comes to organ retention and post-mortem practices, I understand and appreciate that primary legislation may not be the best way to handle such matters. I hope we can tease all this out on Committee Stage and get a better sense from the Minister of what exactly those regulations will do.

An ask that has come from some of the families affected by the scandal in Cork is a prohibition on sending organs overseas for incineration. Will the Minister address in his closing statement whether he intends to do this and believes it is feasible. If not, why not?

While there remains some work to do in regulating organ retention, disposal and post-mortem practices, Part 2 of the Bill, which deals with transplantation and donation, is very welcome. This part introduces a new soft opt-out organ donation system. That means consent will be assumed, except where a person has registered an objection in their lifetime. Importantly, the Bill requires consultation with close family where a person has neither formally consented nor objected in their lifetime. It is welcome that families will have a say in ensuring a person's true wishes are carried out. Sinn Féin fully supports this system and I hope it will lead to a significant increase in organ donations in the years to come. The Bill also makes provision for altruistic donations during a person’s lifetime. This is particularly relevant for kidney donation, for example.

I have a concern that this approach will encumber the health service with a much more significant administrative burden than a hard opt-out system without family consultation. It is right to include the family but we must ensure we are resourcing the system sufficiently to increase the number of donations. The legislation places a heavy burden on the medical practitioner and our doctors are already stretched to their limits. To make this work, the Minister will need to put funding aside to build the system and ensure clinicians are supported to conduct the rigorous outreach and form-filling that will be required.

The Irish Kidney Association made this point in a submission to all Members. It said passing the legislation without adequate resources and infrastructure will not result in additional donations. We should listen to that body’s advice carefully. It has proposed several amendments to the Bill which would help to ensure transparency and accountability on this front. It proposes the annual publication of detailed data, along with a potential donor audit. This exists in practice in Britain. It asks that the report detail at hospital level the number of deaths; the number of potential donors; the number of donors requested to donate; the number assured for medical suitability for a donation; the trend of responses from families and next of kin to donation requests; the number of organ retrievals, including information on cases where retrieval is not feasible; and the number of transplants, to include detail on where and why transplantation is not feasible. That association has also requested that the legislation be amended to introduce a required request policy, under which hospitals would be required to record evidence showing all families of potential organ donors have been approached to give consent under the legislation for their loved ones’ organs and tissues to be used for transplant.

The Irish Donor Network underlines the concerns about capacity and infrastructure. In its submission, it states that additional resources are needed for organ donation, transplantation and post-transplantation care, such as additional beds for pre- and post-operation care, more post-transplant specialised doctors and multidisciplinary teams and additional investment in organ assessment and retrieval practices. The network also highlights the need to optimise the use of theatre time to maximise the number of surgeries.

There is a bit more I wanted to say but I will leave it at that. We will have an opportunity to tease out the legitimate and constructive proposals those associations have made but I commend the Minister on bringing forward the Bill.

6:00 pm

Photo of Seán CroweSeán Crowe (Dublin South West, Sinn Fein)
Link to this: Individually | In context

I have long been a firm believer in the need to reform and streamline the organ donation system. In particular the difficult and sensitive issue of consent from bereaved families needs to be addressed. Hopefully this legislation will go some way towards doing that.

It is a terrible time for a family which is still reeling from the loss of a loved one. To be asked to donate as you watch a loved one die in front of you is a difficult time. It can never be easy, not only for the family involved, but also for the staff asking that awful question. At least with this Bill, the intention of the deceased to donate or not will have been made clear to families and hopefully they will know more about their options. As with all matters in our health service, infrastructure will be key in deciding whether our reforms are worthwhile.

Ireland ranks well below the average for organ donation with some 700 people waiting on donations at the moment. In 2021, 31 people on the list died without receiving that all-important phone call that an organ had been found. Do we have the capacity to honour those who wish to donate organs by accepting them in our hospitals and getting them to where they need to be? That is the big question. Organ donation is an extremely time-sensitive matter. If an organ is donated in Sligo, could it be accepted, transported to Dublin or Cork, a recipient found and surgery performed in the time available? Time and infrastructure is key.

The scarcity of ICU beds was laid bare during Covid and without significant investment we risk failing to capitalise on the potential increase in organ donations this legislation could bring. The Bill is a step in the right direction but we cannot leave ourselves unable to facilitate organ donation and transplant because the theatre space is not there. Towards Excellence in Critical Care, submitted to the HSE in 2009, mandated the number of critical care beds should be increased from the then figure of 289 to 579 by 2020 to kept up with population growth. In 2021, we had 276 operational full-time ICU beds. We managed to lose 13 beds in the 12 years, despite huge population growth. Will the Minister confirm that critical care infrastructure will be radically expanded to provide for post-operative care? Without it, I fear we will not see the good of any of the changes we are discussing.

I have a number of questions about the practical application of changes to the donation system. Will the opt-out system be a blanket refusal only or will individuals be allowed to opt out of donating specific organs? There are sensitivities, with some people reluctant to donate eyes or something.

Maybe the Minister could clarify that in his response. Some people might have particular reasons for not donating certain organs, but they may want to donate others. Will that be provided for, or will it be a case that you opt out and that is it? Again, this is a matter of clarity. Will the Minister publish any of the reports on the investigations into the non-use of organ donation in the Mater hospital in November 2021 and what the learnings or actions have resulted to avoid a repeat in the future?

I cannot imagine the distress of being told a donation has been arranged for you, only to be told that the lack of a bed means that you cannot accept it. It is inhuman to put someone through that whiplash of emotions and every effort must be made to ensure that it never happens again. While I welcome the efforts to reform the system of organ donation, my big concern is the ability of our health service to accommodate it. We saw the havoc in our public hospitals during the winter months and how a predictable wave of respiratory infections brought the entire system to a standstill.

Organ transplants are not like an elective surgery where you can bump someone off a list and tell them to come back in two months. It is a matter of priority. If we are to make these changes and introduce the soft opt-out system, then we need to make the necessary investments to ensure that those who stand to benefit see the benefit.

Lastly, I want to use this opportunity to thank those who are involved in blood banks. It is a voluntary service. They move organs. They move blood. They do an essential service within our health service. They do it all on a voluntary basis. I want to congratulate them on the work they do.

6:10 pm

Photo of Pauline TullyPauline Tully (Cavan-Monaghan, Sinn Fein)
Link to this: Individually | In context

I broadly welcome the Bill, although there is a small number of issues that need to be addressed. I commend the Minister on bringing this forward. In terms of organ donation and transplantation, Ireland, according to the Global Observatory on Donation and Transplantation, GODT, currently ranks 28th in organ donation rates out of 72 countries worldwide. Rates of organ donation are 18 per million population in Ireland compared with 25 per million population in Britain.

I welcome this Bill will introduce an opt-out model like that in Britain, replacing the opt-in model that currently exists. A recent study published in the journal Anaesthesia in May 2020 compared deceased organ donor rates in Wales, which introduced an opt-out system in 2015, with England, which only introduced it in 2020. In the three years between 2015 and 2018, the rate of consent in Wales was double that which was seen in England and donor numbers rose rapidly. One organ donor can potentially save seven lives. There are also benefits to recipient families and Irish society in general, including the Irish health system and the wider economy in promoting transplantation and working towards the most effective organ donor system possible.

In 2021, there were 669 people here who were reported to be on the overall transplant waiting list and there were 31 deaths reported of those waiting for a transplant. An opt-out system, I believe, will give more opportunities to those who are in need of organ donation and will reduce the number of people dying while waiting for a transplant. The Bill, with choice and consent at its core, respects individual human rights, personal autonomy and religious beliefs. It retains the right of anybody who believes that it interferes with any of these to be able to opt out and this is important. It also requires consultation with the person's family and that, too, is important.

While I support the Bill, I have concerns about the administrative burden if it is not properly resourced. There is a need for significant investment in essential infrastructure, transplant surgeons, trained support staff and enhanced bereavement supports to substantially increase transplantation rates. Enhanced public awareness and education are also essential.

Another aspect of this Bill strives to address concerns raised in the report by Dr. Deirdre Madden on post-mortem practice and procedures. The Madden report came about on the back of a number of serious revelations about the retention of organs at a number of hospitals and that a number of children's organs which had been retained without their parents' consent or knowledge were also sent abroad for incineration. Again, this was without their consent or knowledge.

One of my constituents was in contact with me recently. Her son, Tadhg, was stillborn in June 2016 at almost 38 weeks gestation. A year and five months after burying Tadhg, she was contacted by the morgue in Drogheda asking her if she wanted her baby's brain and left lung. She had no idea that her son's organs had been retained and she did not get the organs back until March 2022, which was five years and nine months after his funeral. The family reopened his grave to bury the rest of their son. Can you imagine how difficult it is to lose a baby in the first place? Then, the hurt was revisited on them all over again when they were confronted with the fact that part of their baby son was removed and retained.

I acknowledge that it is common practice to remove organs during a post mortem and to retain these organs for further tests, but surely families should be informed if this is the case. This family still does not know why their baby son's organs were retained. The sad part is that they are not the only family that this happened to, and this was not mentioned in the post mortem report. It seems that one pathologist in particular was responsible for quite a number of these post mortems. The families concerned deserve answers from him or from the health service. This Bill must ensure that something like that cannot happen again.

Another issue that was brought to my attention was that of families that have been negatively impacted by the delay in the carrying out of post mortems. Many hospitals, particularly in Dublin, do not carry out post mortems. Some only carry out a post mortem if the person passes away in the care of the hospital. This means that there is enormous pressure on the mortuary in Dublin city. One family from Cavan whose family member passed away suddenly in Dublin on a Wednesday evening had to wait until the following Tuesday for the post mortem to take place and then have his body released to them for burial. That was extremely difficult on them. This is another example of the lack of workforce planning which is evident across many sectors of society and particularly in relation to medical personnel. The staff in the mortuary in Dublin city were trying their best but they were inundated with work and were trying to cope with deaths which occurred in several hospitals as well as in the community.

Once again, I broadly welcome this Bill with the caveat that a number of issues still need to be resolved. I commend the Minister on his work, and I especially praise the families who have been so horrifically impacted and who have battled to have safeguards put in place so that no other families will have to go through what they went through.

Photo of Duncan SmithDuncan Smith (Dublin Fingal, Labour)
Link to this: Individually | In context

We welcome this Bill and will be supporting it. We had been assured that this Bill would come before the Dáil several times last year and it was a cause of great distress for many that it had been delayed for so long. Yet, it is here before us now and there is no doubt that it is a highly technical and sensitive Bill that required a lot of time.

The Bill does a number of important things. It puts into practice the recommendations that had been made in the Madden report concerning post-mortem practices and procedures. This is a positive step in ensuring our bodily autonomy and integrity in death and in providing families with some peace of mind with the tragic passing of loved ones. It is fair to say that we were all devastated by reports from last year that found that the organs of 20 deceased babies were sent abroad for incineration without the knowledge or consent of their bereaved parents. Losing a child is every parent’s worst nightmare, but then to have had this additional pain inflicted upon them is unconscionable. While it will be of little comfort to the parents of those babies, this legislation will at least ensure that such appalling incidents will never happen again.

The Bill allows us to increase our pool of candidates to provide potentially life-saving organ donations and transplants. It provides families with some sense of peace of mind on the tragic passing of their loved ones. Crucially, it does this without impinging on our ability to choose what happens to our bodies when we pass and our ability to consent to it, which should be of the utmost importance in matters as sensitive as those that are addressed in the Bill.

We know that an opt-out system of organ donation will save lives if it is properly resourced. At the same time, the Bill also respects the wishes of those who are not comfortable with donating their organs for various reasons, for example, cultural, religious or the wishes of the deceased’s family members.

I am glad to see the Bill provides for the establishment of a centralised opt-out register. It is unfeasible to expect every person’s next of kin to know their consent status. I am an organ donor, but I just checked my wallet and my card is not there. I do now know where my card is, and I am not necessarily sure if my own next of kin are aware of my wishes. It is a lesson to us all that we need to be clear where we can be about our wishes in this regard. However, it is unfeasible to expect everyone to know their consent status. While it is right, as outlined in the Bill, that the final say in donation should lay with the next of kin, regardless of whether or not an individual has opted in or out, the national register will at least remove some of the burden on those closest to the deceased having to make that decision, should they find themselves in that tragic circumstance.

It is vitally important that this register is well maintained. We cannot overstate this enough. This will be a live list and one that needs to constantly be maintained and well-resourced. Turnaround times for organ donation and transplants are often extremely short, so it is crucial that information regarding potential donors and their consent status can be accessed in the most practical and time efficient manner possible.

I urge the Government and the HSE to put measures in place to ensure the register will be well maintained, accurate and effectively bulletproof in terms of the efficiency of its administration. This matter is extremely sensitive and personal and, therefore, information security and confidentiality must be held in the highest regard.

I am glad to see that, as per recently released HSE figures, our organ donation rate is recovering following disruptions caused by Covid in 2020 and 2021. Last year, 250 organ transplants took place from 119 donors. That is still 24 shy of the 274 transplants carried out in 2019, pre-Covid, but it is encouraging to see that figure bounce back from where we saw a 32% reduction. That is 250 people who otherwise would probably not be here with us today, or who would at least be living in continued poor and diminishing health - mothers, fathers, brothers, sisters, friends. It is 250 people who have been given a second chance at life thanks to the parting gift of deceased donors and the altruism and selflessness of living donors.

We can do better, however. Ireland has a comparatively low rate of donation among our European neighbours. Our rate of donation is 18 per million people, whereas in Britain, for example, the equivalent figure is 25. While implementing an opt-out model of donation is a welcome and progressive move, it will also, I hope, help to improve our rate of donation. This legislation is not a catch-all solution to increasing the number of available donors in Ireland. As I said earlier, it has the potential to save lives if properly resourced, and I emphasise those three words "if properly resourced". The Spanish model is often cited as showing the considerable potential of implementing an opt-out system. Spain consistently has some of the highest donation rates in the world per head of population. When it initially moved to an opt-out model, however, the increase in donation levels was marginal, and it was not until it had introduced a network of specialised transport co-ordination teams that significant improvement could be seen. This means the real difference will be made in the organisation model that follows the Bill.

I see no provisions in the Bill concerning increased funding for transplant co-ordinators in Ireland, and I urge the Government to consider this aspect seriously in order for the legislation to be as effective as possible. Transplant co-ordinators cannot be confined to a small number of hospitals, as they are at present. Organ donation nurse managers are attached to each hospital group but not to each hospital. We need to go beyond that. Dr. Alan Gaffney, clinical lead for organ donation in the RCSI Hospitals Group, has said having specialist personnel in every ICU department in the country is crucial to increasing levels of organ donation. The Irish Medical Organisation, IMO, has also called for an increase in the number of transplant co-ordinators who would, independently of the transplant team, serve to liaise with the potential donor and his or her family to talk through the process and provide any necessary assistance.

I urge the Government also to engage in a sustained public awareness campaign. The legislation deals with a difficult but important matter and people can, understandably, be uncomfortable talking about it. We have an opportunity both to inform people of the facts and processes relating to organ donation and to prompt families to have a conversation about whether they will be comfortable donating their organs when they pass. It would also provide an opportunity to assure people that their consent or that of their family will be of the utmost importance. We do not want family members to object to a loved one's organs being donated because they are unsure as to what that person would have wanted. Research has shown public awareness played a significant role in increasing donation in Wales when that country implemented the opt-out model in 2015, and now is the time for us to encourage people to have that conversation.

In the discussions and preparations relating to the Bill, we have focused on those who might have issues with organ donation and how uncomfortable they may be with it, but we need also to shine a light on those families who have got great comfort, solace and hope when the tragedy of the passing of their loved one has been followed by the donation of that loved one's organs. I have personal experience of great comfort being given to families when that has occurred. In the darkest of times, the gift of extending life for other people through organ donation can give families greater comfort than, perhaps, religion, solace or anything else. They know that their loved one is, in some fashion, living on and providing hope to another family. That is a positive, hopeful message we need to get out there, and it is something the Bill will have the capacity to do once implemented and, as I said, properly resourced.

6:20 pm

Photo of Jennifer Murnane O'ConnorJennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
Link to this: Individually | In context

It is important that we support and develop organ donation and transplantation in Ireland, and this soft, opt-out system of consent is how we will do that. Nevertheless, we must communicate that message effectively. The Bill will bring in a system whereby a willingness for organ donation will be assumed unless, while alive, the person registered his or her wish not to become an organ donor after death. It will also introduce frameworks for living donation, including for non-directed, altruistic donation.

Sadly, tragedy happens, and many people who may have wished to donate organs after death might not have had time to discuss the issue with their families. Often, their desires are not acted on because that conversation was never had. Nobody likes talking about death, but this is one way that those who would like to donate will get that chance automatically unless they have expressed that they do not wish to do so. I welcome the fact the Bill addresses the concern raised in the Madden report on the post mortem practice and procedures for 2005 by introducing a statutory requirement for consent for non-coronial post mortems and providing for the regulation of post mortems in hospital settings. Too often, families have suffered because there has been no consent sought or no regulation of a post mortem. What kind of public awareness campaign is planned for this issue?

Another issue relates to the amendment of section 57 of the Coroners Act to introduce a far more formal process for the final interaction between a coroner, the family and a nominated person in a hospital or other facility. My concern relates to the lack of coroners in Ireland. Carlow currently has a deputy and a coroner shared with Portlaoise, and there can be delays for families. Money and resources are going to be so important in this regard. I understand the part-time nature of the coroner system often means families are made to wait longer for a decision than would be satisfactory. What steps are being taken to address the lack of resources in the coronial system?

Are new positions being created in hospitals to facilitate guiding families through the process, or will it be left to the doctor who declared the death? Will hospitals be resourced with social workers or guidance professionals for families? I would be deeply concerned if new steps were put in place and already-hard-pressed staff were expected to add that task to their very busy working day. A coroner must now ensure family members will be made aware as soon as is practicable, and that any material retained following a post mortem examination is no longer required. Are procedures being put in place for the reunification of that material, should the families so desire, with the loved one?

I am also concerned that where no authorisation has been received or where efforts to make contact have been unsuccessful, a coroner is authorised to direct the disposal of material. Such material may include material consideration of an historical nature, which may have been stored for a long period and whose retention serves no further purpose. It still relates to someone, however. What measures are being put in place to ensure this disposal will be carried out with dignity and respect?

I recently received a phone call from a constituent who is very much in favour of the Bill. While she said it was appropriate that we get it passed as soon as possible, she asked me to ask the Minister why, when the Bill concerns death, it contains no definition of a "death”. Would that change depending on the setting where the death is said to have occurred? Would it be open to medical opinion? The death of a prospective donor should be clearly established before vital organs are removed for transplantation.

Not to reiterate what other Deputies said, I very much welcome the Bill. It has the potential to affect many families. As one Deputy said earlier, it is about the gift of life. I know of one family who have gone through this process and it has been exceptional for the person who received the transplant. The Bill is very positive, although some questions will need to be answered and the proposal will need funding. Will the Minister revert to me with responses to my questions at his convenience?

Photo of Patricia RyanPatricia Ryan (Kildare South, Sinn Fein)
Link to this: Individually | In context

I commend the work of the Irish donor network, the Irish Kidney Association and all other groups that do fantastic work in highlighting issues relating to organ donation. The Bill will, I hope, help normalise organ donation in Ireland. I am mindful that in most cases, in order for someone to benefit from an organ donation, another person must have lost a loved one.

I know many families who have suffered the loss of a loved one and have taken some comfort from the fact that their loved one has brought solace to another family. In either saving or greatly enhancing someone's life, one organ donor can save up to seven lives. It is an incredibly generous thing to do. It is vital this legislation is backed up by adequate resources and infrastructure. Otherwise it will not result in additional donations. Apart from the human benefit, there is an estimated €612 million in savings from a modest increase in organ donation. This money must be used wisely.

We must see a public campaign to ensure the benefits of this Bill are known. The transplant service in Ireland is fragile at the moment. We saw this in November 2021, when a planned transplant did not go ahead at the Mater hospital due to unavailability of an ICU bed. The investigation and recommendations relating to this incident have not yet been published. They must be published as soon as possible so we can learn from the experience and prevent it from happening again.

Many issues are not clear from the draft Bill and I would appreciate clarity from the Minister. We know this Bill provides an automatic opt-in. Will the Minister clarify why families will not be approached if their loved one has opted out? In other countries, families are still approached to ensure their loved one's view had not changed since opting out. Clarity is also needed on whether the Bill legally permits retrieval and transplantation of other organs not specified in the Bill which can currently be transplanted, for example, the cornea, small bowel and uterus, or organs that may become transplantable in the future.

I wish one of my constituents, who we have been assisting in relation to a social welfare issue, the best of luck. He had an assessment today for a double lung transplant and will be very interested in the swift passage of this Bill. We must not lose sight of the human cost of further delays to this legislation. My hope is that we can get this legislation right so it will help people and their families through a difficult time.

6:30 pm

Photo of Róisín ShortallRóisín Shortall (Dublin North West, Social Democrats)
Link to this: Individually | In context

I welcome what can only be described as long overdue legislation, which we in the Social Democrats are happy to support. This is an area very much in need of reform and tighter regulation. It is by no means a new issue. The first of four rounds of public consultation took place as far back as 2007. The first iteration of this Bill was published in 2009. It is frankly unacceptable that it has taken well over a decade for this legislation to reach the House. What was the hold-up? It is hard to understand when there is so much public support and support from both sides of this House. Advocates and stakeholders are certainly on board. The Opposition is eager to support the Minister in progressing this Bill. Pre-legislative scrutiny was waived two years ago. I fully accept this is a sensitive subject which requires delicate handling. Other countries are way ahead of us. In fact, 21 EU member states already operate an opt-out consent system and 30 have a registry of organ donors. While it is difficult to draw comparisons between member states and their organ donation systems due to the differences in legal and regulatory regimes, one can draw conclusions from the total number of transplantations. In that regard, Ireland is a laggard. In 2021, the number of transplantation patients in Ireland per million of the population was 40.6. This was significantly behind jurisdictions with more developed transplant systems such as Spain, at 99.7, France, at approximately 78, and the Czech Republic, at approximately 73. While some states fared worse than Ireland, many of them have a much lower economic per capitaincome than Ireland. The low level of transplant occurring in Ireland is only one reason this legislation should have progressed sooner.

Successive governments' inability to get this over the line created conditions for further scandals to take place. In the absence of clear legislation, many bereaved families have been failed by the State. Most recently, there was a scandal in Cork University Maternity Hospital, where the remains of 18 babies were sent to Belgium for incineration without the knowledge or consent of the bereaved parents. I do not think any of us can imagine what that is like if we have not had that awful experience. Imagine that trauma and grief being compounded by hearing this news about what happened to the remains of those babies. Imagine having to go public with your story to ensure no other parent must go through the same thing. Imagine having to carry the burden of ensuring this legislation does not slip off the political agenda yet again.

This was not the first scandal. Ireland has a long and, unfortunately, sordid history in this regard. It has been more than 20 years since the Dunne inquiry was established following the scandal in post mortem examinations and organ removal and retention at Crumlin children's hospital. It has been 18 years since the Madden inquiry into the policies and practices relating to the removal, retention and disposal of organs from deceased children. I ask the Minister again why it has taken this long. Why is this not already on the Statute Book? Everyone agrees that parents and guardians must be at the centre of decision-making and control in respect of their children's remains. The Madden report was clear on the root causes of previous scandals. There had been a lack of communication with parents as to why organs were retained in the first place, differing perspectives as to the significance of remains, and a legislative vacuum on the role of consent in post mortem practices. Those concerns are just as pertinent today as they were in 2005. For 18 years, we have known that the solution is clear and unambiguous legislation. We need laws that ensure any decision in relation to a child's remains is taken with the full knowledge and authorisation of the parents. I am pleased to see we have nearly reached that point and we are finally close to implementing the key recommendations of the 2005 report. However, it should be a deep source of regret and shame for the State that further scandals were allowed to occur while successive governments dithered over this Bill.

I will now focus on another important provision of this Bill, which is the introduction of a soft opt-out system of consent for organ donation. This change to the system aims to make organ donation the norm in situations where it is possible. Under the current system, you can express your desire to donate your organs by carrying an organ donor card or through your driver's licence, for example. However, while research undertaken in Ireland shows that 80% of the population supports organ donation, only around a third carry an organ donor card. Therefore, this shift to an opt-out system instead of an opt-in one is welcome. Although this change to presumed consent alone will not solve the issue of organ shortage, it sends out an important message. While the wishes of families will still absolutely be respected under this new system, the default expectation will have changed, which is an important point.

If we want to increase the number of organ donations in Ireland, the changes proposed in this Bill need to be supported by other resources, including increased ICU beds and staff. The awful example raised by another Deputy earlier of a lack of an ICU bed is a case in point. As things stand, the Irish health service operates with one third of the equivalent international infrastructure for organ donation and transplants. The inadequacy of this service receives little attention. There are several reasons, with the relatively low number of potential transplantations each year a driving factor.

Only approximately 1% of people die in circumstances where organ donation is possible and less than 10% of those who die in ICUs are potential organ donors. Between 2017 and 2021, there were only 393 donations from deceased persons and, on average, only 80 donations occur each year. However, despite these relatively small numbers, the Irish system still struggles, because for every donor identified, an ICU bed is occupied, a resource which is in very short supply. The length of time a donor spends in ICU can also be an issue due to the shortage of consultants and surgical theatre space.

On staff, specialist organ donation personnel are needed in every ICU department along with further ICU nurses and other ancillary staff. Of particular importance is the need for trained staff who can approach and support families of potential donors. Given the tragic circumstances surrounding most potential organ donations and the need for increased instances of donations, the significance of this work cannot be overstated.

These are just some of the infrastructure issues which must be addressed in parallel with this new consent system. We know there is significant unmet need in this area but we need to resource the service in order that it is enabled to meet this need. This is especially pertinent in respect of altruistic donations where a sudden uptick in donations could overwhelm the system.

Another important but often overlooked measure is need for a robust national public awareness campaign to support the introduction of the soft option system of consent. This will be vital to secure public buy-in and ensure these changes are not misinterpreted. It must be clearly and widely communicated that the wishes of families will still be respected under this new regime. Every effort must be made to ensure the public is not misled in any way in this regard.

Another area which must be addressed is the absence of collated organ donation data. Many countries publish annual potential donor audits and Ireland should follow suit in this regard. These vital data could be managed and published by Organ Donation and Transplant Ireland on an anonymised basis.

Separately, I am pleased to see this Bill will finally deal with anatomical examinations and the public display of bodies. The latter is sorely needed as there is currently no legislation governing these displays, meaning the State has no powers to investigate the origin of these bodies or the consent arrangements which apply in respect of some of these exhibitions we have seen staged here in this country over recent years.

On anatomical examination, this, unfortunately, is another area where the State does not have a very proud past. In 2014, we learned that almost 500 unclaimed infant remains were transferred to the medical schools at four universities from 1940 until 1965. Although this practice ended in the mid-1960s, we are told it was done in accordance with the Anatomy Act of 1832, an Act which will only be repealed by the passage of this Bill. Clearly, there is dire need for modern and robust legislation around the donation of bodies to medical schools, with consent as the defining principle.

I wish to acknowledge the deceased donors and their families who, in such tragic circumstances, have given the gift of life to, very often, complete strangers. It truly is an outstanding act of kindness and, as a State, we must do everything in our power to resource and support this remarkable service.

As the leaders of Spain’s organ donation service said in a 2019 paper in which they stated that low transplant numbers are because of governments:

...ignoring that the key to success lies within the healthcare system. We should never blame the population. If people donate less, it must be something we have done wrong.

This is an insight from the leader of one of the world’s most successful organ donation service. The Minister would do well to remember that.

I also repeat that I am very pleased, on behalf of my party, to support this legislation which addresses a number of very significant and outstanding issues. I am very pleased they are finally being dealt with.

6:40 pm

Photo of Cormac DevlinCormac Devlin (Dún Laoghaire, Fianna Fail)
Link to this: Individually | In context

I welcome the opportunity to examine and discuss the Human Tissue (Transplantation, post mortem, Anatomical Examination and Public Display) Bill this evening. This landmark legislation includes provisions around organ donation and transplantation, post mortem practice and procedures in hospital settings, anatomical examinations, and public display of bodies after death.

The Bill will support organ donation and transplantation in Ireland and aims to make organ donation the norm in situations where the opportunity arises, thereby helping to increase the pool of organ donation here in Ireland. The proposed Bill will ensure the principles of protection of the bodily integrity of the individual before and after death. It enshrines respect for the dignity and autonomy of the individual, and the rights of the bereaved are enshrined in legislation. It will make consent for non-coronial post mortems compulsory and it will improve communication and information-sharing with families for all post mortems, including those conducted under the direction of the coroner.

I welcome the proposed regulations around transplants. I thank the Minister and the Government for bringing this forward. This issue has been long discussed, not only in this House but in the other Chamber, the Upper House of the Oireachtas. I want, in particular, to put on the record my appreciation of Senator Mark Daly, who has been proposing such legislation for nearly a decade now. He, too, would also warmly welcome the progress of this Bill through the House. It is important to note that families will still be consulted ahead of donation and those individuals who object, for whatever reason, will be able to opt out, something the Minister highlighted very well in his opening remarks. The principle of consent is at the centre of this Bill. Transplantation is currently the only available treatment for end-stage heart, lung and liver failure. It is also the most cost-effective treatment for end-stage kidney disease, and it brings enormous clinical and social benefits to patients who would otherwise remain on dialysis. Last year, about 250 people had life-saving transplants. It is hoped the provisions of this Bill will help save more lives by providing for the first time a national legislative framework to support donation and transplant services in Ireland, helping to increase that donor pool. The legalisation introduces an opt-out approach. This will allow anyone to opt out of the scheme. It is important to note that families can also opt out if they would prefer their loved one’s organs are not donated for any reason.

The Bill will also introduces a new regulatory regime to ensure best practice is followed in respect of post mortem and organ retention. We have seen a number of scandals in this area, again highlighted by the Minister, with tissue being retained for years without the knowledge or consent of families. This was particularly distressing where the tissue and organs of babies were retained without the consent of mothers and fathers. This Bill will introduce regulations in this area, which are very welcome.

The Bill also repeals the Anatomy Act 1832 and puts in place arrangements for the donation of bodies to anatomy schools together with provisions for the setting of standards to be met in the practice of anatomy. The new legislation also deals with the public display of deceased individuals, something which is not legislated for here in Ireland. It will require a licence for public exhibition. This will not impact funeral arrangements or religious ceremonies when someone is in repose, but is aimed at events such as the Real Bodies exhibition, which displays human remains to the public.

I thank not only the Minister for bringing forward this legislation in a timely fashion in this current term of the Dáil but also the officials and many campaign groups which have been in contact with all Deputies across this House over many years, pressing to bring this very important and very welcome legislation forward.

Photo of Thomas GouldThomas Gould (Cork North Central, Sinn Fein)
Link to this: Individually | In context

This Bill is long overdue.

The consequences of the delay have been significant for many families. I commend the proposed soft opt-out for organ donation. It is positive and could be hugely beneficial, provided we see enough resourcing. Often good policies fail because of poor implementation or support. I do not want to see that happen here because this Bill can make a significant difference.

I want to talk mainly to the incineration scandal in CUMH. In 2020, the organs of 18 deceased babies were sent to Belgium for incineration without the knowledge of their parents. Some of these parents believed their babies' organs had been buried in the CUMH graveyard for children's organs. This scandal was exposed by RTÉ in September 2021. Parents found out a short few months earlier what had happened. A report was promised and, most important, parents were promised a voice. They were given a commitment that they would be able to have an input into the draft stage of the report and that the input would be included in the report.

On 19 November, the report was published. Parents saw it for the first time that day. It has been 66 days since the report was published. I spoke to a parent this morning who is still waiting to hear from the HSE to discuss the findings. She has issues with the report and wants to be listened to. She wants to engage with the HSE constructively because she, like other parents, feels she has not been listened to or included. There is a significant issue with communication and listening to the families involved.

The Bill needs to be strong enough to stop a repeat of this tragic incident so that it will never happen again. It would appear the HSE and Government do not understand how serious the situation is for the families affected. These parents are looking for closure. They have been through an unimaginable tragedy which has been compounded by the State's incompetence. I ask the Minister to give a commitment that the HSE will meet the families before the end of January to discuss the report and finally show them the respect they and their babies deserve.

6:50 pm

Photo of Paul MurphyPaul Murphy (Dublin South West, RISE)
Link to this: Individually | In context

We welcome the Bill and its key provisions. The provisions to support and increase organ donation and transplant through a soft opt-out system of consent are welcome and should ensure many more organs become available for transplant. That is obviously very good news for the more than 500 people in Ireland who are on waiting lists for organ donation.

In 2021, there were 203 organ donations from 99 donors. About 250 organ transplants took place in 2022 from 190 donors. The 2022 figure includes kidney transplants from 33 living donors. The chief executive of Cystic Fibrosis Ireland, CFI, has said, "Transplant and donor rates in Ireland have the significant potential to be improved by this legislation if accompanied by the necessary resources and public awareness supports," It is vital we ensure that resources, public awareness campaigns and so on follow on from the Bill.

The truth is the Bill is long overdue. We are the last country in Europe to introduce a soft opt-out. A soft opt-out system of consent for organ donation was introduced in Wales 2015. Within four years, the rate of people donating increased from 50% to 77%. England introduced an opt-out system in 2020 and Scotland in 2021, and we hope that one will soon be in place in the North.

The Council of Europe transplant report of 2021 showed Ireland with a transplants per million population rate of 40.6, well below the rates achieved in countries like Spain, which is very close to 100, the UK, which is very close to 60, or Croatia, with a similar sized population, at 65.4 transplants per million population. It is the international norm to have legislation governing donation, organ donation and transplantation, and the Bill introduces Ireland's first legislative framework in this area. At last, Ireland will be brought into line with good international practice in regard to the governance practices relating to human tissue. It is clear the Bill is long overdue.

A key issue for organ transplants will be specialist transplant capacity. The Irish Kidney Association, IKA, recently commented that the increase in donors and transplants in 2022 is welcome but said the underpinning infrastructure is still fragile and referred to the November 2020 incident where organs donated were not used due to a lack of resources. It went on to say it awaited the recommendations of the investigation into this incident.

In November 2021, an organ transplant operation at the Mater hospital was cancelled because of a shortage of ICU beds. The organs became available and were delivered to the Mater hospital by ambulance. The transplant patient was put on standby and the procedure was due to go ahead later that day. However, the hospital's ICU beds were full, and despite a frantic check of other hospitals in Dublin, no ICU beds were available and the operation had to be cancelled. The IKA has also said recently that it is disappointing to see that levels of heart and lung transplants have not recovered to pre-Covid-19 activity levels and it will be interesting to understand the reasons for this.

The IKA has also called for more transparency around transplant waiting lists. It said we need more clarity about the reasons more transplant operations are not taking place in Ireland. In the UK, a detailed report is available on each step of the process that results in organ donation and transplantation. No such data are published in Ireland. The IKA, correctly, wants more transparency on the criteria for patients to be accepted or removed from transplant waiting list for heart, lung, liver, kidney and pancreas transplants. For example, in excess of 2,000 patients with end-stage kidney disease receive dialysis treatment in Ireland. However, 20% of these patients are on the transplant waiting list. We need more transparency in all of these issues.

Our ICU bed capacity is far below what we need and far below the EU average of ICU beds per capita. We need to almost double the number of beds in the public health system. There are currently about 300 ICU beds available in our hospitals. This needs to increase to about 600 beds to ensure we have the capacity that is needed. This Government, along with previous Governments, has failed to act on this deep lack of ICU bed capacity. The likely increase in organs available for transplant makes this even more urgent. We have a chronically underfunded public health service, whether that is accident and emergency departments, child and adolescent mental health services, CAMHS, or bed capacity. A lack of capacity and staff undermines the health service, leaves more than one in five of the population on some form of health waiting lists, and creates entirely avoidable risks to the health of so many for want of timely care.

I raise the case of Dáithí Mac Gabhann, a five-year-old boy from west Belfast who was born with hypoplastic left heart syndrome and has been waiting for a heart transplant for most of his life. He has also inspired a truly remarkable campaign. His parents, Máirtín and Seph, have done Trojan work on opt-out organ donation. They have raised awareness, broken down concerns and galvanised an entire community. The Donate for Dáithí campaign was so successful it succeeded in achieving that most unique of things, namely, cross-party support in Stormont for opt-out legislation. The law has been named Dáithí's law. Stormont has passed the legislation, but full implementation is being held up because there is no functioning Executive. The family has fought enough. They have banged on the door of the Secretary of State to demand he intervenes. They have secured a meeting with him for 1 February. The demand from the campaign is clear. The demand from Máirtín and Seph is clear. The demand from Dáithí Óg is clear, namely, that the Secretary of State step in and enact the necessary legislation to ensure Dáithí's law becomes a reality. I ask our Minister to intervene and write to the Secretary of State before 1 February to press Chris Heaton-Harris to hear Dáithí's call.

Photo of Mick BarryMick Barry (Cork North Central, Solidarity)
Link to this: Individually | In context

I have one or two specific questions regarding the Bill. In early 2020, babies' organs stored at CUMH were sent to Denmark for incineration.

This was done without any consultation whatsoever with parents of those babies. The truth came out in the wash, not from above so to speak, but through various pressures from below. This was a real scandal. It was highlighted in an "RTÉ Investigates" documentary and a review was put in place on foot of that programme. The parents were forced to wait and wait again, for two and a half years, for the report of that review to be published. In the end, it did include an apology but no apology can ever make good the wrong that was done to those parents.

In fairness to them, all through the tragedy and the terrible experiences that they went through, they advanced a clear demand. Their demand was that legislation should be put in place to ensure that this would never and could never happen again, that no other parents would be forced to go through the ordeal they had been forced to go through. It seems to me that the legislation does include an important provision on this issue. The relevant section is in Part 1 of the Bill, at section 8(6) which reads as follows:

A person who is in lawful possession of an anatomical specimen under Part 5 or organs or tissues of a deceased person shall be responsible for the disposal or return of the anatomical specimen, or organs or tissues or their return to the designated family member, subject to the wishes of the designated family member.

That seems to point towards an important change and the campaigning work of the parents would seem to have borne fruit in that section. However, before saying clearly that this is a victory - if one can talk about a victory after what happened to those parents - for the campaigning work that the parents have done, I want to hear confirmation from the Minister. I will not be here for all of the debate but I will be reading the transcript very carefully later. I want the Minister to confirm that section 8(6) in Part 1, that I have just read into the record of the House, means that what happened at Cork University Hospital, CUH, and the ordeal that those parents went through, cannot in law happen again. I would like the Minister to confirm that clearly in his reply. I would also like him to indicate whether that section of the legislation means that if what happened at CUH was to happen after this legislation is passed, it would not just be a breach of guidelines but a breach of the law and that criminal consequences would flow from that. Alternatively, is that something that is not quite clear from the legislation and which needs to be clarified by way of regulations? I would like the Minister to state the position in relation to that.

I note that the Bill provides for the Minister to make regulations on certain matters and this can involve consultation with medical practitioners, parents and others around the detail of how the new legislation will be implemented. This is a provision that needs to be looked at very closely. I understand and appreciate that this Bill deals with issues far broader than the issues to which I refer arising from events at CUH and while I am focusing on the question of the disposal of organs here, in all aspects of this Bill parents are a key part of that consultation process.

The Madden report proposed legislative change in relation to coroner's post mortems but the key proposals from Madden are not to be included in this legislation. It would be better if the legislation had addressed that but I presume that the Minister is going to address those issues and the report's recommendations through other legislation. I ask him to confirm that is the case because the proposals in the Madden report are important.

I concur with the points raised by Deputy Gould about the way parents have been treated since the publication of that report. There is a need for face-to-face meetings and follow-up, as has been mentioned. I sincerely hope that the campaign those parents have waged to ensure that it is enshrined in law that what they went through can never happen again has been successful. That seems to be the case according to my reading of the legislation but I want the Minister to say, loud and clear on the floor of the Dáil, that this provides a legal framework to ensure that this can never happen again and that no other set of parents can be put through a similar ordeal. I also ask the Minister to clarify whether we are talking about a criminal offence if such an event were to be repeated or whether that is something he will deal with by way of regulation.

7:00 pm

Photo of Donnchadh Ó LaoghaireDonnchadh Ó Laoghaire (Cork South Central, Sinn Fein)
Link to this: Individually | In context

Ar an gcéad dul síos, glacaim an deis, mar aon leis an Teachta Paul Murphy, labhairt faoi chás Dháithí Mac Gabhann agus is mór an trua go bhfuil páirtí amháin ag seasamh sa tslí le go rachadh Stormont ar ais agus an reachtaíocht sin a chur tríd na Tithe sin. I take this opportunity to mention the case of Dáithí Mac Gabhann, who has been the inspiration for a huge campaign in the North for reforms of the kind envisioned here. It is a terrible shame that one party is standing in the way of that and I echo the calls for action in relation to it.

The legislation before us has been talked about for a very long time. For me, it is a matter of common sense that there would be a soft opt-out approach to organ donation. It will add enormously to ensuring that people who are in desperately grave situations and in need of organ donation and related medical assistance can be supported. I take the opportunity to pay tribute to those who, outside of this framework and in the context of tragedy and extreme circumstances, have given that enormous gift that has helped so many people.

I echo the points made by Deputies Gould and Barry in relation to the treatment of the parents in the CUMH. As has been outlined, this was exposed by RTÉ in September 2021. Until that point, those parents had no idea what had happened to the remains of their babies. I do not need to tell the Minister because I am sure he has met many people in this situation himself, but a miscarriage or event like that is a very particular and profound type of grief for a family. To have that compounded by the uncertainty at first, and then the quite shocking discovery of what had happened to the remains afterwards, only added salt to their wounds.

It added to the grief and pain those parents felt and it was completely unacceptable. It is also unacceptable that the parents were, in effect, frozen out. They were promised they would have sight of a draft report but that did not happen. The parents to whom I have spoken have not been contacted since the time of the report. It is a comprehensive report but it clearly points to very poor communication within the hospital system but also with the parents, as well as a lack of respect for what those remains meant to the parents. They needed to have confidence that the remains were looked after and disposed of in a respectful and dignified way, but clearly that did not happen. I urge the HSE to engage again with the parents.

This legislation needs to represent a new start - a change in how parents are treated and in how the remains of these babies are treated. I hope the Bill will underpin that but, in addition, there will be a change in attitude and culture.

7:10 pm

Photo of Cathal BerryCathal Berry (Kildare South, Independent)
Link to this: Individually | In context

I am grateful for the opportunity to contribute on the Bill. As the Minister pointed out, it is historic legislation. There are so many people and families waiting for organs or clarification. I very much welcome the Bill, though I wish it had come before the House long before now. I am very happy to support its passage through the Dáil for several reasons.

The first is from a school of anatomy point of view. As a person who is fortunate and privileged to have passed through medical school, I recognise the extraordinary gift given by the many people who have provided their bodily remains for medical students. It is important that those cadavers are treated with the height of respect. They are already treated with the height of respect but when a law is more than 190 years old, that is probably a sign it needs modernisation and to be upgraded. A phrase used in medical school is that these cadavers are the students' first patients and their first teachers. I pay tribute to those who have donated their bodies and to the families who facilitated that. They have made an astronomical contribution to the study of medicine and had a profound impact on the lives of medical students.

The second reason I am in favour of the Bill relates to post mortems. It tightens the legislation in respect of post mortems, thereby protecting the integrity of the human body before and after death. As colleagues have noted, we are aware of the retention of human organs without the consent or even the knowledge of the relatives. This is particularly pertinent when it comes to the retention of the organs of children. I am glad there has been at least some improvement in terms of tightening that up. The scandals of recent years should never be allowed to happen again. I like the fact that there is more guidance in the Bill in respect of coroner-directed post mortems, with a stipulation that there will be more information sharing and communication with the families concerned. I very much welcome that.

The third reason I am supportive of the Bill relates primarily to the flagship component of the Bill, namely, organ donation. This is hugely important. I agree that it is likely to increase the organ pool significantly and it does so in a very balanced way. People will not be pressurised or forced into it as there is a soft opt-out mechanism. That is a very good way to go forward. It is in keeping with international best practice. I like the living donor component of the legislation, as well as the aspect relating to altruistic donors. Finally, patients or other persons who wish to make an altruistic donation of an organ to a person whom they do not know will not have to leave the jurisdiction to make the donation; they will be able do so in this jurisdiction from now on. That should be very much welcomed.

Most important is the fact that the Bill embeds consent, including informed consent, into the entire process. There will be a register run by the HSE and people will be allowed to opt in or out. It will even allow for the fluctuation of people's consent, such as a person changing his or her mind on getting older. The Bill will allow people to move onto or off that register as required. It emphasises the centrality of the patient and the donor, as well as the family of the patient, which is important.

I recognise there has been extensive consultation in the formation of the Bill. That is to be welcomed. The Bill has arrived later than expected but there seems to be consensus that it is a positive step forward. In conclusion, I am happy to support the Bill and I look forward to its swift implementation.

Photo of Ruairi Ó MurchúRuairi Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context

All Members would agree the Bill is needed and long overdue. We all get the history behind the Bill and the fact that certain families had to go through brutal circumstances . What happened in the context of organ retention and incineration can only be called a scandal. We know that, beyond what happened in CUMH, there were audits by the HSE and, at best, inappropriate means of dealing with organs, particularly those of children, even in the period from 2018 to 2021. We need to ensure the rules are specific, there is no room for manoeuvre and everyone is aware of the protocols that are required. Families have been through dreadful circumstances that one would not wish on anybody and they certainly do not need more pain to be heaped upon them, as was the case as a result of what had happened in some hospitals. There were two aspects to it. People did not realise organs had been retained or incinerated and they then had difficulty in trying to get to the truth. We have all had difficulties in dealing with certain organs of the State and the fact is this compounds bad situations and makes them far worse. It sometimes seems that no lessons have been learned, unfortunately, but I would like to think they have been learned in this case.

In fairness, all present would welcome streamlining in the context of dealing with coroners, inquests or even post mortems. I dealt with a case involving a difficulty relating to the identification of a body. I do not want to get into the detail of the case but that family, local to me, were dealing with the tragedy of having lost a family member and then had further pain heaped on them by a totally inappropriate process. That system must be changed.

We all recognise the need for organ donation. There is a need to ensure we have a system. We all welcome the idea of the soft opt-out system in the context of consent but we need to ensure that system is resourced as much as possible and that organ donation is facilitated.

I add my voice to those calling for the legislation to which the name of Dáithí Mac Gabhann has been attached to be put into operation. For that to happen, we need the DUP to get its head out of the clouds and to see the Executive returned to action in the North.

Photo of Mattie McGrathMattie McGrath (Tipperary, Independent)
Link to this: Individually | In context

I too am glad to have the opportunity to speak on the Bill. All present recognise that organ and tissue donation is a service that saves lives, improves the quality of life and has cost benefits for the health service. All Members know people who have had the benefit of organ donations. Indeed, my late uncle donated his body to medical science. There are many people who are affected in that way.

Bills like this one have a long gestation but they have to be tightly couched because there can be room for ambiguity. The most significant aspect of the legislation is the introduction of a new opt-out system of consent to organ donation. Under the proposed changes, the organs of deceased individuals will be donated, where possible, unless it can be shown that the deceased did not consent to the use of his or her organs. It is very important that the wishes of the deceased are fully accepted, incorporated and implemented without fear or favour.

That is vital. I, too, totally abhor what went on in various hospitals, including Cork University Hospital, in respect of the incineration of babies' bodies. It was shocking and horrendous. We are all talking about this tonight and want to do so, but nobody looks at the staggering and shocking number of abortions carried out in this country and what happens to the bodies of the babies who are slaughtered in the womb. We know the horror stories that go with this. There are thousands of cases. Even during Covid, when you could not get into a hospital if you were dying, you could get in for an abortion. The number dipped only slightly. This is horrific, as far as I am concerned. Obviously, the mother consents or is persuaded or otherwise, but we cannot just worry about what happens to miscarried babies on the one hand when that is happening on the other, maybe in the same hospital.

The proposed legislation, we are told, will facilitate the creation of an opt-out register. In the event that a deceased individual has registered their wish not to become an organ donor on the register, the deceased's organs will not be transplanted and the deceased's next of kin will not be consulted. That is very important. While one can opt in, it is very important to have an opt-out provision if somebody does not want to have organs donated. We must respect people's wishes. The spouse will be the next of kin, but where there are siblings of equal balance there will be difficulties also. Therefore, it is not simple, or anything like it. We would not want to be proceeding glibly. Under the existing system, the decision rests with the next of kin, even where the deceased person has an organ donor card or has indicated a wish to be an organ donor on his or her driving licence.

The overhaul, in practice, aims to improve the State's rate of organ donation. Currently, you are three times more likely to require a transplant than to be an organ donor. That is a worry when people are looking for transplants. In some cases, there may be great excitement and a sense of hope when people are called but sometimes it does not work. The donated organ might not be suitable or might not take. It can take a long time to settle. We live in hope and expect medical science but we do not need any ambiguities in legislation like this. We have to have it copper-fastened, tight, clear-cut and correct for anybody implementing it.

7:20 pm

Photo of Michael CollinsMichael Collins (Cork South West, Independent)
Link to this: Individually | In context

We all know and recognise that organ and tissue donation is a service that saves lives. It improves lives and has better health benefits, as well as cost benefits. Ireland has the highest rate of donation in the world, at 20.3 donors per million of the population, but there is no doubt but that there has to be an opt-out system. A family must consent to any organ donation. In my view, Ireland has the highest respect for death. This is not bettered anywhere in the world from the moment of death, which is very traumatic for any family. At the moment of death, an undertaker is called and the family's requests are worked on immediately to help it in its time of mourning. It is different in other countries, where the funerals may be put off for weeks. Families have to struggle on with their daily lives and then grieve at a later stage.

Organ donations should be encouraged by all means but body parts should never be used without consent. I did not think this could happen in this country but sadly it looks like it has. Prior to my entering politics, I worked for many years as an undertaker with Arundel's in Schull. In that time, help was given to every family. For all undertakers, each funeral is sacred and the human remains are totally respected. I thank all the kind undertakers throughout west Cork and the rest of the country, whom I meet daily. They have never stopped giving, even during the Covid pandemic and extreme times. The burial and cremation of human remains are sacred, and the grave or location of ashes becomes a place for people to go to give them time to heal, which can take many years in some cases. I would find it sad beyond belief if parts of bodies ended up sent for research without the consent of the family. I find it astonishing to think that babies could be cremated without the knowledge of their parents or with no consent. This is unforgivable, to say the least.

We have to consider other aspects of this. I had a difficulty in west Cork recently when a family wanted to bury a loved one on their own property. I hope this Bill covers this area. There seems to be no one Minister responsible for deciding whether a person can be buried on their own private property and, if so, how. The upset caused to the family I dealt with was not needed at such a delicate time. The matter went without any great clarification, so much so that the family ultimately cremated the remains. This was sad in its own right. I tried to address it through various Ministers but got the run-around, which is very unfair and wrong.

Regarding the benefits of organ donation, we understand that some 600 people in Ireland are on the waiting list for an organ donation. Organ donors are important because they can save the lives of people suffering from organ failure. Someone with organ failure may have only a limited time to live without a transplant. For example, someone with heart failure may need a heart transplant to survive, and someone with kidney failure may need a kidney transplant to survive. Organ donors can provide these lifesaving transplants, which can give recipients the chance to live a normal life.

Additionally, organ donation can improve the quality of life of people suffering from organ failure. It also helps to reduce the waiting list for organ transplantation and decreases the number of deaths due to organ failure. Organ donation is a selfless act that can have a profound impact on the lives of many. I thank each and every person who has donated an organ. It is not an easy decision but one that must give families great satisfaction.

I once again thank each and every undertaker in west Cork. They are fine, decent men and women who work tirelessly to make sure families are respected and they give of their time considerably, day and night, without complaint. I thank all the employees who work with the undertakers in west Cork, including Bandon, Kinsale, Clonakilty, Barryroe, Rosscarbery, Leap, Skibbereen, Ballydehob, Schull, Bantry, Kealkill, Castletownbere, Dunmanway and Drimoleague. I meet each of them regularly. They are fine, decent people.

Photo of Michael Healy-RaeMichael Healy-Rae (Kerry, Independent)
Link to this: Individually | In context

All the debates in this House and all the Bills that come before us are important but I believe this Bill is very important because it has the potential to save lives and create awareness of the fact that over 600 people are waiting on a transplant list for an organ donation. The subject of death and dying, and all they entail, relates to a sad event from which, unfortunately, no family or person escapes. In debating this, we must do so in a respectful way and ensure we do everything we can to preserve the great tradition of dealing sensitively with people at a time of great grief in their households. Whether you refer to opting in or opting out, trying to encourage people to be more aware of the organ donation system and the fact that it can be used to save lives is very important.

It is important to recognise the great work our excellent undertakers do in dealing with families at a sensitive time. I will start by taking the opportunity to stay very close to home and mention a great person, our local undertaker, who is heading into his mid-90s. He has been our undertaker for eight decades and works along with his son. I am referring to both Danny Quill and his great father, John Quill, of Kilgarvan. They and all the other undertakers, be they in south, mid-, north, east or west Kerry, provide an excellent service.

There is an important point I want to raise today that really has to be considered. Given its importance, I, on behalf of the people of Kerry, ask the Minister to do so and take note of it. I am referring to post mortems. A post mortem can be very important to a family because they may want it to get answers. However, the excellent people who carry out post mortems, whether at the morgue in County Kerry, in University Hospital Kerry, or the excellent facility in Cork University Hospital, can find themselves hit with a massive number of people at the same time, through absolutely no fault of their own. The family of a person deceased in County Cork, for example, will want the deceased's body to be returned home as quickly as possible so they can have a wake at home or the funeral.

In many cases that cannot happen, not because of any fault of the people involved in what needs to be done, but because they need more assistance and more of a budget. I ask the Minister to please look at the whole situation surrounding post mortems. It is an extremely vulnerable and sensitive time for a family. Yes, it has to be done. If there are any questions that need to be answered for the family, they must have the post mortem, but we must try to have it done in a speedy timeframe. That is what I ask the Minister to do.

I again express my heartfelt thanks on behalf of the people of Kerry who have had to use the services of the people providing the post mortems. I thank them for what they have done and I thank our undertakers for the great work they have done, are doing, and will do in the future.

7:30 pm

Photo of Richard O'DonoghueRichard O'Donoghue (Limerick County, Independent)
Link to this: Individually | In context

There are 600 people in Ireland on a waiting list for organ donation. In the past, the number of organ donations in Ireland has been relatively low compared to other countries. In 2020, there were a total of 106 organ donors in Ireland, resulting in 318 transplants. The number of organ donors has been increasing in recent years, but the country still has the lowest rate of organ donation compared to other countries.

Education is key to success. The person dying must be well enough and sick enough to accept the organ. Today, this cannot be just about bringing a Bill through the Dáil. There needs to be back up and supports for the person receiving an organ. They need to be mentally well to accept the organ. For the donors and the donor's families, there is also a need to have proper personnel in place at the time of donation. Families whose loved ones are donating the organs can see the work of the undertaker, the work of the hospital staff, and the work of the personnel involved. This work is hugely sensitive at a time when people are grieving. On the other side, it is a time when they are giving life to people who are very sick. To me it is an act of kindness. We can be thankful to the people who donate their organs. Again, I go back to education as the key. We must ensure that the proper system is in place to support the family whose member is receiving the organ, and also to support the families grieving the person who gives the organs. The important role played by our undertakers in our counties is huge with the amount of support they give to the people at that time of need.

I hope that in the case of the opt in and the opt out, the decision is for people themselves, and that the option is there. I keep coming back to the education and the supports that need to be put in place to make sure that anyone willing to give the organs will receive the supports. In recent times we have seen what has been happening in Limerick and in other accident and emergency departments around the country. I would like to think, in the case of a transplant operation, that no operation would be postponed based on not having the proper medical staff available due to another emergency, that all of the proper personnel would be in place and that there was an emergency case, it would not interfere with any other procedures taking place in a hospital. I know of some people who went for organ donation, had been in care and prepped before the operation, only to be told when the time came - not only once but twice in some cases - that the operation would not go ahead due to complications or problems with staffing. We need to make sure that supports are put in place for the people who are giving their organs and for the family of the person who is donating.

Photo of Danny Healy-RaeDanny Healy-Rae (Kerry, Independent)
Link to this: Individually | In context

I am glad to have the opportunity to talk about this very important topic here this evening. We all know that organ donation is so important. It can make a difference and ensure that someone's life is saved. It can save the lives of people who are suffering from organ failure, be it a heart transplant, a lung transplant or a kidney transplant. We must recognise also where a family member gives one of their kidneys to ensure another family member can stay alive and have a normal healthy life. Transplants can reduce waiting lists in hospitals and decrease the number of deaths, so it is very important as we are helping others.

This Bill should increase awareness to ensure we get more donors. It is very important, however, to note that the Bill includes what the Minister for Health describes as a "soft" element. The next-of-kin of the deceased person will continue to be consulted and have a veto on any proposed transplant. If the next-of-kin objects to the donation, the donation will not then proceed. This is very important. It is a very traumatic time for someone when a family member passes away, be they young or old. It is so traumatic. Death never comes at the right time for anyone. For the family left behind it is very important to do what they feel the person who has died would have wanted. That is usually what happens and we must ensure this continues to happen. People are being told to indicate their wishes for after death. The new law creates a sort of soft opt-out regime for organ donation. The Bill aims to create a presumption that individuals are donors unless they have opted out of the scheme. The family still has a veto, however, if they feel there is something wrong or that it should not proceed. They will have the veto on the donation going ahead.

I, too, recognise the great work being done by the undertakers under extreme pressure. All of the undertakers in Kerry have certainly been under pressure for the past two months given the number of people who have died. I must recognise the work done by Quills in Kilgarvan for 70 or 80 years. It is operated now by John Quill. This man is way up in his 90s and still goes behind his shop counter every morning, and is in charge of the funerals with his son Danny. They do great work, as do the undertakers in Kenmare, Killarney, Rathmore and Gneevgullia and Firies, and all the other places. They are great people. They are very professional people. We must recognise that since the death grant was abolished they often bury people without getting a penny. I am very sad this grant has been abolished because it meant so much to families that did not have the funds to bury their next-of-kin, or if there was no one else after the dead had passed. As a result of the undertakers we have, no one has gone unburied in Kerry. They undertake to carry out the service the very same as if they had been paid or would be paid. The Minister must recognise that the Government denied the grant. We all know at this stage who did it: the crowd that were in power from 2011 to 2016.

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
Link to this: Individually | In context

I thank the Deputy.

Photo of Danny Healy-RaeDanny Healy-Rae (Kerry, Independent)
Link to this: Individually | In context

Those were the people who took the death grant away and left so many people disenfranchised. I am glad to say that the undertakers-----

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
Link to this: Individually | In context

The Deputy is taking advantage of my gentle nature.

Photo of Danny Healy-RaeDanny Healy-Rae (Kerry, Independent)
Link to this: Individually | In context

The undertakers in Kerry have not let the people down-----

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
Link to this: Individually | In context


7:40 pm

Photo of Danny Healy-RaeDanny Healy-Rae (Kerry, Independent)
Link to this: Individually | In context

They have buried them all without any money, some of them.

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
Link to this: Individually | In context

Deputy Martin Browne, have we the view from Tipperary, please?

Photo of Martin BrowneMartin Browne (Tipperary, Sinn Fein)
Link to this: Individually | In context

Go raibh maith agat, a Cheann Comhairle. At the start I would like to thank all the undertakers in Tipperary, just in case I forget them later on.

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
Link to this: Individually | In context

How are the undertakers getting on?

Photo of Martin BrowneMartin Browne (Tipperary, Sinn Fein)
Link to this: Individually | In context

I will not mention all the towns, just all the undertakers. This is an important Bill. It would have always been so given its nature and the matter of dignity, self-determination and of course the life-saving consequences of organ donation. The purpose of the Bill is brought into even sharper focus given the revelations we have become acquainted with involving the improper retention and disposal of organs. The Madden report of 2005 found that doctors stated that they did not tell parents about organ retention for the parents' own good. It went on to divulge how doctors at the time did not attach an emotional significance to the organs of a deceased child. Such instances warranted a full and proper examination of the system and a concerted effort to address this attitude and the rules that cover the retention of organs. While overdue, it is welcome that we are in a position to discuss this Stage of the Bill designed to address the shortcomings inherent in the system at the moment.

To start with, I will provide some background to what we are discussing today and the importance it signifies. At present organ donation and transplant rates are below average when compared to other EU states. We were in 18th place for transplants in 2020 and when it comes to deceased organ donations in 2020 we were at 17th place. Clearly more needs to be done and the introduction of the soft opt-out organ donation register is welcome. This means that a person must object in their lifetime, or their family can object after their passing if in their view the person would have objected. There are certain other criteria that would apply in other circumstances including consultation with the person's family, which differentiates between soft opt-in and a hard opt-in. This is welcome. However, for the application of this system to be successful, it is necessary that its administrative demands are met with resources to establish the register and deal with the process.

The Bill in isolation will not add to the number of organ transplants that will take place. It will be of no help to the 600 people on the transplant list. There is another point that has been made by the Irish Donor Network and the Irish Kidney Association which needs reflection in order to provide certainty and develop a system whereby this country can move up the organ donation and transplant scale. They say that without adequate resources and infrastructure this legislation will not result in additional donations. The Irish Kidney Association has pointed to an instance in 2021 when a transplant did not proceed at the Mater hospital because of the unavailability of an ICU bed. The Irish Donor Network made a similar point, saying that for significant organ donation, transplant and post-transplant care, resources need to be available to allow for additional beds for pre- and post-transplant care as well as operating theatres, public awareness, doctors and multidisciplinary staff including nurses, cytologists and microbiologists. Resourcing issues have contributed to poor practices in the past that have led to retention scandals. I will conclude my remarks by welcoming the progress made in this Bill. There are aspects that will need further attention and my colleagues have already addressed these matters. It is welcome to be able to discuss this Bill today.

Photo of Catherine ConnollyCatherine Connolly (Galway West, Independent)
Link to this: Individually | In context

I welcome the opportunity to speak on this Bill. I have done my best to get my head around it. I welcome the detailed speech given by the Minister. I will come back to the glaring absence of any reference to the necessary infrastructure to make this a success. The Minister said he has no doubt that this will increase the donor pool and pointed to Spain. That is not accurate, actually. On the system that appears to be wonderful in Spain, as Deputy Shortall already pointed out, during the committee discussion of the general scheme they expressed caution. Mr. Mark Murphy of the Irish Kidney Association cited a Spanish study which found:

In summary, the evidence does not support that shifting towards presumed consent [which this Bill is doing] will solve organ shortage. But still today, this measure is seen as a magic solution that departs from conviction that low deceased donation rates result only from a negative public attitude.

The authors of the study go on to say that we should never blame the public. What came out through the committee hearing, which I will come back to, was the absolute need for infrastructure. There was some disagreement or variation in respect of the best way forward between the representatives of the different organisations. The representative from the Irish Kidney Association said we need both an opt-in and an opt-out. Other delegates said no, we just need an opt-out. Notwithstanding that they were all in agreement on the common denominator of infrastructure, dedicated staff teams and a nurse. There is no mention of that anywhere in the Bill. I come from Galway city and we have a hospital closed or open depending on staff out in Clifden. Staff is essential but there is not a mention of it, or costing for it or how we are going to do it.

I have some concerns that we are simply going for an opt-out. I share the concerns expressed by the Irish Kidney Association. It asked for both an opt-in and an opt-out. The ethics of consent are at the heart of all of this. They have been utterly ignored by the medical profession for a very long time in this country. Obviously it has changed in the last number of years. It seems to me that we need to keep it to the fore. I welcome the Bill. I welcome the opt-out register. However, the Bill would have benefitted from prelegislative scrutiny. I disagree with most of my colleagues here who say that prelegislative scrutiny was not necessary. I think it was absolutely necessary given the background to the Bill and the time it has taken to come this far. It would not have made a huge dent into this time if a few days had been taken to look at this Bill. It covers so much in its six Parts and 105 sections. It really needed proper discussion. I do not know why prelegislative scrutiny was put aside.

Part 2 provides for transplantation and brings in the concept of deemed consent, which we are told is in place in most countries in Europe. Part 3 provides for pathology practice and post mortems and the absolute need for consent from the family or the person before they die. Part 4 provides for a legislative structure for anatomical examination. Imagine that we are utterly dependent on an 1832 Act. Almost 200 years later we are taking pride that we have finally got around to changing legislation. Part 5 provides for public display of bodies and what is needed there.

There is also a section providing for giving tissues or cells to pharmaceutical companies. It sets out that the manager of the hospital makes the decision and then goes to the family and asks them. I would have thought that it would have benefitted from further scrutiny and analysis as to when and how we give tissue, cells and so on to a pharmaceutical company. Given the background to this, I would have thought so. That is not the Minister's fault but I think he agreed with the waiving of prelegislative scrutiny.

I want to thank the Library and Research Service for its very detailed Bill digest. I want to say that publicly and out loud. Very often it is left struggling with very little time. In this situation it had time, the Bill was published in time and it looked at it and produced a comprehensive report.

Let us go back to where this Bill is coming from. Nothing here was proactive. No member of a medical profession reflected and said we should do something about our medical paternalism, as Professor Madden has described. There was no self-reflection. This came from England, from Bristol and the other two hospitals where it was exposed that there were, I think, more than 30,000 bodies or organs kept. Finally here as a result of the inquiry in England, questions began to be asked and we got the Dunne inquiry. Does the Minister remember that? It was set up in 2000 and was supposed to take a couple of months. It was supposed to be a two-stage inquiry, a private inquiry by the senior counsel followed up by a committee inquiry. It did not happen. It cost €20 million. Parents for Justice withdrew from it. Eventually some type of report on three hospitals in Dublin was given to the former Minister, Mary Harney.

Nothing came of that, though. Most importantly, there had been no redress or accountability for parents whose babies' organs had been sold off without their knowledge. This is the background to the Bill and happened in 2005, when the Government said that would be the end of it.

The Government asked Professor Deirdre Madden to look at all of the documents examined by Ms Anne Dunne SC as well as all of the information and how it was hidden from parents that organs were taken during post mortems and kept and various things were done with them. Professor Madden stated that communication was, at the very least, bad or non-existent due to paternalism. She made 50 recommendations. Someone in government - perhaps the Minister for Health - might tell us whether those 50 recommendations were ever implemented. Some of them relating to consent and the matters I have outlined are included in the Bill, which I welcome, but there were 50.

One might believe matters would change, but fast forward to the Willis report in 2009. It was an independent audit of 32 hospitals and there were calls for regulations concerning consent for the removal, retention, use, storage and disposal of organs. Fast forward again to "RTÉ Investigates" in 2021. Thanks be to God for "RTÉ Investigates". Often, we in the Dáil follow on from what it does. It investigated the ongoing practice of the disposal of perinatal organs at Cork University Hospital, with 18 families identified and so on. I do not wish to dismiss this in any way, but it has already been outlined. I am simply raising it as the background to the Bill. There was an internal audit by the HSE in 2022 following revelations at the Cork hospital. According to the audit, a consent policy to cover all aspects of the post-mortem process was not in place. This was almost 23 years after questions were raised in 1999. Organs from two perinatal post mortems had been incinerated since 2019 in Limerick. It was the policy of Our Lady of Lourdes Hospital, Drogheda, to send retained organs for incineration and so on. At University Hospital Galway, organs from 28 babies were held for between 12 and 32 months. At Portiuncula, organs from two babies were kept for between 16 and 18 months. So on and so on, all because of a lack of staff, which has not been addressed.

There will be an opt-out register, but there will be a bureaucratic difficulty with it. When it comes time for the organ donation, who will be present to inform doctors as quickly as possible that someone has opted out? I do not see how that will work in practice. All of this should have been teased out at the pre-legislative scrutiny phase.

7:50 pm

Photo of Joan CollinsJoan Collins (Dublin South Central, Independents 4 Change)
Link to this: Individually | In context

I support and welcome the Bill. I believe it was 2018 when there was a coming together of the Irish Donor Network, IDN, with various groups making the case for the opt-out system and for a human tissue Bill to be introduced. It is important that all Bills undergo pre-legislative scrutiny. I share Deputy Connolly's concerns in that regard.

The IDN has warmly welcomed the Bill and has stated that the Bill does not just bring the obvious benefits to the recipients, but also benefits recipients' families and society in general, including the health service and the wider economy, by promoting transplantation and working towards the most effective organ donor system possible. I join and support the IDN in this view.

Ireland ranked 18th out of the EU's member states in terms of our overall rate of organ transplants and donations in 2020. This was a slip from 14th in 2019. We saw decreases in lung, heart, liver and kidney transplants in 2020. Last year, 669 people were on our transplant lists. Transplant services were heavily disrupted by Covid-19, and the knock-on effect of this is continuing. We need to improve. There is no need for Ireland not to lead in transplantation rates and services. I hope that the Bill contributes to that.

I welcome the soft opt-out system. Wales has seen significant increases in donation rates since its adoption of such a system. The Kidney Wales Foundation has stated that this system has been a major positive in many ways and has persuaded England and Scotland to adopt similar policies. Mr. Philip Watt, chief executive of CFI and chair of the IDN, has stated that transplant and donor rates in Ireland have the significant potential to be improved by this legislation. A soft opt-out system has received support in the public consultation process, which I welcome.

While I welcome the Bill, I join the IDN in its calls for greater resources and improvements in the organ transplantation and donation system. It has called for an immediate organ donation and transplant revitalisation fund and a detailed plan for raising Ireland into the top ten countries in the EU for transplantation and organ donation by 2025. The IDN states that we need beds for pre- and post-transplant care, more post-transplantation doctors and multidisciplinary teams, and better funding for assessment and organ retrieval. I call on the Government to implement these recommendations and ask the Minister to address them in his summation. We need an effective plan to raise public awareness and an education programme that explains the changes in organ donor consent. Proper and appropriate funding for this education programme around the soft opt-out will be needed to ensure the benefits and effectiveness of the new system.

I welcome and support the Bill as a positive step forward in improving our transplant and donation system. I congratulate everyone who has worked hard to get us this far. I reiterate the calls from the IDN for greater resources and ambitions for improving transplantation and donation and ensuring that the Bill is a success.

Transplantation is a welcome and life-saving operation for anyone receiving a transplant and is an emotional time for his or her loved ones. Putting in place resources in terms of nurses working with parents, families and so on will be important to the promotion of organ transplantation.

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context

I thank colleagues for their support for the Bill. It is great to see such a strong signal coming from Dáil Éireann and that there is cross-party support for the Bill. I thank Deputies for this constructive debate. Many good ideas have been raised, as have many reasonable questions, and I will try to cover some of them in the few minutes remaining.

I echo the comments of Deputy Joan Collins, in that we are focusing on the great benefits for many patients who are waiting for organs. However, it is important to acknowledge as we progress the Bill that this topic is a difficult one for many families whose loved ones - children or other relatives - have been donors through tragic circumstances. It is the most precious of gifts that any donor could give. Nonetheless, it is often done in the most unfortunate and difficult of circumstances.

Questions were raised about the treatment of organs, including incineration, abroad. I once again offer my sympathies to those families who, having experienced the tragedy of losing a child, then had to go through the distress of hearing that the organs of their children had been retained in ways they should not have been. Under the Bill, consent will be needed from families for arrangements relating to burial, cremation and the return of organs and tissue material relating to post-mortems. I wish to be clear - organs should never be incinerated. Those organs should not have been incinerated. What happened was unacceptable, and it is important that this was recognised in the HSE report into the incident.

This legislation will ensure human organs, tissues and bodies will be treated with the respect they should, and that all arrangements will be in line with the wishes of family members. That is essential.

Colleagues have made various requests and issues have been raised by some of the advocacy groups. I am looking at all of those. I will consider them with my Department officials. Where there is an opportunity to make amendments that improve the situation, I am very open to doing so on Committee Stage. Questions have been raised around compiling detailed information on organ donations, donors and other information that can help us improve donation rates. I am happy to share with colleagues that I allocated funding in 2021 and work is under way on that. Further work has been ongoing that will inform the ongoing policy decisions and considerations.

Colleagues very understandably raised the issue of resourcing and capacity. Resourcing and capacity are not covered within legislation, as they rarely would be. However, I fully accept and agree with the point that this Bill is one piece of what is required to increase transplants in this country. It is a very important piece and it is being supported for that reason, but we do need the resources in place as well. It is my intention they will be. To that effect, a strategic review of services is under way to identify where the gaps, shortages and opportunities are. I am expecting a report back by the end of March. That review will inform where we allocate future resources. A sum of €7 million has been added in recent years to the service, which is important.

Colleagues referenced ICU and, quite rightly, the need for ICU capacity. We have just had the biggest increase in ICU capacity ever. There has been an increase of about 25% in ICU beds since the start of Covid, because of Covid. That is part of the first phase of the increase. There will be another very substantial increase in the number of ICU beds. It will help facilitate transplants and a lot of other critical care in the coming months and years.

Colleagues asked questions around offences and oversight. HIQA, as the regulator, will be responsible for ensuring standards are met across the hospital systems. On the question of whether a contravention of the legislation will constitute an offence, I can confirm it will be an offence. The Bill provides that the standards can be set out in regulations. Obviously, those regulations will be in line with best practice. For egregious breaches of the regulations, the Bill provides for prosecution of a criminal offence, with a sanction of a class A fine, €5,000, imprisonment for up to three months, or both. The sanctions are very serious. However, the aim of the legislation, of course, is to raise standards across the system. HIQA will be central to that.

I have covered most of the issues raised. If there are others, I ask Deputies to contact me. My officials have been taking detailed notes of the various questions raised. Once again, I thank my officials and the officials in the Department of Justice, who have been working very closely to put this legislation together. I thank colleagues for all of their input. I thank again the healthcare workers who are working in this field every day, who are doing incredible work and who I know are happy to see this legislation. Finally, I thank the advocacy groups who have been looking for this for a long time. It is a good day and it is great to see such a powerful and united statement going out from Dáil Éireann that we are going to back this and we are going to make sure this service gets better and better for all of those hundreds of men, women and children who are waiting for a transplant.

Question put and agreed to.