Joint Committee on Assisted Dying díospóireacht -
Tuesday, 21 Nov 2023

Access to Palliative Care and Social Supports: Discussion

An Cathaoirleach

The next item on our agenda is ensuring access to palliative care and social supports. From the Irish Association for Palliative Care, I welcome Dr. Hannah Linane, chairperson of the association and specialist palliative care doctor, and Dr. Una Molloy, advanced nurse practitioner, palliative care for older people. The Irish Hospice Foundation is represented by Ms Paula O'Reilly, CEO, and Professor Susan O'Reilly, board member and chair of the association's research, advocacy and policy subcommittee. Hope Ireland is represented by Dr. Miriam Colleran and Ms Emer Maguire. We are grateful to the witnesses for sharing their knowledge and wide experience.

The question and answer format for this meeting is that the members will ask questions after the witnesses have made their opening statements. A member can ask an individual witness a question or address a question to all of the witnesses. I ask that the witnesses keep their opening statements to the five minutes. We run on a very tight schedule. Do not blame me; I am warning in advance. I am strict about the time because otherwise we will be here until tomorrow morning. As I said, witnesses should keep their opening statements to five minutes. The clocks will flash around the room anyway. I invite Dr. Linane to make her opening statement.

Dr. Hannah Linane

I thank the Chair and the committee for inviting us to speak. I will hand over first to Dr. Una Molloy and then I will finish the opening statement.

Dr. Una Molloy

The Irish Association for Palliative Care is a non-government organisation initially formed in 1993 with the purpose of promoting palliative care nationally and internationally. We use our collective expert voice to advance palliative care in Ireland. The membership, which comprises various health professionals, reflects the entire spectrum of those who work in or have professional interest in the provision of palliative care in Ireland. Palliative care is a philosophy of care that improves the quality of life of patients and their families, who are facing challenges associated with life-threatening illness, by preventing and relieving suffering. This is done by means of early identification, assessment and treatment of pain, and other physical, psychosocial, and spiritual problems. We acknowledge the suffering of those with serious medical illnesses. Our focus is to help people experiencing distress by alleviating their suffering and this does not include ending their lives.

Palliative care may be provided at any stage of a life-limiting illness, not just at the end of somebody's life. Some people fear being subjected to treatments that are inappropriate, burdensome and ultimately not beneficial. We endorse and support the right of competent informed patients to decline medical treatment even if this leads to their deaths. Palliative care cares for people both on life-prolonging treatment, and when there is a redirection of care, to focus on treatments that provide comfort and symptom control. Some requests for euthanasia or assisted suicide result from worries of uncontrolled physical or psychological suffering and there is a misconception that dying is inherently painful, traumatic and undignified. Basic principles of palliative care require that doctors and other healthcare professionals support patients to be comfortable and pain free. Palliative care focuses on the delivery of care in a person-centred compassionate way. In practice, there can be a misconception that medications, particularly opiates, are used for hastening death rather than for symptom control. This misplaced belief and fear can form a barrier to patients achieving good symptom control.

As a society, there needs to be more discussion about death and dying to dispel myths and fears and to be informed about end-of-life care options. There also needs to be education and support of healthcare professionals having these discussions, which can be challenging and emotive.

Dr. Hannah Linane

I will expand on why the IAPC is against any change in the law to legalise euthanasia or physician-assisted suicide. When euthanasia or assisted suicide is available as a choice, a key risk is that someone may not make that choice freely. The ability to identify and prevent this is a major concern. For those who are dependent on others for care, assisted suicide or euthanasia could be seen as a duty. The ban on healthcare professionals shortening a person's life, protects patients who may be vulnerable and basing their decision to die on life situations that can be addressed with the provision of appropriate supports. There is a need to focus on support for carers, respite provision in the community, an enhancement of psychiatric and mental health supports, as well as care and support of our aging population and those with increased palliative care needs.

Safeguards may attempt to utilise prognoses to avoid misuse of euthanasia or physician-assisted suicide. Prognostication is not precisely predictable and errors are common. It is dependent on one's own clinical experience and knowledge and remains an imprecise subjective judgment. Suffering is a subjective experience unique to the individual, which results not just from physical but also psychological, social, and spiritual influences. Assisted dying legislation is a solution that fails to address the root causes or complexity of a concept and experience such as suffering. There needs to be a focus on addressing the societal deficits that contribute to this experience or situation, which may change.

Palliative care seeks to address the complexity of suffering by responding to a person’s individual physical, psychological, and spiritual needs. We believe that dignity incorporates more than just the principle of autonomy. It is not dependent on a person being of use or interest to others, nor is it based on a person’s merits. It is a concept that requires a person to be treated with respect. It is the shared responsibility of healthcare professionals to treat patients with compassion, to manage symptoms, and focus on a person’s comfort and dignity at end of life. There is a concern that a change in the law would support a belief that certain types of life are not worth living and are of lessor value. A person's life has value regardless of physical well-being or productivity.

We acknowledge the suffering of those diagnosed with serious medical illnesses and feel that solutions lie in addressing the reasons for euthanasia or physician-assisted suicide requests, and ensuring patients have access to resources including timely, effective, and equitable palliative care services and a greater understanding around death, dying, and end-of-life care.

Dr. Miriam Colleran

Gabhann Hope Ireland buíochas le baill an choiste as ucht an seans labhairt leis an gcoiste ar an ábhar tábhachtach seo. Hope Ireland is grateful for the opportunity to address this important committee and thanks the members for the comprehensive analysis of the complex subject of assisted dying.

I am a palliative care consultant working mainly with adults with advanced progressive illnesses in a hospice and an acute hospital. I see people for pain and symptom management and to help care for them and support their loved ones with the challenges of progressive serious terminal illnesses. People on all sides of this discussion want to provide caring, compassionate, and person-centred care for persons with advanced progressive illnesses. As Michelle Obama, the former First Lady of the US, said, “Words matter." Hope Ireland agrees with the importance of clarity of language. Assisted dying means different things in different jurisdictions and varies from prescribing a medication for ingestion by a person such as in Oregon, which is called assisted suicide by the Dutch Government, to the doctor or nurse giving the medication to the person that will cause their death as happens in Canada, which is called euthanasia by the Dutch Government. Given that the Dying with Dignity Bill 2020 proposed legalising both forms of assisted dying, I will discuss both in this presentation.

With quality and safety, we are constantly balancing the risks and potential benefits of actions. In the case of assisted dying, the risk is of the inappropriate or wrongful death of a person. This is the ultimate error. When discussing the conflict in Northern Ireland, the peacemaker and Noble Prize winner, John Hume, said in an essay in the London Review of Books, “There is not a single injustice in Northern Ireland today that justifies the taking of a human life.” Under our law, because assisted dying is illegal, there are no wrongful deaths from it. However, there is still a constant need for continued improvement in the care of persons with advanced and progressive illnesses and support for their loved ones. Our fellow Europeans, the Danes, are also considering this issue. They, like us, want to provide compassionate care. In the recent Danish ethical council’s opinion on euthanasia, 16 of the 17 members recommended against the legalisation of euthanasia, stating that:

The members point out that euthanasia risks causing unacceptable changes to basic norms for society, the health care system and human outlook. The very existence of an offer of euthanasia will decisively change our ideas about old age, the coming of death, quality of life and what it means to take others into account. If euthanasia becomes an option, there is too great a risk that it will become an expectation aimed at special groups in society.

A major concern when considering assisted dying is the risk of inappropriate deaths, the risk to persons who may be vulnerable, and that the right to die may become the duty to die. The World Health Organization “estimates that 1 in 6 people over 60 years of age suffers from abuse”, so it is necessary to consider if safeguards proposed are safeguards in practice. This includes the suggested safeguard in the assessment by two medical practitioners. Detecting coercion and abuse is complex, specialist, and challenging work. In the national safeguarding report of 2022, which detail all types of abuse of adults aged 18 and higher, 3% of referrals were from hospital staff and 1% by GPs, respectively. This report states that "psychological and physical abuse remain the main types of abuse reported” and also that for those over 65 years "immediate family members" were the most frequently reported persons causing concern.

I will now hand over to Ms Emer Maguire.

Ms Emer Maguire

I thank everybody for the invite to speak before the committee and I apologise if I am a little bit nervous.

Four weeks ago, we buried the ashes of our beloved uncle Jay. He was the youngest of ten children and a much-loved uncle of 26 nieces and nephews. He would have celebrated his 60th birthday on 21 October. Jay died by euthanasia in Switzerland on Tuesday, 26 September. He was in good physical health and travelled on his own to Switzerland. He was met there by Sean Davison, director of Exit International in the UK. Davison’s role in this is to manage all aspects of Exit’s application assistance programme and ID programme. In essence, he ensures that the application to die is successful and identifies bodies after death. Prior to Sunday, 1 October, no one in our family had ever heard of Exit International.

The previous week, Jay had spoken to his brother about the Ireland-Scotland rugby match. He had arranged to meet his sister for a drink on the night of Saturday, 30 September, and had also told his nephew who was coming home from San Francisco that he would leave out a key for him if he was not home when he arrived on Thursday. When he failed to turn up to meet his sister and his nephew arrived at an unusually clean but empty house, both became worried about his well-being. Those closest to Jay were aware that he was struggling with his mental health and had encouraged him to seek help. However, he had managed to mask most of this with most of the people around him. In the weeks coming up to his death, he had gone on golf outings and to an Ireland rugby match and had chatted on the phone to a number of relatives and friends, none of whom had any suspicion of what was to come.

Having notified family and the Garda, my cousin continued his own investigation into Jay’s disappearance. He found a torn-up piece of paper with a number on it, which he promptly rang. A man answered and, when asked whether he knew my uncle, he replied that Jay’s sister would receive a call in the afternoon. About 30 minutes later, she received a call from Sean Davison to tell her that Jay had died by euthanasia five days previously in Switzerland, he had been with him when he died and had identified his body after his death, my uncle had been cremated on the morning of Sunday, 1 October, and his ashes were to be sent to her house during the week. He went on to say that my uncle had been joyful on the day of his death and had requested that his family not be notified of his death until after his cremation. Davison named his organisation and said that Jay had been a member for 15 years.

An Cathaoirleach

I apologise, but we try to refrain from naming people.

Ms Emer Maguire

Okay.

An Cathaoirleach

His name was not included in the opening statements that were submitted to us.

Ms Emer Maguire

He is in the public sphere. That is why I assumed it was okay.

Deputy Gino Kenny

May I ask the Cathaoirleach for clarification on his point about opening statements?

An Cathaoirleach

We just have a small issue. There is no problem, Emer, and we are sorry. This is difficult for you, which we appreciate, but we have to have the opening statement ahead of time. What you are presenting to us is not actually in the opening statements. We appreciate the sentiment of what you are saying, but I had to interject because of that. There are very strict rules about what someone can say in an opening statement. If you are going off the script, we cannot have that at this time. It can be raised during the questions afterwards. If it is of assistance and if there are issues that you need to get out there, you can raise them during the questions and answers session, if that is okay.

I invite Ms O’Reilly of the Irish Hospice Foundation to make her opening statement.

Ms Paula O'Reilly

I thank members and the clerk for the invitation to the Irish Hospice Foundation to speak to the committee on the topic of accessing palliative care and social supports.

We are a national organisation with over 37 years of experience in the field of dying, death and bereavement. Our vision is an Ireland where people facing the end of life or bereavement are provided with the care and support they need. We understand how difficult the conversation on dying, death and bereavement is. We also understand that assisted dying adds a further complexity to this discussion. We have advocated for any exploration of the issue to be robust, respectful, inclusive and informed.

Regarding current experiences of dying and death in Ireland, more than 35,000 deaths were registered last year. This equates to nearly 100 people dying every day. Of those deaths, 83% were over-65s. The Central Statistics Office projects that this number will increase to just under 46,000 by 2040. Of Irish adults, 74% would prefer to die at home, but only 23% will do so. Hospitals remain the most common place, with 44% of people dying there, 23% dying in our nursing homes and only 8% dying in a hospice. Cancer and heart-related disease are the leading causes of death.

What are the public perceptions of death? In 2016, we conducted a survey, entitled "Have Your Say", to find out what was most important to Irish citizens as they thought about living with illness, death and bereavement. Over 2,500 people responded and the findings suggest that most people want to be pain free, be treated with and die with dignity, and feel comfortable and cared for, ideally at home. The survey also found that people had worries about being a burden on their families as they approached the end of life.

In 2022, we carried out our "Time to Reflect" survey, which was completed by over 2,200 people. The aim was to examine the impact of Covid-19 on people's attitudes towards dying and death. The findings revealed that people continued to prioritise supports for end-of-life and bereavement care.

In our recent consultation report, "Dying Well at Home", a good death was described by focus group participants as comfortable, free from pain and suffering, honouring the end-of-life wishes of the person, and allowing people to die with dignity in the place of their choosing and with those they wanted present.

There are enablers to a good death, but there are also obstacles that people face in realising a good death in Ireland today. Access to timely palliative care is associated with improved quality of life. The percentage of people dying that will require palliative care is projected to increase by up to 84% by 2046. However, these figures only account for people in their last year of life and many people are living with more complex needs and, therefore, will require longer palliative care. There is a need to focus on strengthening access to primary palliative care and generalist palliative care. Access to care can be improved through expanding the knowledge of end-of-life care across different professional and care settings.

Regarding community and home supports, the services delivering primary care and home supports are facing ever-increasing challenges. Waiting lists continue to grow for accessing community supports and there is an alarming number of people who have been assessed and approved but remain without adequate home supports.

Conversations are key to enabling a good death. They are dependent on the person and his or her family being supported and having good relationships in place with healthcare professionals, particularly in terms of advance care planning.

On the lack of bereavement supports, bereavement is relatively invisible in formal policy, yet it impacts many people each year. For every one death, up to ten people are bereaved and significantly impacted. This means that more than 350,000 people are grieving a death every year. A lack of preparedness can lead to poor bereavement outcomes for people. This can be affected by an inadequate level of understanding of and information on caring, practical considerations such as planning for a funeral, and emotional and medical preparedness in knowing what to expect at the time of death.

There are a number of recommendations in our submission that apply regardless of how a person is supported to die or whether the committee recommends to legislate for change in this area. These recommendations are to publish the new adult palliative care policy; to strategically plan to support an expansion of community-based primary palliative care and home care services so that people at the end of life can die at home; the provision of education and training to improve death literacy; a cross-departmental commitment to a bereavement approach; the development of standards for bereavement care; and the initiation of a register of advance healthcare directives by the Decision Support Service, as outlined in legislation.

An Cathaoirleach

I thank Ms O'Reilly and all of the other witnesses for their opening statements. I call Senator Seery Kearney.

Senator Mary Seery Kearney

I thank the witnesses for their statements, and also for the decades of incredibly hard work that has gone into the care of people. There is not one person in this room or listening to us who has not been touched in some way by a family member receiving beautiful and person-centred palliative care in a hospice. I commend the witnesses on that.

What struck me in reading the opening statements was that each time in previous committee meetings, and for those I listened to because I was unable to be here, dignity in dying, or dying with dignity, is synonymous now, as a result of the Bill, with that end-of-life choice, with being able to determine when one's life will end, and with having the legislative oversight to be able to do it at home. By "at home" I mean in Ireland. When I read our witnesses' statements I hear "dignity" in a very different way. Perhaps have experienced it in my own family in a very different way where that dignity is in the care of the individual.

I was reflecting on where I was at one stage in the hospice in Harold's Cross, when the staff brought in a drinks trolley to a family member. That was felt to be very holistic and real where this is okay, is part of living and is part of an end coming. I want to explore with our guest speakers that dignity because I have read extensively, listened to and watched the speeches of Kathryn Mannix. Her book, With the End in Mind, considers the issue of embracing some of those difficult conversations. She has explained how to anticipate that it is more than just the individual who is facing death, but also the family. She has said that the person and his or her family can be assisted to embrace the fact that a death is coming, and helped to ensure it is dignified.

My mother spent all of my childhood praying that her mother would have a happy death. We all knew instinctively what that meant, which was to be surrounded by family, at home, comfortable and not in pain. We have a perception which is synonymous with particular illnesses that anticipates that it is going to be painful and that there is going to be suffering. Today, I believe, we have an opportunity to properly set aside some of those stereotypes and views and to discuss the question of dignity in a broader sense, which we need to do.

I ask the Irish Association of Palliative Care to respond in the first instance.

Dr. Hannah Linane

I can answer that. We have also listened to many people coming up to this meeting. I believe there is a concern that there is an attitude that dying is not a dignified process in itself. Even the name of the Bill suggests that the process of assisted dying is somehow equated with dignity, when dying itself is a very dignified process. Having had the privilege of looking after people in what is a very profound and vulnerable time in someone's life, I have seen some of the most dignified end-of-life scenarios. I believe much of dignity is wrapped up in societal attitudes to what encompasses dignity. Yes, autonomy is an important part of that and is something that we try to ensure the person still has over so many things. That comes into advance care planning about what the person values and into ensuring we can support them in their value-based system to ensure their family is supported. A big piece of that is around education about what dying looks like. There can be a sense that all dying is perhaps painful or that some of the signs that someone is dying could be interpreted as distress when, really, it is a normal part of the dying process.

Senator Mary Seery Kearney

Kathryn Mannix is very strong on that.

Dr. Hannah Linane

There are changes in breathing. There can be noisy breathing. As part of dying, the person becomes less responsive. That has nothing to do with the medications we use but is part of the dying process. A large part of trying to give somebody at the end of their life value and meaningful time with their family involves ensuring they feel supported, have the information they need and are given space through adequate supports to their family, rather than having to take on a load of care, which, unfortunately, they might not have enough support for. Dignity, in itself, is a concept and is something we need to try to promote through compassionate care. Dying is a dignified process and many deaths are very beautiful and profound.

Senator Mary Seery Kearney

I have mentioned Ms O'Reilly's movement.

Ms Paula O'Reilly

I thank Senator Seery Kearney. If one looks at the long submission from the Irish Hospice Foundation and the consultation we have done with the public, one will see that the Senator is correct that the term "dignity" comes up a great deal. It comes down to people's understanding of what end-of-life care looks like. One of the key recommendations for us relates to the fact that Ireland is very good at funerals but not so good at having discussions around dying and death. We very much have an opportunity to ensure end of life, and the choices around it, is done in a compassionate way.

Our recent report, "Dying Well at Home", referred to the small things that families want, such as music playing in the room, as the Senator mentioned. Importance is attached to who is around the dying person, their affairs and their care. That very much requires co-ordination of care in order for us to be compassionate and to deliver what most people want, which is to die at home. Not only must palliative specialists and palliative care be available towards the end of life, but there must also be a broader system that looks at where the home care, the education and the financial impact is. When one is looking at dignity at the end of life, one has to look at it as part of a systems approach and one must consider how all of these parts are integrated to ensure end-of-life care and bereavement support are there.

The Senator mentioned the idea of a good death. In some ways she is right, in that Kathryn Mannix talks about the stages. One must not get carried away with the idea of a good death, however, because even if one has all of these factors, death is still difficult and people will still grieve. It is a question of looking at how compassionate we can be around end-of-life and bereavement care for people.

An Cathaoirleach

I thank the Senator. I call Deputy Kenny to speak, please.

Deputy Gino Kenny

I thank the Cathaoirleach. Good morning to everybody at this committee meeting. Over recent months, the committee has been having a very important discussion on this very important topic. My questions are for the Irish Association of Palliative Care. Does the association's statement reflect everybody within the palliative care spectrum? Are there any dissenting voices with regard to the association's position on legislative change around assisted dying?

Dr. Una Molloy

No. Our statement comes as an accumulation of opinion from our group. We did not specifically poll individuals but the statement was developed by a representative group from all of the different professionals within it. I would say it is reflective of the organisation's position.

Deputy Gino Kenny

Okay. The third or fourth paragraph of the association's statement refers to those who are refusing medical care or treatment, or food and water. I am sure the association has seen this in certain circumstances, although it may be rare. When somebody refuses all medical treatment and all sorts of intervention, which is their prerogative, surely his or her life can have a very painful and complicated end.

Dr. Una Molloy

If the Deputy is speaking about intervention helping them recover or to treat their illness, that is one piece. However, palliative care is not an either-or option if one is not having life-sustaining treatment. We would hope that in communication with the person who has chosen not to continue with life-saving treatment, we would offer them an alternative, we would be with them and support them in managing their symptoms, and we would try to establish the meaning of all of this for them in how we can support them through a difficult time.

Deputy Gino Kenny

Would that set of circumstances, when someone says they do not want any medical intervention in this situation, be common?

Dr. Una Molloy

Yes. From my own clinical experience, I am seeing a patient in the community right now who has decided not to complete any chemotherapy. She has an advanced disease. She has decided that she would rather have quality than quantity of life.

We are visiting her and working with her. The beauty of that is she has been able to have a conversation with her family, who support her completely. As she may develop symptoms or require more support from us, we will be there to do that and to discuss options around what she would like at the end of her life.

Deputy Gino Kenny

Some would consider that de facto assisted dying. As in the person says, "I do not want any more treatment because of A, B and C. I want to take control and have a say in how I die." I do not see a major difference between that and legislative change around someone who is terminally ill and has only weeks or months to live, who says, "I want to end this on my terms rather than anybody else's terms." Is there a difference?

Dr. Una Molloy

There is a difference in my opinion and experience. The choices we are discussing now are people who have decided not to pursue active treatment, but they are still people who have wants, needs, hopes and dreams and may develop symptoms and perhaps have families and loved ones who they would like to spend time with. Our main goal would be to provide a very person-centred approach to their care, address their needs and improve their quality as they end their days.

Deputy Gino Kenny

Last week, the Daily Mail published an opinion poll on assisted dying. There have been many opinion polls on the issue over the past number of years, and the results have been very consistent by showing that three quarters of the population would support legislative change in respect of assisted dying. Are the public wrong? Are they wrong to base their views on their own experience and thinking ahead to say that in certain circumstances, people should have a right and a say in how they die? Who is wrong? Are the people of this country wrong? I respect the views of the witnesses on assisted dying. However, a cohort of people have moved on from certain dogmas in all settings and now want to see something change regarding assisted dying and for who will want to avail of that. In those circumstances, who is wrong?

Dr. Hannah Linane

I do no think it is a matter of right or wrong. The issue is much more complex. We would have concerns. In 2021, a poll was done in the UK which showed that over half of people thought that assisted dying actually meant that a person had the right to refuse licensing measures or hospice care. I would hope that people understand their options around end of life.

Deputy Gino Kenny

I think people really do. When they are polled, they understand and comprehend what they support.

Dr. Hannah Linane

There is still a lot of work to do in terms of public awareness about death and dying. One of the things about this conversation is that it brings that conversation to the fore. People are able to talk about their fears and give us a chance to tease out what are people frightened off and how can we address those issues. We feel that there is a lot of work to be done that does not involve assisted dying. It is about talking through these issues to reverse societal death.

Deputy Gino Kenny

I understand that perfectly. I know I probably repeat myself here every week, but I think it is a fundamental human right of a person, in certain circumstances, to say he or she does not want to go through this. As our guests have stated, if people want to refuse medical treatment, that is their prerogative. What if somebody says he or she does not want to go through days, weeks or months of pain and wants to be able to say, “I want to stop”? That is what this committee must grapple with but that, to me, is the fundamental question when it comes to assisted dying.

Dr. Hannah Linane

The principle of autonomy keeps coming up. It is such an important principle and is something in healthcare that we try to prioritise for all people. I suppose there is always a balance of other principles, however. We would have a great concern about the safety of the people we look after, which has been discussed already – the vulnerable people. We do not feel that there would be safeguards that would protect those vulnerable people.

An Cathaoirleach

I suggest that we broaden the discussion to include other witnesses.

Deputy Gino Kenny

Yes, and I have to be as productive as possible.

An Cathaoirleach

Exactly, and you do. Next is Deputy Cullinane.

Deputy David Cullinane

I welcome all of our witnesses and I wish to begin by thanking the organisations for the work they do. To those who provide palliative care, I wish to say a sincere thanks on my own behalf. My mam died in a palliative care centre in Harold’s Cross a number of years ago. She was in St. James’s Hospital and she had a cancer diagnosis. She spent a year in care, starting around Christmas or January, and it was a difficult time for her family. She got great care in St. James’s Hospital but the difference it made to be transferred from the hospital to a palliative care centre was like going to a different planet and we got very kind support from staff. My constituency of Waterford now has a palliative care centre, which provides first-class services.

I hope that one of the things to come from this committee, and I know that the core purpose of the committee is to look at the issue of assisted dying, but there has been lots of learning about palliative care and that learning has been really useful. Whatever about changes to the legislative position - and that is a matter for this committee and maybe, ultimately, the public, if there is a referendum or a citizens’ assembly - I hope that at this point one of the key things that will emerge from this committee will revolve around the need look at the recommendations that are being made in the context of improving palliative care. There have been lots of very positive recommendations - again, from the witnesses today - that I think would serve any Minister for Health well in terms of ensuring access to quality palliative care, mental health supports, health and social care and treatment for chronic pain. We know that there have been some developments as there are chronic disease management teams in communities. Again, I thank everyone for their work.

I know that the Cathaoirleach called on us to broaden the debate, but I want to first direct my questions to the representatives of the Irish Association for Palliative Care. When we talk about euthanasia and assisted suicide, the terminology used is important. Others would use the term “assisted dying” as opposed to those of "euthanasia" or "physician assisted suicide". Do our guests accept that? Is that a term that they would also use or would not have a difficulty with being used to describe what they might call assisted suicide while others would call assisted dying?

Dr. Hannah Linane

We would not have chosen that terminology. The Deputy is right that many different terms are used in the literature. It was more to keep clarity. We are talking between euthanasia and assisted suicide and assisted dying. It all can mesh into an overlap, so we chose for our position paper-----

Deputy David Cullinane

No. I know that the association chose the terms that are used.

Dr. Hannah Linane

Yes.

Deputy David Cullinane

Does Dr. Linane appreciate that other people would use a different term?

Dr. Hannah Linane

Yes, I appreciate that.

Deputy David Cullinane

Does the association describe palliative care as a form of assisted dying?

Dr. Hannah Linane

The Deputy would have to be clearer about what he means by the term “assisted dying”? If it were to become a term that implied that there was a deliberate attempt to end somebody’s life, then I would not use it to describe palliative care. I would describe that we care for people in their final journey and provide end-of-life care at a time when their life is coming to an end, but I would not consider that assisted dying. I would consider that we assess and treat their symptoms, make them comfortable and attend to their psychological, social and spiritual needs, as required.

Deputy David Cullinane

I welcome the clarification that Dr. Linane would not describe palliative care as assisted dying, but why the hesitancy in using the term?

Dr. Hannah Linane

People think about the terms "physician assisted suicide" or "euthanasia" for longer than using the term "assisted dying" because the latter could mean, very broadly, anything else. That is what I think.

Deputy David Cullinane

We do repeat ourselves on this committee.

The topic comes back to whether we legislate. There are rare cases but there have been examples of citizens going to court to vindicate what they see as their rights, their autonomy and so on. I am sure the witnesses will appreciate they are very difficult cases, some of which were in the public domain. The people who took those cases - having met some of their family members, I would keep an open mind on this issue because I am genuinely here to listen to what is being said - would not describe the request of their loved ones as suicide. From their perspective, they would have had access to good-quality palliative care and they would have had clarity of mind. They would have been comfortable, inasmuch as they can be comfortable. They would have a difficulty with using the term "assisted suicide" to describe these cases. Would the witnesses accept that?

Dr. Hannah Linane

I think the term "suicide" brings up a lot of emotion to do with what could be called "traditional suicide". I could see why people would try to differentiate between them.

Deputy David Cullinane

I am talking specifically about those who are in really difficult circumstances and coming to the end of their lives with a terminal illness that none of us would want to see any of our loved ones endure. Even though they have all the access to healthcare that possibly could be given, they still want to make a choice. My understanding of their views is that they have a difficulty with the term "assisted suicide". I am not saying it is not the appropriate term and cannot be used. I am saying we need clarity on what we mean by "assisted suicide", "assisted dying" and "euthanasia". There are different degrees in all of it. I am saying that to be helpful to the witnesses.

Dr. Hannah Linane

The issue with the term "assisted dying" is that it is open to interpretation. There is a misconception of what palliative care does. We do not hasten people's deaths. It has to be very clear that this is differentiated. There is a big fear when we use medications in palliative care that we are somehow hastening things. Actually, that can be a barrier to people getting medications that could control their symptoms.

Deputy David Cullinane

I will conclude by thanking the witnesses for their testimony and evidence and for the work they do.

Deputy Emer Higgins

I thank our witnesses for being here with us and for all of the care and support they provide to people. Palliative care is one of the most important services provided in Ireland. It supports not only the person at the heart of the care but also their entire families during an extremely difficult time. I have taken on board the message that further investment and further support are needed. That has been a huge focus of this committee. As a Government TD, I will campaign for the publication of the new national adult palliative care policy to back that up. I will give that commitment.

Dr. Linane spoke about how palliative care is about supporting people at the most vulnerable time of their lives. That sums it up. The theme of today's meeting is protecting vulnerable individuals from coercion, in the context of safeguards in the event that the committee recommends to legislate in this area. It is our third meeting on this theme. I am starting to get a bit anxious because I feel we have not heard much in the expert testimonies about how, if we are to legislate in this area, how we should shape those safeguards. It is really about making sure we are protecting the most vulnerable. The witnesses are all experts at protecting both vulnerable people and people who are not vulnerable but who are coming to them at the most vulnerable time of their lives.

I would like to use my time to focus on this issue. If this committee were to legislate in this area, the most important aspect of that legislation should be around safeguards. The most practical way in which people could contribute to that would be by having on the record their views around what those safeguards should be and what they would look like if they were in place. That is what I would like to use my five minutes to get to the bottom of. I will ask all of our organisations those questions.

An Cathaoirleach

How would the witnesses like to spread that out?

Dr. Miriam Colleran

I thank the committee for the opportunity to answer. This is an extremely important topic. I am approaching it from the perspective of my work with the patients and families we care for and also from my lived experience as a family caregiver. Both of my parents died of rare cancers. My mother died at home and my father died in hospital in ICU, so I am also coming from the perspective of a family caregiver. I also have an interest in quality. Professor Doherty and I co-authored an article examining assisted suicide and euthanasia from a quality perspective. That paper was published earlier this year. I can forward it to the committee. It looks at this question from a quality and safety perspective because a new medication or a new intervention that is being started goes through a series of trials, as Senators and TDs will be aware. We are always considering risks and benefits but here we have the ultimate risk of inappropriate death. What we see happening internationally, sadly, with the introduction of assisted dying is that - I have no doubt it comes from a perspective of compassion on all sides among those considering this topic - it gets introduced for persons who have terminal illnesses as a group in society. I have to say I am a bit uncomfortable about that because that involves picking a group in society, treating them differently and othering them. It is well intentioned but it means picking a group in society and saying, "We are going to treat you differently."

Deputy Emer Higgins

If we are to legislate in this area, how should it be done? We only have three minutes left and other witnesses have to come in.

Dr. Miriam Colleran

Of course. What happened in Canada and is happening in other countries is when it is introduced for a section of society, it is challenged because it is discriminatory towards others. That is my language; I am not a legal person.

Deputy Emer Higgins

Sure.

Dr. Miriam Colleran

What we see happen in other jurisdictions is that it becomes progressively expanded. My concern, as I mentioned in the context of the national safeguarding report, is that inappropriate death - somebody dying in error - is the ultimate mistake. As legislators it is very difficult because for them in terms of-----

Deputy Emer Higgins

I am very conscious that we have only two minutes and I have not heard Dr. Colleran propose any safeguard.

Dr. Miriam Colleran

The only safeguard is keeping it illegal.

Deputy Emer Higgins

Okay. Can I hear from other witnesses on what safeguards they think should be introduced if legislation were to happen?

Ms Paula O'Reilly

In terms of the conversation to date and some of the cohorts we have spoken about such as older people, the Deputy will see from our submission that older people are the people who unfortunately are most likely to die. Two of our recommendations are key in terms of education and training around end-of-life and bereavement care. Conversations like the one we are having with Dr. Linane on end-of-life care really require healthcare professionals within primary care, and not only specialist palliative care professionals, to be very educated so they are skilled at having those conversations around preparedness and end of life. As for advanced care planning, it is great that we brought in the assisted decision-making Act and that we have the Decision Support Service. Part of the legislation looks at advanced healthcare directives and a register for them. That provides a really good opportunity to look at what discussions and supports people require around end of life and what that broader picture to support people is.

Deputy Emer Higgins

That is really helpful. I thank Ms O'Reilly.

Dr. Una Molloy

It is important to ensure that people have very intense psychological assessments and that there is plenty of time when people make a decision like this, or attempt to do so. Perhaps they do it because they feel they have nowhere else to go. The TILDA study - I think - looked at older people who had said in the last month that they had a wish to die. When they came back two years later, 80% of them said they did not have a wish to die and that was just how they felt at a particular time. That is really important because when people are shocked and vulnerable, they make decisions that are perhaps not the correct ones.

Deputy Emer Higgins

Picking up on what Ms O'Reilly said about education and training, who does Dr. Molloy think would be best positioned to be involved as practitioners in those intense psychological assessments? It is interesting that Dr. Molloy mentioned TILDA. I know that the TILDA study has done an incredible amount of work on a very specific portion of the population who would be the ones we are talking about.

Dr. Hannah Linane

Our position is that this is a complex issue.

We would feel there are no safeguards that would ensure there are no deaths of people who may not have made that choice if they were supported in other ways. It is complex in that suffering is not just physical. As I mentioned last week, there is a psychological component. There might be a financial component and societal supports. It is such a complex issue that you would be looking at it case by case. We are concerned there is too high a risk that people would die who may have been supported better.

Senator Rónán Mullen

I echo colleagues in thanking all of the witnesses for coming in to share their expertise. I will start with Ms Maguire. We heard from her and from the late Brendan Clarke. Both testimonies were moving from different perspectives. In the context of asking Ms Maguire about her experience, there is no need to name any people. She is talking about her family's experience of being completely left out of the picture in this case, where a cherished loved one had mental health issues and availed of suicide abroad with the help of Exit International. Ms Maguire has brought out today that this is never just an individual choice. People around are also affected. If I were to put it to her and her colleagues, some would say that if it had been available in Ireland in certain circumstances the family might have been kept informed. That is a fair point. However, even if they had been kept informed, there would still have been the hurt we have heard of from so many other families where suicide occurs.

Ms Emer Maguire

A couple of things have come up around the family being left out. I was speaking about dignity, and I know Deputy Kenny asked and talked a few minutes about it. There was no dignity for our family. We were left waiting 18 days for his ashes to be delivered before we could have a funeral for our uncle. There was no contact. Everything was done outside of his family's knowledge.

Senator Rónán Mullen

I am not putting words in Ms Maguire's mouth when I say that in all of these situations, there is not just the individual person's choice. Other people are affected as well.

Ms Emer Maguire

Yes, 100%, and this had an effect. I have been listening over the past weeks and heard people mention the person's choice. There is a wider context to that person. That person was loved. I believe they were influenced, and, as a result of that influence, completely left their loved ones out of this process.

An Cathaoirleach

Will everyone assist us when it comes to the naming of people? We already dealt with this. Will they be a bit broader, if they see what I am getting at?

Senator Rónán Mullen

In other words, we must avoid naming people.

An Cathaoirleach

Yes. We have to be careful about the way we handle this.

Senator Rónán Mullen

I am finished with that line of questioning, but I thank the Chair. We are hearing that people may sometimes lack the autonomy or conditions necessary for autonomy. The availability of an assisted suicide option may draw those with mental health issues or depression towards decisions that are traumatising for their loved ones. I direct this to the palliative care experts among us. Is it fair to say, as seemed to be the position of the psychiatrists last week, that there seems to be no confidence safeguards are possible in this area? Last week we heard about how people affected by mental illness might get caught up.

Dr. Miriam Colleran

When we look at it from an international perspective there are increasing concerns. There are definitely concerns in Canada about what is happening to people who are vulnerable. The UN disability rapporteur was concerned about track 1 in Canada. Track 1 was the initial introduction of euthanasia. In Canada, they predominantly practice euthanasia rather than clinician assisted suicide. The vast majority of deaths through their medical assistance in dying, MAiD, system, are performed by the clinician who administers the medication to cause the person to die.

Senator Rónán Mullen

Is that the case even if there is a law intended to be more specific and narrow, with assisted suicide rather than direct euthanasia requiring some diagnosis of a terminal illness and a certain prognosis of life?

Dr. Miriam Colleran

That is a really important question. It is important to note that prognostication is difficult. Some jurisdictions, like those the Senator is referring to, propose a prognostication that it is for persons who have a terminal illness with a prognosis of maybe six months. I am a front facing clinician. I see patients every day of the week. We cannot prognosticate like that. I might be seeing someone in outpatients who unfortunately has a terminal illness. We will call him John. I can estimate in terms of years, long months, short months, weeks, long weeks, short weeks and then we go day by day. We cannot put a number on it because it is not possible to do that. It is not actually possible to prognosticate to six months.

Senator Rónán Mullen

I will turn to Dr. Linane for a moment. Many people will be surprised to hear it being clearly said that there is no evidence that appropriate and careful use of painkillers shortens life. It is often presented that you are shortening life anyway when you turn up the morphine.

Dr. Hannah Linane

Absolutely.

Senator Rónán Mullen

That is maybe putting it too bluntly. Where does palliative sedation come in? That does not satisfy those who want this on grounds of autonomy and complete control. However, is it in the end possible to manage pain and suffering in most, if not all, cases if sedation is factored in where necessary towards the end?

Dr. Hannah Linane

You come up against the principle of double effect a lot, and whether it is permissible to a perform an action intended to be good, even if there are unintended bad consequences when the risks and benefits are weighted up. You could argue that for most medical interventions, giving antibiotics could result in allergic reactions. It tends to be looked at just for end of life, but we use our medications so carefully. As part of normal dying people become more fatigued and less responsive. We use medications very carefully and with doses that would not hasten someone's death, but I think it is a big fear for people. It actually makes people uncomfortable and prevents them from going on medications that could improve their symptoms a lot.

Senator Rónán Mullen

A loved one of mine spent some time in intensive care during the summer. They were high dependency rather than critically ill, thank God. There was a moment we were grateful for, during a couple of days when she was in complete charge of her own pain relief, with the button. She was thankful for that button and so were we.

Dr. Hannah Linane

The big fear is that people would be frightened of accepting palliative care or good symptom control. That does impact on how well someone feels towards the end of their life. I would hate for people to be worried about that.

Senator Mary Seery Kearney

In principle, I am one of the people who, had I been asked, would have said I broadly support the choice of assisted dying. I do not want to give a misconception about myself. I differ from Deputy Higgins in that I think over these three sessions on coercion we have looked at mental health and discussed that. We have looked at palliative care supports and I hear the witnesses loud and clear. We have an increasing and aging population. We need to scale up palliative care supports and make sure they are a choice. We have talked about psychological assessment. I come back to the perception of death, because Dr. Linane focused on this. When you are present at someone's death, there are misunderstandings about changes in breathing. There is a perception of distress.

I have family members who have the lasting view that there was distress at the end of their mother’s life. However, when I read Kathryn Mannix’s story, I realised that was not what it was at all, and I became an evangelist for that.

One of the key points is that death is a natural part of life. You can have a diagnosis, and there are issues which go with that. None of us knows how we would respond to that. However, the perception of what death may look like is an influencing factor. We need to explore that a little bit more because I think that can be coercive in future decision-making.

Dr. Una Molloy

I work every day seeing patients in the community. Much of my work is around preparing the person and their loved ones for the moment of dying. I try to help people understand what it is like to care for somebody at home and what it is like as they eat less, because everybody loves to feed people and make sure everybody is happy when they are eating and drinking. I prepare them for the natural slowing down of their body and how they might sleep more. It is also about giving families the opportunity to say the things they would like to say and do the things they would like to do. In fairness, we try to keep the focus on living and trying to make sure all the moments are as meaningful as possible. In preparing for those final days, it is really helping families understand exactly what the Senator said, such as the changes in breathing patterns and how somebody will sleep more. We encourage people to talk to them and be with them. Those last days can be so powerful and healing in many ways for families. The important thing is to have the conversation and not be afraid to speak about it in a way that if we talk about it, it will happen. We know it will happen and now we want to prepare you for that journey.

Senator Mary Seery Kearney

Somehow, that myth needs to be broken. The discussion needs to happen so that people know what death looks like rather than this preconception of how it will be painful, because that is not necessarily the case.

Dr. Una Molloy

I recently took care of a family in community where the family was very frightened of their mam dying at home. They were afraid of what it might look like and how they would cope. They thought about transferring their mam to hospital. In discussion with me and other members of the team, we supported them to keep their mam at home. They were happy because we talked them through every step of the way. Afterwards, they told us they were so happy they had someone support them to make that decision. Their mam died at home, and they were pleased with that outcome.

Senator Mary Seery Kearney

I appreciate that.

Deputy Gino Kenny

I wish to put on the record that where voluntary assisted dying is legislated for, the vast majority of people who will avail of it will go through palliative care. That is a fact. They should be complementary in some ways. Somebody who is in a palliative care setting or does not choose to go through palliative care should have the choice of voluntary assisted dying. That is important. We also recognise that even though we have modern medicine and people are living longer, not all modern medicine can ameliorate certain conditions. Again, that is a fact. Palliative care is very good in this country. Obviously, we need more investment. However, there are situations where palliative care does not ameliorate somebody’s suffering. Again, that is a fact. In those circumstances, somebody should be able to avail of assisted dying.

In respect of the Irish Hospice Foundation, I again thank the witnesses for their statement. Like David, I had an experience with my close relative and hospice care. It was an amazing experience. Even though it was a very sad occasion, it was a good experience because of how the person was cared for, passed away and so forth. It mitigated the sadness in some ways. In their statement, they said that certain things need to be funded and there are deficits and all that, and I understand that. Preparing for one’s death is important. Having this discussion, even though it is difficult, is very important. If voluntary assisted dying was legislated for, would that change the dynamics of palliative care in Ireland? Will it change the dynamic about talking about one’s mortality and ending where they have a choice? A person could say that they do not want to go through that particular period and they can have a choice. Some people say that will fundamentally change healthcare in Ireland. I do not believe that. I think it is a right of a human being to have that choice. I ask the Irish Hospice Foundation representatives to comment on those questions.

Ms Paula O'Reilly

At the Irish Hospice Foundation, we work towards the best end-of-life and bereavement care for all. If the committee were to make a recommendation to legislate differently or for a change in legislation, the Irish Hospice Foundation would continue to advocate for the best end-of-life care. It would be the individual’s choice as to whether they decide on assisted dying. From our perspective, our role would still be to ensure that everybody who is end of life and who is bereaved would be afforded with the right supports at the right time. Our position would not change.

In respect of the Deputy’s follow-on question on palliative care and that approach, that would not be for us to answer because we are not directly involved. It is a question for our colleagues here, the individual hospitals and how that would impact them.

Deputy Gino Kenny

I wish to ask that question to Dr. Molloy.

Dr. Una Molloy

I feel that it would impact greatly on the provision of healthcare. Our position is that we do not support assisted dying. It would put many healthcare professionals working in palliative care under a lot of pressure.

Deputy Gino Kenny

Why?

Dr. Una Molloy

We do not advocate for it.

Deputy Gino Kenny

If you did not want to do it, you could have a conscientious objection to that. You could do that.

Dr. Una Molloy

Yes, absolutely, but it would change the relationship with us and our patients. It would change the journey that we are travelling on with them. I understand the Deputy’s point about their autonomy but when we think about one person’s autonomy, we have to think how that affects the treatment of other people. If one person wants to choose to die, we then have to figure out how we protect other people who do not want that. I know that in Canada, a number of hospice do not provide-----

Deputy Gino Kenny

That is their prerogative.

Dr. Una Molloy

Absolutely.

Deputy Gino Kenny

The vast majority of people would never in any circumstances want to avail of assisted dying, even if they meet the criteria.

Dr. Una Molloy

Yes. I looked at the Oregon data and it said that a number of people who were approved to participate in assisted dying actually did not. Their time passed and they chose not to.

Deputy Gino Kenny

Yes. That is fine.

Dr. Una Molloy

Our focus is always on quality of life and living. We in palliative care work with trying to do the best quality of life and living. We understand that at the end of many illnesses, people die, but we support them through their living up to that point rather than planning for their death.

Senator Rónán Mullen

Following on from that, is there institutional pluralism in Ireland that would ensure that if the law was changed, hospices and otherwise would be protected? In other areas, like the termination of pregnancies, while there might be individual narrow scope for conscientious objection, there is not really talk of professional objection or institutional professional objection.

I see Dr. Colleran’s hand raised. Does she wish to say something?

Dr. Miriam Colleran

I am speaking from the perspective of international data. When we look at what is happening in Canada, in Quebec, there is now no publicly funded healthcare service that is, as they call it, euthanasia-free.

The provision of medical assistance in dying, MAiD, is linked to public health funding, so an institution cannot opt out. Regarding what Dr. Molloy was alluding to concerning hospices in Canada, there have been situations, and a particular hospice that jumps to mind is Delta hospice, which did not want to provide MAiD, as it is termed in Canada, on site. This hospice, to put it into context, was just adjacent to an acute hospital, so if a person had wished, he or she could have gone to that acute hospital to avail of MAiD. The hospice, though, was defunded because it would not provide medical assistance in dying and euthanasia on site, and it was taken over.

Senator Rónán Mullen

Listening to Dr. Colleran, it strikes me there is a health economics aspect to this subject that we as a committee have not discussed enough to date and that we may have to consider looking at. I refer to the idea that if we change the law, we might unleash dynamics around the funding of healthcare that would, in fact, undermine people's autonomy rather than add to it. That is perhaps for another time.

Is the view of the witnesses that palliative care is inevitably affected? Even if on paper there is to be money for it and people are to be given the choice, could it be the case that once euthanasia or assisted suicide is in place, everybody will have to think about it one way or the other and this in itself could be undermining of palliative care?

Dr. Hannah Linane

I think it is. On the question of whether it will affect palliative care, there is data to suggest that people do have palliative care involvement. What is missing is what this looks like or entails. It is very challenging to have these discussions. It is challenging for the person and healthcare professionals to have such emotive discussions about what end-of-life care will look like. We would be advocating that palliative care be introduced at a time that is not a crisis and it is possible to build up a rapport. Sometimes, there can already be a reluctance to do this, so we want to ensure this is happening. We would also have concerns about adding this new choice into what is already a very emotive and decision-laden time. Suddenly, people will be weighing up the value of their lives due to the fact this is now an option.

Senator Rónán Mullen

I was struck by the whole question of what is dignity, and I was thinking about it in the context of the terrible stuff we are witnessing happening in Gaza now. For me, it is a fundamental principle that everybody has dignity and always has dignity. The question is whether the person's dignity is being respected in a given situation. This is why I do not like the term "dying with dignity", because it implies that unless you do something, you do not have any dignity. Everyone has dignity. It is inherent in us all because we are human. The question is whether the witnesses are confident it is possible to honour people's dignity in full without changing the law to allow assisted dying and euthanasia to be brought in.

Dr. Hannah Linane

I think it is possible to support people to have dignity at the end of their lives. Great work is going on to do that. It is about supporting people in the autonomy they have, asking them about their value-based system and meeting them where that is. It is not about imposing a belief. It is about bringing them along a journey and ensuring they are treated with respect and compassion.

Senator Rónán Mullen

I will ask one final question. We hear a lot of talk about opinion polls and what they say on one issue or another. I am thinking these days, for example, about opinion polls on immigration. The view is sometimes taken that if certain attitudes come up in opinion polls, this can point to the need for more public information. If opinion polls were to show majority support for a change in the law when asked a simple, or perhaps simplistic, question in this regard, would it be the view of the witnesses, and I am asking them all this, that more knowledge about what palliative care can achieve and more knowledge of the potential side effects on other vulnerable people of changing the law would, it is hoped, lead to a change in attitudes and that polling results might, in the fullness of time, reflect this?

Ms Emer Maguire

I am telling a personal story, but everyone, without exception, to whom I have spoken about my uncle's death has assumed he was either terminally ill or elderly. When I dispel this assumption, their opinion changes. As was said, initially, 75% said they supported a change in certain circumstances. When I explained what had happened in my uncle's case, though, they all, without fail, said "No".

An Cathaoirleach

I thank the witnesses.

Senator Rónán Mullen

Does Dr. Molloy want to add something?

Dr. Una Molloy

The important thing about palliative care, if I were to give one message about it to the public, is that it is not just about dying. It is about being with somebody, identifying that he or she has a need for symptom assessment and psychological, social and spiritual support, and that it is a long-run context and not just a moment-----

Senator Rónán Mullen

Helping people to live well until they die is how we described it, and how we heard it described, when I was involved in compiling a report on this subject some years ago in the context of the Council of Europe.

Dr. Una Molloy

Absolutely, and my experience in clinical practice is that this is what it is about. It is about helping people to live well and dealing with challenges as they come along. This would be the message I would like to give people. Sometimes when people hear a palliative care team is coming, they get worried that this is bad news. In fact, often when we sit down, talk, make plans, think of the future, ask people what is important to them, and we think about those things we can do to help to make their lives better, it is then a totally different relationship. It is very important we do not just think about dying.

An Cathaoirleach

I thank Senator Mullen very much. I call Deputy Danny Healy-Rae.

Deputy Danny Healy-Rae

I thank the Cathaoirleach. I am glad to get this opportunity. I thank the witnesses. I have not been in the room long but I have been listening to them in my office upstairs. I thank the members of the committee for their questions as well.

It is a very important and interesting debate. I thank the palliative care team we have in County Kerry. They are leaders in this area and do wonderful work for people in County Kerry who are very ill. We thank all the fundraisers and all the people behind setting up that unit attached to Kerry General Hospital. We all appreciate the work being done there. The only thing is that we hope we will not need it ourselves for a long time yet anyway.

I believe Senator Mullen, in particular, asked very important questions. I will not be asking all those questions again because I concur with a lot of what he has been saying. I agree with him in the most of what he has been saying. I was very concerned when I heard mention of the morphine being turned up and that this is actually turning off the life in someone's heart. I was with someone in recent times and he was talking to me and he was fine. The next thing the instructions came that the morphine was to be turned up. That man did not speak any more to me. There were only hours in it. I honestly feel in my heart that man would not have died as quick as that anyway. I do not know how much longer he was going to live, but I am concerned that decision hastened his departure into another place or world. We do not know where people go, but we do believe that the very most of good-living people do go to heaven. We believe in that. I am very concerned about the aspect Senator Mullen asked about.

Regarding assisted dying, I stand for trying to assist people to stay alive. It is my firm belief we should be doing more for people to help them to stay alive longer. We all know, public representatives in particular, what people go through with chemotherapy and to stay alive. When they are in good health, people tell us they would not want to go through that.

Then you would hear of someone who turned down the chemotherapy option or whatever, and you would hear people saying that was the right thing for them to do. Maybe they were at a very advanced age and not strong enough to go through the chemotherapy.

Do we as human beings look at things differently when we are in good health? When the body is getting weary or sick or whatever, do people's minds change and their focus then is on staying alive and they will not refuse any option given to them to stay alive? I believe that is the case. Our minds change. While we might have said we do not want to go through that at the end of our days if we come to that, do our minds change as we slowly get sicker? Who can be sure that people have not changed their minds? The people inside in the Chamber change their minds every minute. I would like to hear what the witnesses say about that.

Dr. Miriam Colleran

First, I am very sorry for the Deputy's loss. I want to take a moment to address what the Deputy was saying, which is really important. A lot of people have that concern about morphine and opioids. Obviously, I cannot comment on any individual case but the way we use opiates, and when I say opiates, morphine is in the opiate family, is for pain relief in a palliative care setting and for a certain type of shortness of breath that people can get when they have very advanced cancer affecting their lungs or what we call heart failure, when someone's heart is weakening an awful lot. There are certain times we use it to help with shortness of breath as well as with pain.

We constantly tailor the dose to the person's needs, based on what they have or what the symptoms are and how it is responding to us. It is unacceptable to us for someone to have side effects and we try to minimise them as much as possible. In a palliative care setting, there is a lot of evidence to show that using medication safely and properly does not actually hasten death. It is like everything; we have to do things safely and properly. I am very sorry for the Deputy's experience but I am glad he brought up this really important topic because that is a worry for an awful lot of people.

I will finish my point on the Deputy's second question. He asked if people change their minds as they go through illness. Absolutely, yes. The research shows that we all have expectations, hopes and wishes as we are healthier, but as life changes and our experience changes, we all change over time with regard to our hopes and expectations. That happens when people are going through illness too. There may be something that seemed unacceptable to them in the past, but as they are going through it, they get adapting or coping skills. We hope then that we have the resources in the place to help them. I am really heartened by this committee here but also by the huge emphasis on supporting people. In my own area of Kildare and west Wicklow, a really important aspect of helping to support patients and families is through home helps, enabling patients to be in their homes.

An Cathaoirleach

I want to do a third round, so we can go around to each member again, starting with Senator Mary Seery Kearney, for one final point or question from a member.

Senator Mary Seery Kearney

I have two things. First, is it not reasonable that an individual, in anticipating their death and knowing they will have palliative care, would decide or want the option to decide that they would die while aware and that there would be a sense of being part of the saying goodbye? That is where I would see, perhaps, an option or choice of assisted dying appearing within palliative care, while totally accepting we need to scale it up, preserve, ensure and all of that. Rather than going through the passage and the process of death, it is not an unreasonable proposition that someone would say that, when they arrive at this stage, they want to be conscious in their saying goodbye and that they want to do that with their family. I would see that as being a point.

Surprisingly, I find myself referring to Deputy Healy-Rae's point on relativism. It is this idea, which, very early on, was shown to me or discussed with me, where in the various stages of dying, such as embracing illness and diagnosis, what we perceive may be influenced by a myriad of things. Were I to receive a catastrophic diagnosis now, I am sure I would want to be there for my daughter's growing up as much as possible. One is influenced by that.

I would like Dr. Molloy to comment on those two things. Just to reiterate, I think her latter point was very wise.

Dr. Una Molloy

I thank the Senator. In my experience, people are more distressed about the thought of dying than living. They want to live, rather. On that idea about being conscious and making a decision around a person's exact moment of death, from our perspective we work with people to do all that sort of work, being with and communicating with their family. We provide a lot of support around therapies and pre-bereavement work, where we get families to do memory boxes and stories for their children or whoever is important to them in their lives. That, obviously, is based on every different person. It is important we remember that. What I see is distress around the fact they know they are going to die, rather than anything else, and they would like to live as much as possible.

I agree with what Deputy Healy-Rae also mentioned. We do change, and of course we change. We have different reasons we want to be alive. My fear is that if we decide we would like to end our lives on a particular day, that day will come and suddenly we will say we would like to be here for one more week with our daughter or son. In the moments where we have that extra time, we can make decisions that impact on how our families can live without us, ultimately. It is really important we do not forget the people left behind.

Deputy Gino Kenny

All of us have learned a lot of very valuable information about this issue. We have seen other jurisdictions, where they have had different experiences and different parameters for those who can avail of assisted dying. One size does not fit all. Other countries are a bit more liberal with regard to those who can avail of assisted dying. Would that fit in Ireland? I do not think so. As legislators, I do not think we would go down the route that some countries have gone. That is my own opinion, but I think there is a majority view, not only among the public but also in this House, that we need to do something about this issue. Obviously, we are having the committee and so forth, and I hope we will legislate for assisted dying.

Voluntary assisted dying is not compulsory. There is no country in the world where somebody says, "Okay, you are going to die. You have to die by assisted dying." There is no country in the world. It is a voluntary decision, and that is the way it should always stay.

We are the legislators. We write the laws that will govern any future legislation, and that needs to be robust with safeguards and relatively strict criteria for those who can avail of assisted dying. I will believe that will happen. There is a momentum among the Irish public and in this House on the need to legislate around assisted dying and the need to deal with all the other deficiencies around palliative care and so forth. We need to do that. Obviously, there are people, including the witnesses, who, even if all those situations were in place, would still be opposed to it, and I respect that.

However, this question comes down to the person. The most important voice in all of this debate is the person who may find themselves in the situation where they may want to avail of assisted dying. That is the most import voice in that situation, not me, Ronan, Michael or anybody. In that set of circumstances, a person should have a choice. In order to have that choice, we as legislators need to change the law. That is my point. With safeguards and robust legislation, that can happen and hopefully it will. I think many people are waiting for this to happen and hopefully it will happen very soon.

Senator Rónán Mullen

To some degree, I respectfully disagree with my friend Gino. I have a strong sense over the past couple of weeks from the testimony of some of those who work more carefully and closely with people in the area of mental health in terms of suicide prevention, our expert psychiatrists and our witnesses today as experts in end-of-life love and care, that there is a real sense that what are proposed as safeguards in theory do not, may not and will not work out as safeguards in practice. I still have the memory of the way in which it was described I think by Dr. Eric Kelleher last week. It is impossible to say that people with mental health challenges will not be caught up in all of this, even if it is not on paper. We have heard about the increasing number of people even in Oregon, which has a conservative law, where feeling a burden to your family and loved ones is an issue of concern – more than 53% I think last year. That is helping us realise that this is not just about an individual’s choice rather it is a choice that actually renders other people vulnerable. That is the common good question and that is the challenge we have. How can we respect people’s autonomy as much as is humanly possible while recognising that there are moments where if you do that, you will hurt other innocent people? That is why it is so important and I agree with Gino in that we must do something, to use his words.

I think the witnesses will be glad to hear that when we were agreeing our terms of reference, we discussed carefully the wording “and other relevant recommendations”. I think where this committee will find agreement is around the need to strengthen a provision for high-quality palliative care and high-quality emotional, physical, psychosocial, spiritual support, not just for those who are dying but those who are living with life-limiting situations. The fact that we do not have that optimum situation in Ireland is another reason we cannot say that the autonomy is possible for people even if all other things are equal. How can people be free when they do not have the supports they need?

I wish to ask one thing and I see a couple witnesses are about to say something anyway. I had a personal experience of a loved one who died a few years ago and I was very involved in his end-of-life care although I was abroad at the time. In the end, breathing was a major issue and there was much discomfort and it was known that he was going to have sedation – I think it is called palliative sedation. Because it was known that was going to happen and he might not return to consciousness, decisions were taken. These were important decisions about important conversations he wanted to have. In a way, it is a world different from the decision of “I will have my life ended right now”. Yet, in another way, it seemed to be similar in the sense that I would imagine in the case of assisted suicide and euthanasia, there will also be a loss of consciousness at a certain point. How do the witnesses see both the distinctions and similarities between what I might erroneously be calling “palliative sedation” and what others seek to have enshrined in law, namely, that some people may actually require that their death be brought about?

Dr. Miriam Colleran

When people get closer to dying, and Senator Seery Kearney mentioned the wonderful work of Dr. Kathryn Mannix, even though they may be dying of different illnesses, there is much similarity at the very end of life of what people experience, assuming they are not having sudden death. There are signs that we notice such as someone over time being less active, being less able to do things, needing to rest and sit more and being less mobile. There are certainly changes, depending on the different condition or illness a person has but there are many similarities and overlaps. When getting very close to dying, people can be much more tired and sleepy. My dad actually was awake as he died. He died in ICU but he was awake, although he could not speak. Regarding the Senator's question about consciousness, he was post-extubation but he was still awake as he died. Therefore, these things are not universal.

What happens frequently when people are dying and when we see people dying at home or with us in the hospice or hospitals is that they can often be much sleepier, go in and out of unconsciousness and then become fully unconscious. Sometimes people get a bit anxious as they get closer to dying. Sometimes people tell me they are worried about dying. I say this anecdotally. I will say, “I know this sounds like a strange question but what is it about dying that has you worried?” For the vast majority of people, it is the idea of leaving their families and the people they love. That makes so much sense. We all grieve the loss of someone we love. I am sure all of us have been bereaved. We all grieve the loss of someone we love. Sadly, grief is part of loving someone. We do not grieve as much what we did not love and what was not as important. Sometimes people get understandably anxious as they get closer to dying and need some relaxation medication. Our aim in giving that medication is just for their comfort and to ease the anxiety. However, very rarely, people are very anxious and need medication to help them sleep through the process as they get close to dying. That is very different from deliberately hastening a person’s death. By and large, we can achieve very good symptom control for people who are close to dying.

(Interruptions).

Professor Susan O'Reilly

I do not want to interrupt. I wish to focus on a second element of the Senator’s comments relating to the gaps that might exist in care. Ireland has good consultant palliative care but there are some gaps in the midlands and in the north east in particular, which are being addressed. The consultant palliative care that is provided in the acute hospitals and hospices is excellent. In addition, there is a new palliative care report, which has not been issued yet, that we strongly endorse should be implemented. We are also aware that in the community, there is a recent €240 million being invested through the Department of Health and the HSE in enhanced community networks. These are usually GP led but they provide a level of care for seniors and people with chronic diseases, and they are capable of providing an element of primary and community palliative care.

We must put that front and centre because nearly three quarters of people would like to die at home but only 23% of people do so for a variety of reasons. It may be symptoms but it could also be that families are not able to support them or they do not have access to the 24-7 coverage they would like to have for either an urgent GP visit or possibly 24-7 access to pain medications that people might want. There are good efforts going on already to try to address this. I have some statistics that I will not necessarily go through in the interest of time but these enhanced networks are rolling out across the country. I endorse that and the home help component of this as well, where often recruitment of staff, training and maintenance is more of a challenge than actually finding the money to do it in order to give people the care packages they need to stay at home.

It is important that to consider, as committee members look at the recommendations, where they need to put their emphasis. We in the Irish Hospice Foundation believe that everybody deserves a good death. They deserve access to equitable resources across the country. Palliative care is crucial and patients can avail of this. Whether or not this committee rules in favour of proposing legislation, we would hope that would be an option to add on and not replace palliative care.

It should never do that. I certainly feel reasonably optimistic, based on experiences elsewhere, that investment in palliative care will continue to grow and not be reduced as a consequence of any potential future legislation. That remains uncertain, but it is important that not only are there supports in the community and in palliative care, but that there are supports for patients so they feel they will be treated with dignity, listened to and talked to. We have a think ahead package, which assists people to understand how to have a dialogue with professionals and their families. There is the Act that empowers people to make an advanced care directive can help them as they go forward into the future.

Deputy Danny Healy-Rae

One size does not fit all. Whatever laws we make, we should not try to interfere with nature or natural law. We did not determine when or how we got here. No law should be made in the land that would decide at what point we exit it.

I will give a few examples. All of you have similar ones. About ten years ago, there was a lovely lady and the story was bad. She was going to die in the next week or so and Jackie Healy-Rae received a request to get the hedges cut up to her door. She lived seven more years after that. She lived to see her daughter get married and other important events in her life. She had a great quality of life. She did not appear to be sick at all, although at that time she was not supposed to last more than a week or ten days. She lived more than seven years. Then we hear about people who got the all clear yesterday or last week whose names appear in the death notices and we wonder what happened. We cannot supersede natural law or the law of nature.

We fought against abortion. When a baby is conceived, it has a right to come into the world. People have a right to decide for themselves in the same way, when they want to live. As I said earlier, our attitude changes as we get sicker. We hope we will get better and that this is not the time we will depart the world. No law should interfere with or pre-empt nature. Some other force - I call it God - decides when we come and go and we should not try to change that.

One other thing has to be considered. If a law is brought in and a person is sick, will family members have a role to play? While most families love their parents and want them to last to the bitter end, there are a few bad eggs in every pack that would want to hasten their departure. I worry about that. I do not want this law brought in. I am worried about it. My focus is to try to ensure everyone stays alive as long as they can, to assist them while they are alive and not to assist them to go by bringing forward this Bill. I apologise to Deputy Gino Kenny. That is my position.

An Cathaoirleach

Like Matt Cooper, Ms O'Reilly will have the last word.

Ms Paula O'Reilly

Everyone today has spoken about the loss or death of someone and the grief it causes. We have talked about palliative care and the supports around that, but not the impact it has on others as regards bereavement. The process of grief does not start when a person dies. It starts when someone gets a terminal illness. The considerations of the committee, which has an incredibly difficult and complex issue to tackle, should include the wider community and how we support the people who are going on the end-of-life journey with someone, ensuring bereavement supports are available, such as supports for family carers and the wider community. We talk a lot about being a compassionate community so we need to look at what that looks like and how we can join the dots in the recommendations to the committee to ensure it is not only about the person's end of life, but also the wider family and community.

An Cathaoirleach

On behalf of the secretariat and members, I thank Dr. Hannah Linane and Dr. Una Molloy from the Irish Association of Palliative Care; Ms Paula O'Reilly and Professor Susan O'Reilly, from the Irish Hospice Foundation; and Dr. Miriam Colleran and Ms Emer Maguire, from Hope Ireland who all do excellent work. I note the care, kindness and consideration that is given by people who work in all the witnesses' fields when it comes to palliative care and dying. They touch people when they are at their most vulnerable and at the worst time in their lives, when they are saying goodbye and getting ready to say goodbye to a person they do not want to say goodbye to, who they want to hold onto for as long as possible. The witnesses make that passage much easier with their kindness. Let the message go out to the people who work in their organisations that we humbly thank them from the bottom of our hearts.

Again, I thank the witnesses for engaging with the committee today. They have given us a lot to think about it. Their expertise and knowledge is wanted by this committee and will inform our future deliberations.

The joint committee adjourned at 12.57 p.m. until 10.30 a.m. on Tuesday, 28 November 2023.