Joint Committee on Assisted Dying debate -
Tuesday, 17 Oct 2023

Healthcare Provision and Healthcare Professionals: Discussion

An Cathaoirleach

Apologies have been received from Senators Ruane, Hoey and Seery Kearney.

Parliamentary privilege is considered to apply to the utterances of members participating online in a committee meeting when their participation is from within the parliamentary precincts. There can be no assurances in relation to participation online from outside the parliamentary precincts and members should be mindful of this when contributing. This committee discusses dying, including suicide. Support information can be found on the committee's web page.

Our agenda item today is engagement on the topic of assisted dying, healthcare provision and healthcare professionals. I should say, before I welcome the witnesses and so nobody will think I am being unduly tough about time, that because of Dáil questions and the timing of the start of Dáil proceedings today we really have to be strict on time. The witnesses will know that their opening slot is five minutes. Members will have a certain amount of time and that includes the time for the responses. Please do not think I am being tough or anything; I just have to run the meeting very professionally to ensure we get through the business we need to within the timeframe allowed.

I very warmly welcome Dr. Feargal Twomey from the Royal College of Physicians of Ireland, RCPI, and Mr. Martin Varley, Dr. Gabrielle Colleran, Professor Robert Landers, Dr. Andrew Lyne and Dr. Brendan O'Shea. On behalf of the members and the secretariat, we appreciate your coming here so much. The level of importance of the witnesses and the engagement we have had to date is significant. What we are doing here is very serious work. The implications of it for people in the future is of enormous importance, so you being here is really welcomed by all of us. We really appreciate you and your expertise and we are very thankful for your being here.

I want to go first to Dr. Twomey to give his opening statement.

Dr. Feargal Twomey

Gabhaim buíochas le Cathaoirleach agus le baill chomhchoiste an Oireachtais seo as a gcuireadh a thabhairt dom teacht os a gcomhair chun cur leis an obair ollthábhachtach ar son Coláiste Ríoga Lianna na hÉireann. I thank the committee for the opportunity to appear before the committee today to help inform its important work. I am a nominee of the representation of the Royal College of Physicians of Ireland, RCPI, to present and discuss our position on assisted suicide. RCPI is Ireland's largest postgraduate medical training body and a professional body for medical doctors, with more than 11,000 members and fellows across 29 different medical specialties working in more than 90 countries. RCPI trains and supports doctors throughout their careers. You will meet our doctors in our hospitals and other healthcare settings. They are paediatricians, cardiologists, gastroenterologists and obstetricians, to name just a number of the specialties. We have many trainees and members working in palliative medicine, which is my personal area of practice.

RCPI opposes the introduction of legislation for assisted suicide because, in our view, it is contrary to best medical practice. It is our view that the potential harms outweigh the arguments that can be made in favour of legislation for assisted suicide. Second, RCPI promotes a considered and compassionate approach to caring for and proactively meeting needs, concerns and any sources of distress for patients who have a progressive or incurable illness and who may or may not be approaching the end of their natural life. Our college also promotes close adherence to the Irish Medical Council's current Guide to Professional Conduct and Ethics and the registered medical practitioners’ guidance on end-of-life care.

The college's position was adopted by its governing council in December 2017 following recommendations made by an internal expert group which was convened to consider the evidence and the arguments. This position was upheld, based on a further review of the evidence in the interim, in late 2020. These papers have been submitted to the committee and have been included again with this submission.

Every day, doctors like me, alongside GPs, nurses and all allied health and social care professionals deliver compassionate and expert care, including end-of-life care, in hospitals, hospices, GP practices and all other community and domestic settings throughout the country. These efforts are supported by patients but also by their families, friends and those they know and trust. We build relationships of trust over time. We listen closely and deeply to the fears, wishes and concerns of patients and their families and provide both general and, where it is required, specialist palliative care that closely aligns with those wishes.

There have been major advances in promoting high-quality care at the end of life across a spectrum of healthcare provision in Ireland, in particular, through the provision of palliative care services and increased training in palliative care and palliative medicine across the professions. Legislation for assisted suicide threatens to undermine these efforts, risking a shift away from funding, development and delivery of new and existing palliative care services and potentially reducing research in this area. It is important to consider the potential legislation in the context of unmet needs. There is a need for more and better palliative care resources, for example, a greater availability of psychiatric services and treatments. We must focus on meeting these needs. The impact of this legislation for assisted suicide in countries where it has been enacted is now captured in an evolving body of evidence that should, and I am sure does, inform this committee’s work. I understand the committee members will have heard of this from other people who have been before the committee.

Recent analysis of data from the Netherlands, Belgium and Colombia confirms a progressive broadening of the limits that have been initially established by law to the practice of assisted dying, both physician-assisted suicide and euthanasia in these countries. This is also the case in Canada, where safeguards that had supposedly been in place have been systemically eroded over the past nine years. In the Netherlands, there has been an extension of the eligible age groups, including new-born infants, as well as children of any age in Belgium. A recent report analysing the Oregon death with dignity Act since its enactment confirms that eligibility criteria have expanded since that Act was instated. The 15-day waiting period has been waived and patients receive assisted suicide or euthanasia even if they have non-terminal illnesses, such as arthritis, complications from a fall, hernia, stenosis and anorexia. In Switzerland, assisted suicide is a legal option for patients without any life-limiting illness or any evidence of unbearable suffering, and insufficient treatments are the only criteria.

A review, which was published only this month, found that between 2014 and 2018, the key criterion, namely, that end-of-life care is near, was met in only 44% of cases.

In some jurisdictions, access to assistance to end one's life is extended to those with psychiatric illnesses. In the Netherlands, they cite many challenges in accessing assessment for irremediable psychiatric suffering, IPS.

An Cathaoirleach

I thank Dr. Twomey for keeping within his time. I call Professor Landers.

Professor Robert Landers

I thank the Cathaoirleach and his committee colleagues for this opportunity to contribute to the committee's considerations in relation to the statutory right to assist a person to end their life or assisted dying. We in the Irish Hospital Consultants Association, IHCA, bring the perspective of healthcare professionals. As healthcare professionals, we are entrusted with the profound responsibility of preserving life, but we also witness the pain and suffering that some patients endure. Hence, we also have a responsibility to enhance and optimise our patients' quality of life. These realities make the subject of assisted dying an intricate one for us, just as it does for so many other people.

The debate on assisted dying raises complex medical, ethical, legal and practical questions that deeply affect our role in patient care. It is therefore not surprising that, just like society as a whole, there is a diversity of views and opinions within the association on the issue of assisted dying. The issue is informed by the lived experiences of consultants, particularly from those caring for the elderly and for persons with progressive incurable illnesses, mental health, addiction, cancer care and pain, among other specialties.

The standpoints will vary. For some, assisted dying offers compassionate relief for those who often experience intractable pain and terminal illness. These can be profound medical situations where we medical professionals are engaged in multiple efforts to cure or alleviate pain. There are times when every effort reaches its limitations. Some will conclude that assisted dying provides a humane means to reduce suffering and offer a degree of control in the face of that suffering. Such realities also confront us with the opposite, equally valid perspective. Much of this is informed by the challenges that are faced every day in the delivery of healthcare services. The challenge of timely access for patients to comprehensive healthcare and social care supports, including pain and symptom control and home supports, is considerable. Today, many patients do not have sufficient access to these services.

From medical professionals, ethics, quality, patient safety and risk in healthcare matter. We see the importance of this every day, as do the members of the committee as public representatives. Ethical considerations must always be paramount in health. The ethical dilemma posed by intentionally ending the life of a patient could hardly be more profound. It challenges our fundamental commitment to preserving life and could potentially erode the trust that patients place in our care. We may find ourselves in a difficult position when asked to assist in a patient's death, straining the doctor-patient relationship to the ultimate limit. Doctors are required to act in the best interests of patients in their care and avoid causing any injury or harm. Section 46.9 of the Irish Medical Council's Guide to Professional Conduct and Ethics explicitly forbids doctors from participating in the deliberate killing of a patient.

Equally, quality, patient safety and risk are essential considerations in healthcare provision. All developments in healthcare are considered in the context of balancing potential risks and benefits. One of the risks of the introduction of any form of assisted dying is the inappropriate death of a person. As we all know, death is irreversible, hence our keenness to contribute to this important and far-reaching discussion. No two patients are the same. Rarely are two medical circumstances the same. Against the backdrop of this reality, the committee members as legislators are informing themselves not just on the merits of legislating for assisted dying but on what factors must feature in reaching any recommendations or conclusions.

Crafting effective safeguards to protect patients and medical practitioners alike, if legislation or policy were to change on this issue, is a central consideration, not least because of the range of potential circumstances. However, the international evidence shows that safeguards in and of themselves may be challenged, altered and sometimes removed. Another consideration is protecting vulnerable patients who may be placed at risk of coercion to end their lives to relieve the burden they perceive is placed on their families, health services or society at large.

A major issue the committee will need to consider in full is safeguards, both for patients and medical professionals; for example, the matter of a cooling-off period after a declaration of assisted dying and a requirement for the patient to be formally advised - in a fashion that is witnessed and recorded - of their right to withdraw from the process at any stage. How would it work? What would it mean for medical professionals? These questions also arise when it comes to oversight, scrutiny or investigation of the process by which declarations are made and applied, as would consideration of this to an independent process to protect patients’ rights. We also must be mindful of freedom of conscience provisions. How would this work in practice and implementation?

Defining the clarity of the definition of "assisted dying" is important. Does it refer to self-administered medication or medication administered by another person? As signalled, rigorous operational guidelines on the eligibility criteria and ensuring informed consent are central considerations. Striking a balance between respecting patient autonomy and safeguarding persons who may be vulnerable is a substantial challenge here.

As is always the case with healthcare, we must consider the issue of resources, both for patients who may wish to choose end of life and for patients who do not wish to end their lives early but feel that they have inadequate supports to enable them to live as they wish. We know internationally that one of the main reasons patients choose assisted dying is a fear of being a burden on others. The severe resource and capacity deficits that exist in our health services may serve to further disadvantage patients suffering from life-limiting or terminal illness and lead them to consider assisted dying and other end-of-life options that could otherwise be avoided with appropriately funded palliative care.

In conclusion, as medical professionals, the debate on assisted dying directly impacts what we do. We see the matter from all sides: compassion, suffering, ethical, medical, legal and practical. In short, this complexity requires thorough examination, consultation with healthcare experts and others, careful consideration and a deep respect for the values that guide our medical profession. To this end, this committee, and all contributions to it, are to be commended and respected. As we navigate this complex terrain, our involvement as medical professionals is pivotal in ensuring that the conversation remains focused on the best interests and well-being of the patients we serve.

Dr. Andrew Lyne

I thank the committee for the opportunity to make this submission on behalf of Irish Doctors supporting Medical Assistance in Dying. We represent more than 100 registered medical doctors in Ireland. We believe that voluntary assisted dying is about offering terminally ill patients a choice at the end of their lives.

Medical paternalism, where doctors assume what is in the patient’s best interest, is no longer acceptable. Patients’ choices should be respected and supported where reasonable, with decision-making shared between doctor and patient.

As a society we have empowered individuals through referenda to take control and responsibility of their personal lives. Ireland is now a progressive, caring and compassionate society that respects individual’s rights. Repeated opinion polls in Ireland show that society understands that assisted dying may be a reasonable choice for those with terminal illness. Assisted dying continues to have widespread support among the public in the various jurisdictions where it has been introduced. Public support for assisted dying in Australia is at 78% and at 83% in the state of Victoria, where it has been available for more than six years.

Increasingly, various medical bodies have recognised that there are diverse opinions among doctors on assisted dying and that it is a societal issue rather than a medical one. In the UK, following consultation with its members, the Royal College of Physicians, the Royal College of Surgeons and the British Medical Association have all adopted a neutral stance on assisted dying. In Ireland, the Irish College of General Practitioners, ICGP, has also adopted a neutral stance.

Concern for vulnerable groups is shared by all doctors here today. Studies on assisted dying have repeatedly shown that vulnerable groups are not over-represented in those who choose assisted dying. In fact, people who choose assisted dying tend to have higher incomes, are younger and are more likely to be married and to be living at home.

Palliative care can control and alleviate the symptoms of many patients but it cannot eliminate all pain and suffering for all patients. Other symptoms, including shortness of breath, vomiting and unremitting itch, can be difficult to control. When the symptoms are overwhelming, terminal sedation, where the patient is rendered unconscious, may be used. Terminal sedation is very important to avoid patient distress and suffering but we should also recognise that it strips the patient of all autonomy. They are unconscious and unable to contribute to any decisions in their care.

When we look at the international experience, pain is not the most common motivation for people to request voluntary assisted dying. Loss of being able to live in a meaningful way and loss of ability to perform activities of daily living, such as being able to go to the toilet independently, underlie more than 80% of requests. It is understandable that an individual may choose to end their suffering when they lose their ability to function, there is no prospect of improvement and death is foreseeable.

Many patients with distressing symptoms and incapacity at the end of a terminal illness may never wish for voluntary assisted dying and it is right that their choice of palliative care is well resourced. Other patients will not want to endure the suffering that can occur at the end of a terminal illness and would like to have the choice of voluntary assisted dying.

I turn to my colleague, Dr. O'Shea, for the next part.

Dr. Brendan O'Shea

Our group has considered why voluntary assisted dying should be introduced in Ireland, which was addressed by Dr. Lyne. I will move on to how voluntary assisted dying could operate in Ireland, bearing in mind that this session is particularly related to healthcare provision and healthcare professionals. Having engaged closely with the experience of others, including our own colleagues abroad, and the evidence from a number of different health systems where this has been introduced, we have been influenced by the experience in other healthcare systems.

We recommend legislating initially for a conservative approach with continual audit of real-time data and robust review at two years, reporting at no later than two years and six months. We are confident this can be administered and carried out in this manner.

With respect to qualifying criteria, we recommend it should be restricted to adults aged 18 years or older resident in Ireland who evidently have a progressive, incurable, terminal physical illness and a prognosis of less than six than six months or, in cases of advanced terminal illness, those causing progressive physical deterioration. The patient must be able to consent to accessing voluntary assisted dying both at the time of the initial request and at the time when assisted dying might occur as part of service provision.

The initial application should be required to be assessed by two independent healthcare professionals with a training and background in this aspect of healthcare provision. We recommend excluding mental illness and dementia as primary qualifying conditions.

Regarding service provision, we recommend, again with respect to the experience in other health systems, a reflection period of two weeks, with discretion to reduce this to five days in cases where there is significant active poor control of symptoms and evident suffering.

Voluntary assisted dying can be provided either through a choice of self-administered oral medication or through a healthcare professional-administered parenteral or intravenous medication.

With respect to implementation, we recommend the formation of two key groups: the formation of an implementation group that might work over a six- or nine-month period and the formation of a service provision panel, which would be involved in the actual administration of medical assistance in dying. The implementation group should comprise invitees or nominees from some of our fantastic NGOs, perhaps including the Irish Cancer Society, the Irish Hospice Foundation, the Alzheimer Society of Ireland or End of Life Ireland. It should also include involvement from the post-graduate medical training bodies, including the ICGP. In other health systems where this has been introduced, we understand that generally family physicians are closely involved, partly because of our role in delivering continuous care and our presence at the onset of diagnosis right through to dying, death, bereavement and beyond. The HSE should have an involvement in the implementation group, as well as the Irish Medical Organisation, IMO, the Decision Support Service, the IHCA and national general practice information technology, GPIT group. GPIT is particularly important to ensure this process is accurately mapped out and documented and that there is high-quality, relevant data to analyse how the service develops. The service provision panel should include groups of initial applicant assessors and service providers.

We would see service provision being delivered where people largely most want it to be, which is at home, in nursing homes, in the acute hospital setting and beyond. We need to draw on the experience from termination of pregnancy so that the thoughts, values and beliefs of conscientious providers and conscientious objectors are both adequately reflected in how the service is established and set up.

Having considered it closely, this service can be set up successfully and effectively, with absolute respect to the ethical sensitivities required. The service can be delivered well and reflects an evident need for a significant proportion of people who are dying in Ireland.

An Cathaoirleach

I thank Dr. O'Shea. Senator Mullen is first.

Senator Rónán Mullen

Gabhaim míle maith ag an gCathaoirleach agus cuirim fáilte roimh na h-aíonna uilig. I apologise in advance that I will have to leave fairly early after my questioning because we are launching the Oireachtas essay competition for senior cycle schools today. If the witnesses know anyone who might want to enter that, we would be delighted to hear from them.

Beidh idir Bhéarla agus Ghaeilge sna ceisteanna agus beidh fáilte roimh Ghaeilge nó Béarla sna freagraí freisin. Is rud atá suntasach sa díospóireacht seo, de réir mar a fheicim, go bhfuil formhór na ndochtúirí agus eagraíochtaí na ndochtúirí in Éirinn in aghaidh an bháis chúnta a bheith ceadaithe. De réir cosúlachta, tá faitíos orthu gurb iad na daoine is leochailí sa tsochaí a bheadh thíos le haon athrú. Dá mbeadh duine le tinneas foirceanta, mar shampla, daoine le míchumas nó daoine atá sean, fiú amháin, agus go bhfuil ualach á chur orthu, ar a dteaghlaigh agus ar an Stát, tá sé an-deacair idirdhealú a dhéanamh idir an duine le tinneas foirceanta atá 100% i gceannas ar a ngnóthaí féin agus duine a mhothaíonn brú ón gclann, ón tsochaí nó ón Stát.

There is a real fear out there that people will feel vulnerable no matter how we try to legislate for the individual, who may be completely in charge of his or her own will and desires. There is a fear it is impossible to prevent that from seeping out societally so people who are old with severe physical or mental challenges, or who indeed are terminally ill, would not feel in some way drawn towards euthanasia or assisted suicide because of a new culture that emerges where they feel vulnerable and where they feel a burden. The fear is that no safeguards can stand strong against that over time, and that seems to be the experience internationally. Insofar as we have time, I would be grateful to hear from all groups in response to that concern, in whichever language they choose.

Dr. Lyne and Dr. O'Shea say they represent 100 doctors. What percentage of registered medical practitioners in Ireland would that be?

Dr. Andrew Lyne

That was in a submission on the Dying with Dignity Bill 2020 and they were all registered with the Irish Medical Council at that time.

Dr. Brendan O'Shea

To answer the Senator's particular question, I guesstimate there are probably about 16,000 people on the medical register, including people who are fully qualified specialists in their own disciplines, and trainees. At this point, therefore, it clearly represents a very small proportion, but I call back to termination of pregnancy where the number of registered medical practitioners actively supporting the introduction of that was a similar proportion, but ultimately these Houses and that previous committee did a job, responded to the expressed desires of the public and-----

Senator Rónán Mullen

Understood. The question was specific.

Dr. Brendan O'Shea

-----there were more than adequate practitioners to switch on the service as required by the HSE in January 2019.

Senator Rónán Mullen

Understood, but Dr. O'Shea is talking about fewer than 1% of the registered practitioners.

Dr. Brendan O'Shea

A lot less.

Senator Rónán Mullen

Of those 100 members, how many are full-time palliative care professionals?

Dr. Brendan O'Shea

In keeping with most health systems, the lead on this tends to be taken by family physicians, so our membership is made up of GPs or family physicians, with a small number of specialists.

Senator Rónán Mullen

Have any palliative care professionals signed up?

Dr. Brendan O'Shea

I cannot answer that, but in honesty, with respect to the Senator's question, if we do, it is a very tiny number indeed.

Senator Rónán Mullen

Would Dr. O'Shea accept the great majority - to the point we have hardly heard from any opposing voice - of those palliative care professionals, be they doctors or other healthcare professionals, are concerned about any change in that law?

Dr. Brendan O'Shea

I think all of us are concerned about any change in the law that relates to this as a matter of absolute importance. It is challenging, but we need to look at this as process. In every society where this has been introduced, there is clearly a pattern, which is that it especially tends to be driven by families and households where unrelieved end-of-life suffering and overmedicalisation at end of life is a real issue. Next up will tend to be family physicians and then, to a greater or lesser extent, the idea or concept gains traction in other speciality groups. During recent weeks for example, a hospice service in New Zealand clearly advocated to have medical assistance in dying as part of the hospice service, so there is a spectrum. This is the process and we are not surprised support from our membership predominantly reflects family practice.

Senator Rónán Mullen

Dr. O'Shea recommends there should be a prognosis of less than six months to live.

It is also proposed that the determination of that prognosis would be a matter for two GPs and there would not be a requirement for specialist advice. In the context of capacity to consent and a determination of there being less than six months to live, is this not something complex and, in effect, incapable of being measured within the regulatory regime Dr. O'Shea's organisation is prescribing whereby the say of only two GPs is required? Furthermore, if people refuse standard treatment and that potentially puts them in the category of having less than six months to live, would they then qualify under the proposed regime?

Dr. Brendan O'Shea

There are two really important issues here. We did not recommend the determination should be made by two GPs. We are recommending it be done by two healthcare professionals. As in other health systems where this is a well developed strand of service, we would absolutely welcome advanced nurse practitioners and community pharmacists having an involvement. It absolutely is not exclusive to general practice.

Senator Rónán Mullen

Would there be no requirement for specialism in mental health, for example, if there are mental health issues in the background?

Dr. Brendan O'Shea

We absolutely would see a role for colleagues in psychiatry if they have an interest and see themselves as conscientious providers, which is increasingly the case in other health systems. That would be welcome.

Senator Rónán Mullen

However, Dr. O'Shea is not saying it would be required.

Dr. Brendan O'Shea

We are saying it is highly desirable.

Senator Rónán Mullen

This is a life-and-death issue. The proposed safeguards, in essence, are a five-day waiting period and, in fairness, a stated wish to exclude people with mental health conditions. I note that Dr. O'Shea's organisation is named after the Canadian model of medical assistance in dying, which is, to say the least of it, controversial in terms of how it has become a runaway train. It seems to me that Dr. O'Shea's model would not exclude the Canadian-type conditions whereby people go into nursing homes and relatives might potentially find out they have died because they requested medical assistance in dying without their relatives even being contacted. Is that a fair characterisation of what could happen?

Dr. Andrew Lyne

May I respond?

An Cathaoirleach

Dr. Lyne may give a brief response.

Dr. Andrew Lyne

The Senator's concerns are regarding people who are in vulnerable situations. If we look at the international experience, people who are vulnerable are not overrepresented among those who choose assisted dying. The Canadian data show it is people in higher-income groups, people living at home, people who are married and slightly younger people who are more likely to choose assisted dying. Those are the facts of the matter. Vulnerable people are not disproportionately oversubscribing.

Deputy Emer Higgins

I thank the witnesses for being here with us today and for everything they, and all the doctors and physicians they work with, do for society day in, day out. This committee has been set a very tough challenge in a very tough timeframe. It is only because of expert witnesses that we are able to inform ourselves. We are all very aware that if we change the laws, and it is an "if" at this stage, the witnesses' profession will be the most impacted. We understand and respect that. It is why their testimony and participation today is so critically important.

I thank Dr. Twomey for sharing information on all the work the RCPI has done on this issue and the papers it has produced. There is no doubt it has done an absolutely huge amount of work on this. Setting up the expert group and reviewing it a number of years later really shows it has taken the issue very seriously for a number of years. It has done a huge amount of research and taken a very definitive stance on the issue. Dr. Twomey is representing the 11,000 members and fellows of the RCPI. What did the consultation involve? Was there a ballot of members before arriving at the official stance?

Dr. Feargal Twomey

There was not a ballot. In essence, the president of the college requested that a committee be set up to review the legislation at that time. Three years later, we undertook a further review of the literature and changes in practices in other parts of the world. The incoming president and the council of the RCPI are in the process of requesting a further review. A group will be co-ordinated that will listen to all our members in various disciplines and specialties through the mechanisms of the college as they exist. A further review will be undertaken.

Deputy Emer Higgins

That is super. Will Dr. Twomey keep us up to date on that? If a further review or further consultation with RCPI members is done, it would be really interesting for us to hear about it and have a wider lens on whether there are diverging views within the organisation. Professor Landers summed up the situation, in line with my layperson's interpretation, as that there would likely be very diverging and diverse views within the profession.

He eloquently summed up my own rambling thoughts on this complex issue and the concerns that exist around safeguards. Am I right in saying that his organisation has not taken a definitive stance?

Professor Robert Landers

The Deputy is right in that. We have not taken a definitive stance. We have not surveyed the membership. We formed a working group which I chaired and which had input from various specialties, including mental health professionals, palliative care physicians and physicians caring for the elderly. That informed our previous submission on this but we have not taken a stance or surveyed the membership in full.

Deputy Emer Higgins

This might not be a very fair question but would Professor Landers be confident or comfortable in saying that if the law did change, once conscientious objections were baked into it, members of his industry would be able to work within the new parameters of that new law, if one existed?

Professor Robert Landers

To be fair, it goes far beyond just conscientious objection as regards safeguards. There need to be extensive safeguards built into any legislation, if we were to introduce legislation.

Deputy Emer Higgins

That is understood and agreed with. I thank Dr. Lyne and Dr. O'Shea for their submission. It is a very small number of doctors they are here speaking on behalf of. I take on board Dr. O'Shea's point that that is how it started with the last big societal debate we had when it came to a healthcare issue around choice. I was particularly interested in what Dr. O'Shea put forward on how this would work if we went down this route. That is the very tricky bit for us as legislators to get our heads around because we would not have the practical experience that practitioners have. I love the idea of the implementation group and the service providers panel. On the qualifying criteria they have set out, could Dr. O'Shea or Dr. Lyne akin that to one of the international experiences? We have heard so much about international experiences. We have already had lots of testimony from other countries. Is there a particular country that this is based on or similar to?

Dr. Andrew Lyne

I might take that question. It is particularly similar to the Australia and New Zealand models. We were very careful when framing the criteria to include people with a terminal illness with advanced physical deterioration where they might not have an exact prognosis of six months were less. We are very mindful in that context of Marie Fleming because if you put in a very tight prognostic clause, many people who are suffering with a terminal illness would be excluded. We thought it was very important that we do not exclude people unnecessarily.

Dr. Brendan O'Shea

It is very difficult to be forensic in hindsight. We have really studied this and have engaged at a personal level with a number of different experts from abroad. We have read the huge amount of research from systems where this is available. We have presented the committee with a very brief summary in terms of how we see this, urging that there should be legislation to support it and it should be fundamentally conservative. As family doctors, another aspect of family medicine or general practice is that we frequently have particularly close long-term relationships with households and families. We have really learned to value what our patients and their families want, and in this instance particularly what the patient requires. We would be confident that if we shift the focus of power to the patient or individual, which resonates with the Assisted Decision-Making (Capacity) Act, we are likely to end up with a system that will not be perfect but will be very good.

Deputy Emer Higgins

On what Dr. O'Shea said there about it initially being conservative, we have heard so much in this committee about the slippery slope and people's concerns that we might start at a point but things might move. If we were to be conservative initially and legislated for this with a review in two years, how would Dr. O'Shea respond to members of the public who feel that all we are doing is setting ourselves up for a slippery slope?

Dr. Brendan O'Shea

It is to the credit of this committee that the words "slippery slope" did not enter into these proceedings until well over an hour into them. It is a term that really gets us wildly excited. We understand with this is likely to look like. In this country, in the order of 33,000 to 35,000 people die each year. We understand from other health systems that typically, this measure becomes of interest to about one in ten of all those people and of those for whom it becomes an interest or relevant, typically less than two or three will actually apply and proceed.

In this country the system required is likely to cater for about 1,000 to 1,500 people over the next three to four years as people become aware and it is embedded in the culture. We can call that a slippery slope if we want.

Deputy Emer Higgins

However, if the safeguards are changed it is different.

Deputy Alan Farrell

I thank the witnesses for appearing before the committee in what has been a really helpful session thus far. Deputy Higgins has covered many of the questions I have, but I will just focus on some points with two or possibly three of the witnesses. My first question is for Dr. Twomey. Deputy Higgins spoke about the information Dr. Twomey presented to the committee regarding the position of the RCPI having been adopted in 2017 and reaffirmed in 2020. Given the debate since then, does he think it is prudent for his organisation to revisit that decision? Would it be appropriate for the RCPI to ballot its members given the potential for legislation and, this is my personal opinion, the RCPI not having expressed any substantive views on any suggestions made on the form of any legislation that might occur? That may be a missed opportunity. On that basis, would it be appropriate for the RCPI to review its position and come back to us or at least to participate in the debate at a later stage substantively rather than expressing the position that it is opposed to it?

I thank Dr. O'Shea and his colleague for their extremely helpful outline. Like the previous speakers, I have grave concerns over the progression of this, the slippery slope. I really welcome the conservative approach they have outlined. It is important for the committee to hear that there are medical professionals in the State who have considered this substantively and have looked at countries such as Australia and New Zealand as was outlined. I particularly welcome the idea of an implementation group, should this matter come to pass. It is clearly essential for us to get to grips with what is a very tough question for the individuals, their families and, of course, their medical practitioners.

I start by asking Dr. Twomey about revisiting the decision that was previously made. This may be an opportunity for him to express his opinion on what he has heard from his colleagues on the panel and what, if any, contribution he may wish to make to support or dispel some of the remarks they have made.

Dr. Feargal Twomey

I do not want to repeat too much of an answer I gave a while ago. The Royal College of Physicians in Ireland is in the process of bringing together a committee representative of the college to revisit this question and to review the current literature in the current national and international environment. It will be a substantive response on behalf of the college. It would be the college's intention to publish that on our website. I will speak with the incoming president of the college, but I do not foresee there being any issue with it being shared with this committee to aid it in its work.

Deputy Alan Farrell

That would be very helpful. Just to be precise, would the RCPI ballot its members? Would it ask them the question?

Dr. Feargal Twomey

At the minute, the standard mechanism in the college to engage with the deans of the various institutes within the college will be followed. At this moment in time, a vote or a ballot is not proposed. However, the terms and conditions of the review have yet to be fully completed and defined.

Deputy Alan Farrell

Maybe I have framed it in such a way as to make it mildly objectionable. Perhaps a survey would be a more appropriate word to use, just to give us an indication. I think it would be helpful. At the end of the day, from an educational perspective, the RCPI is one of the bodies which will be training the physicians of the future and therefore its view is important to us.

Dr. Feargal Twomey

Yes indeed. Once the substantive view of the college has been agreed, whatever view it comes to, we will be happy to share it with the committee.

In terms of my own view, I work in palliative care and I am a doctor in palliative medicine. We are in the no suffering business. Our duty in care is to look after lots of people who are living, and enable them to live as well as they can. I have worked on the definitions for the glossary of terms of palliative care in Ireland. Terminal illness is when you will be dying in the coming hours or days. We see an awful lot of people with incurable illness. We listen to them and their various needs. At Deputy Farrell's invitation I will respond to some comments made by other people present. In any jurisdiction where this has started, it began as a conservative approach. I counsel members of the committee that in the time since the first Private Members' Bill on this issue was tabled in the Houses of the Oireachtas the systematic erosion of safeguards and protections and the relaxation of restrictions in Canada have been quite frightening. I understand the committee may have heard from colleagues in Canada earlier today. I am also concerned about one of the erosions in Oregon in the US and in Canada, where you do not need to have a long-standing relationship with a physician for your physician to be involved in the discussions. In fact, you can fly in from out of state, and in five days meet two doctors you have never met before and in certain circumstances have your life ended, or receive assistance to end it yourself. That erosion of safeguards is challenging.

From personal experience in my day to day work and listening to colleagues, I would say that in Ireland we are excellent at the after death bit. When people die, we are very good at gathering around and supporting. I was at a conference last Friday, and there was incredulity that so many Irish people have rip.ie as their homepage. For many people of a certain generation, it is the first thing they look at. I suggest, without casting any aspersions, that Members of the Oireachtas have at least one team member making sure they are not missing any deaths that have happened in their constituencies, and which they should attend. What we are atrocious at in Ireland is recognising that dying is a normal part of living. We are really poor at recognising that there are limitations to the treatments you can have. We are also poor at recognising that there are limitations to the expectations we can have of that treatment. Much of the fear of dying, the pain of dying or of the pharyngeal secretions and death rattle come from a fear of them happening. They are much less relevant to the actuality of those occurring. In my specialty and in particular in the hospice where I work I see some of the most complex dying happening in our region. Even in that subset of people with advanced illness who are dying, and who may or not be more likely to be in a hospice setting when in a lot of trouble, the incidence of severe distress of any kind is quite small and sustained. I met a lady yesterday in the emergency department of University Hospital Limerick. She was distressed because she is going to die in the coming five days. She has five children under the age of 11. She wants to live as long as she can, but she is not going to be afforded that. I met a person in the hospital last week who spoke about going to Amsterdam for assisted suicide. It was based on a recurrence of her illness, the fact that her son has had the same illness and another son has died from the same illness. She was able to tell me about her distress at the fear of recurrence of the symptoms of previous treatment and the recurrence of a death in the family from a similar diagnosis. Her treating doctor and I were able ask her what her main distress and worry was, and how we could best address it. Luckily for her, this lady has a supportive family around her, and has further options for treatment. However, when I met her the only thing she wanted to ask me was how to get to Amsterdam so she could have her life ended.

Senator Fiona O'Loughlin

I thank all the witnesses for continuing this difficult and very complex conversation. There is a huge weight of responsibility on us, as members, in listening, learning and balancing all the information. Outside of the ethical and legal areas, the lived experience of those who, sadly, are dying, family members and doctors is really important. The latter are at the coalface in witnessing people's suffering and vulnerability when they are very ill and contemplating matters such as this.

As regards the questions I will put, it is interesting and good that we have different views as well as a view in the middle, so to speak. I might start with Dr. Twomey. He mentioned the mum in Limerick and the very difficult situation there. Having had a family member go through all this, I can say that the sensation is awful. I remember saying at the time that time is your enemy and your friend because every extra minute you have with the person is worth a lot but, equally, every minute brings you closer and closer to the inevitability. Seeing somebody dying in pain and great indignity is hugely difficult for the person involved and for his or her loved ones. Dr. Twomey mentioned that particular lady. Are there any circumstances whatsoever in which he would consider that assisted dying would or could be used?

Dr. Feargal Twomey

I will answer the question in a slightly different way. Each person's experience is his or her own, and each family member's recall of a family member's experience is his or her own. The so-called bad deaths or the distressed deaths often occur when someone actually is not able to accept his or her diagnosis or is not able to accept that treatment is no longer available to him or her. When I meet somebody like that lady or, in fact, anybody I meet, I see my role genuinely as trying to help them. I sometimes ask, "Can I join your team to help you?" My role is to see if I can get them as physically comfortable as possible, whether it is pain or other symptoms. Oftentimes, in fact, suffering in advanced illness has nothing to do with pain or symptoms at all; it is to do with the loss you will have, the family events you will not attend, the questions, "Have I lived enough?", "Have I loved enough?", "Have I let enough go?" Palliative care is everybody's business; it is not just what I do. Everyone in healthcare work does palliative care work. We should truly and meaningfully listen to what causes people the most distress. I ask people, "What matters most to you today?" I ask them, "What are you most worried about?" Most people are able to voice that, but even in my practice again this week I have seen a man with terribly unrealistic expectations that have been created by another healthcare professional. That man is a member of society who is petrified of the idea of dying. We try to repair that.

I will repeat what I said earlier. In my experience, severe, unremitting distress, be it from a physical symptom, including pain, or from psychological or social distress, is extremely rare. If it is present and someone is very close to the end of his or her natural life, we are able to manage that.

Senator Fiona O'Loughlin

I thank Dr. Twomey. If I may turn to Dr. O'Shea and Dr. Lyne, I know Dr. O'Shea to be a very compassionate and understanding GP in my town of Newbridge.

One of the areas Dr. Twomey touched on, and which we all agree on, is the importance of palliative care. He mentioned a concern that less resources might go to palliative care if assisted dying were to come in.

I am interested in a response to that. While we have a lot to go through in this committee, if recommendations were made and assisted dying introduced in Ireland, how long would it take to establish service provision? We also mentioned the slippery slope. How would such a service be effectively audited in a way that would allay concerns? I appreciate the practicalities in the witnesses' statement. From what we have heard so far the doctors see it operating in a similar way to the Oregon model.

Dr. Andrew Lyne

Dr. O'Shea and I, as part of our roles as general practitioners, also practise palliative care. Over the years, it has been a great privilege to bring comfort to people at the end of a terminal illness. However, my experience is sometimes that does not happen. Sometimes, the end of life is not comfortable. It can be distressing. All of us here have been to funerals. Rip.ie has already been mentioned. We have often heard people say it is an ease to them. Their suffering is over; and they are at peace now. Dying is a normal part of life, but the idea that palliative care can make it comfortable all of the time is simply not true in my experience. Part of the reason I have been motivated to come here is I have had experience with patients who, despite getting the best palliative care available to them, and it was good, had distressing symptoms. Those individuals have asked me if I would help them to die. I was a bit ashamed. They had distressing physical symptoms and great support from their families, but if I were in their situation, I could absolutely empathise with what they wanted. However, I was prohibited by the law of the land from giving the patient what the patient themselves wanted. I simply think that is wrong.

Deputy Pa Daly

Gabhaim buíochas leis na finnéithe go léir as ucht freastal ar an gcruinniú. Tá cúpla ceist agam ar dtús. Labhair an tOllamh Landers mar gheall ar na dúshláin atá againn le cúram maolaitheach le sláinte mheabhrach agus daoine atá faoi mhíchumas. Dúirt sé go bhfuil ar an HSE 70 duine breise a lorg i gcúram maolaitheach. A lot of the challenges faced by the healthcare system were mentioned. We need an extra 70 consultants in palliative care alone over the next five or six years. A few weeks ago we spoke to witnesses from Dignitas. Dúirt siad nach raibh siad ag iarraidh bás a fháil ach nár mhaith leo maireachtáil sa tslí seo. Most of the people who go to Switzerland do not want to die, but they do not want to live like this. What do the witnesses think the challenges are? Are we ready to enter a system of assisted dying, given what the witnesses say are the severe resource and capacity deficits in the healthcare system?

Professor Robert Landers

What we were doing as an association is outlining the limitations of current capacity and resources within the health system. We are outlining the risk that people may choose assisted dying because of a lack of capacity or resource elsewhere in the health service. If we are that short of palliative care consultants, and we know we are short of mental health professionals, physicians for the elderly, diagnostic physicians, hospital beds and beds in the community, we do not want people taking what could be an inappropriate option because of a lack of proper resources elsewhere in the system.

Dr. Gabrielle Colleran

The association has 3,500 consultants and there are varied views on this. Probably similarly to the committee, people have strong views either way and many of us in the middle are struggling with the nuance of the debate.

A risk that has been raised in terms of our geriatricians relates to the current budget and the moratorium on home help. That creates a difficulty for vulnerable people in our society who have dependence on others. I do not know if members have looked at the report of the ethics committee to the Danish Parliament, which has recommended against legislation on assisted dying. One of the reasons given was that if it becomes an option, there is a risk it becomes an expectation aimed at special groups in society. Representing consultants across geriatrics and palliative care, we feel there is an onus on the State to ensure every person with mental illness has access to psychiatry and every person with oncology issues or late-stage cardiac disease has all the social supports for good living. Exactly as the people from Dignitas said, many people do not want to die but do not want to suffer. They want to live well. Some of our members have grave concerns while others have other opinions. One thing that is consistently raised is the concern that if those supports are not available, people will be pushed into taking that option. In Oregon, 46% of those who opt for assisted death say part of it is feeling a burden to others. In a country with a housing crisis and a lack of access, that is a big issue, as it is for the committee when it considers legislating. Where is our system in terms of supporting people?

Dr. Lyne made the very valid point that when you start out with assisted dying, it is people like him and me who are well educated who have access to it, and autonomy is really important to us. However, the analysis of Oregon showed 65% had private health insurance 25 years ago while 79% are on Medicaid now. Half of them say they feel a burden to society. It is a complex, nuanced issue. We have had many heated discussions. Members might not be able to tell but there are differing opinions between the three of us. Those are issues for the committee. It is a challenging issue to legislate for. We do not envy the committee.

Dr. Brendan O'Shea

The issue of resources is important, and in general practice we frequently see how inequality plays out depending on the resources an individual has. Dr. Lyne observed that in systems where this service is available, among the earliest takers and significant users of the service are particularly affluent people. To translate that to Ireland, that means people with private health insurance, where there are far lesser strictures on service provision. Affluent, educated people act on this and see this as a service relevant to them. That is an important point but probably should not be the most important point, which should be based on the existential need of a small proportion of people for whom this is an important choice at end of life. As doctors, we have all observed deaths we would not like for ourselves and that have worked out really wrong.

Deputy Pa Daly

That tallies with the Dutch people who came in and said in more affluent areas there was a higher rate.

Dr. Feargal Twomey

Patient autonomy and choice are important but cannot be absolute. As Dr. Lyne said, patient choice should be supported where reasonable. There needs to be joint decision-making between a patient and his or her healthcare team, which often but not always includes a doctor. An analogy I give is if I am in an aeroplane flying somewhere, when the seatbelt sign goes off I cannot go up and open the front door of the plane because I want to. That is because of the risk of harm to others. My concern about the inability for safeguards to be maintained leads me to say the only true safeguard is that the law does not change, which is an option for this committee to decide upon.

Deputy Pa Daly

Mar gheall ar an gcúram maolaitheach, an bhfuil a lán difríochtaí idir na contaetha sa Stát seo? As regards palliative care, I am used to dealing with the one in Kerry, which is an excellent system. A lot of money has been put in privately as well. They have a good system there.

Are there many differences in the levels of palliative care received in different parts of the State? It is not necessary to say which is particularly good or bad.

Dr. Feargal Twomey

I also have the role of clinical lead for palliative care between the RCPI and the HSE, so I have the ability to answer that question reasonably knowledgeably. The answer to the Deputy's question is that there are differences in the levels of palliative care, but there have been significant developments. There are now 14 inpatient units around the country and three more will open in the years to come. There are differences, however, in practice in, for example, County Kildare, where Dr. O'Shea practises, and in County Kerry, where the Deputy works in his constituency. Excellent work is done in County Kerry by those providing palliative care and they need more support. This is something we are trying to find for them.

Practice differ, however, and the onset of Covid-19 and difficulties with staffing have meant that people have not been able to deliver as much as they could. Fundamentally, we need more resources across healthcare. This comes back to the expectations and willingness of patients and individuals. We are petrified of dying, and this means we do not talk to our family practitioner about our concerns about death and dying until it is quite late. We do not access palliative care, whether delivered by a geriatrician, a GP, a paediatrician or a general physician of any kind, let alone specialist palliative care. The thing is that, as a society, we are so frightened of dying that we will not discuss it.

An Cathaoirleach

I thank Dr. Twomey. I call Deputy Troy.

Deputy Robert Troy

I thank all our guests who are with us. People have spoken about introducing a model that is extremely conservative and with robust safeguards. We all detest the saying about the slippery slope, but the fear is that no matter what we introduce today, those provisions will be broadened at some stage in future. If we look at where assisted dying has been introduced, this would lead us to believe that this fear is legitimate. Do the witnesses have an example of any jurisdiction where an extremely restrictive model was introduced and it is still the same a decade later? I refer to there having been no broadening of what was available after one decade of operation. I ask the witnesses to address this query.

The other point made was that the Irish Doctors Supporting Medical Assistance in Dying group represents a membership of about 100. Is it free for any medical practitioner to join the organisation? I presume its members are also members of the RCPI.

Dr. Brendan O'Shea

A few are. We are mainly members of the Irish College of General Practitioners, ICGP.

Deputy Robert Troy

Okay. Is it the case that nothing prevents people from being members of both organisations?

Dr. Brendan O'Shea

Absolutely. People must pass a set of examinations to secure membership of the ICGP and the RCPI.

Deputy Robert Troy

I am trying to ascertain where the Irish Doctors Supporting Medical Assistance in Dying group got its membership from. Was it from a recruitment drive?

Dr. Brendan O'Shea

No.

Deputy Robert Troy

Are people free to make an application to be part of the organisation?

Dr. Andrew Lyne

The group originated in the middle of Covid-19, so it developed through social media in response to the Dying with Dignity Bill 2020 then proceeding through the Oireachtas. We welcome any medical doctor registered with the Medical Council.

Deputy Robert Troy

People are, therefore, open to join-----

Dr. Andrew Lyne

Yes.

Deputy Robert Troy

-----and it could be far more representative, if people so wished.

Dr. Andrew Lyne

We are open to any members who, as I said, would qualify based on being medical doctors registered in Ireland.

Deputy Robert Troy

I return to my query regarding an example of a jurisdiction where an assisted dying model remains exactly the same ten years after it was initially introduced.

Dr. Andrew Lyne

If we look at the state of Victoria in Australia, where an assisted dying model was introduced six years ago, there has been no change in the legislation since and, having spoken to doctors working in the state, there are no plans for any change. Assisted dying is relatively new to many countries in the western hemisphere, but since its introduction in Victoria, it has now been introduced in all the states of Australia. New South Wales has passed legislation.

It comes into effect in the next month or so. In the state of Oregon, which has been referenced before, the significant change is that it is now accessible to American citizens who do not reside in the state. This would be akin to if we allowed Irish citizens in Northern Ireland to access healthcare here in the South. While there has been a change in Oregon, that change has been very small and not significant.

Deputy Robert Troy

There was a comment on the limits of palliative care in treating and suppressing pain in all cases. Dr. Twomey said that dying is very much part of living and that in his experience, it is very rare that someone has excruciating pain in their final hours. In those instances-----

Dr. Andrew Lyne

To explain, suffering at the time of dying is quite a complex issue. Looking at the data from Canada - part of the reason we reference Canada is that it gave us a lot of data - and the reasons people there were motivated to die, the two most common reasons were that they were not able to live life in a meaningful way and that they were not able to do activities of daily living. Activities of daily living include being able to dress yourself, being able to go to the toilet by yourself and being able to feed yourself. That was quoted by over 80% of people who requested assisted dying in Canada. That type of suffering is not readily amenable to medical intervention all of the time.

Deputy Robert Troy

That brings me to my final question. The point raised by the third contributor was about challenges, including funding challenges, and the difference in availability of palliative care from one region to the other. People may be taking an inappropriate action as consequence of not having the relevant supports. Would the witnesses not feel that with better supports, some people may not opt to take this option?

Dr. Brendan O'Shea

In the provision of medical services, it is practically impossible to say that there is enough service in any particular area because there is never enough. There is always a new development. There are always changes and there are always issues that are identified. It is very hard to say that we have enough cardiology, rheumatology, general practice or palliative care. It is important to understand that. In Ireland, by international comparators, we are fortunate in the palliative care we have.

Going back to the issue of the experience of people at end of life, suffering is complex. We can look at it very specifically and we can refer to a very small proportion of people with severe uncontrolled pain. There is another small proportion with intractable severe vomiting or severe progressive shortness of breath. All of these small margins add up to a minority of people for whom the service becomes relevant and important.

For ourselves, we have to consider the legitimacy of not wishing to be a burden. It is certainly an imperative of a kind society that nobody should have to consider this, but, for me, it is a personal decision. We have given some of our personal reflections in our case-handling. I agree with what my colleague said about us all having witnessed deaths that we would not want for ourselves. If our patients do not want those deaths either, we have to listen to that quite carefully. I put it to the Deputy that not wanting to be a burden is a legitimate basis, as evidenced by the data from Canada. This needs to be factored into our thinking.

Deputy Gino Kenny

I thank all of our guests. It has been very informative, as ever. This committee is trying to grapple with the issue of assisted dying. It can be complex and it can be very difficult sometimes hearing the witness testimony but it is important that we talk about these things. As Dr. Twomey said, in some ways we are good at talking about death but there is other avoidance around those who are living and who may want to avail of assisted dying.

My first question is on hospice and palliative care. We all acknowledge that palliative and hospice care is very good in this country, but in certain circumstances it cannot really ameliorate all conditions and there are limitations to certain circumstances. Surely in that situation, if somebody is going to die, has a terminal diagnosis, their life expectancy is days, weeks or months and it will very complicated, that person should have a choice to say, "I do not want to go through that. This is my life and my body and I want you to help me not go through that." Surely, in those circumstances a person should have a choice.

Dr. Feargal Twomey

I thank Deputy Kenny. I will echo Dr. Lyne's comment earlier on patient choice - where it is reasonable. Part of the reasonable, as I see it, is that a choice that is available to one person does not put another at risk. It is very important. Many of the contributors to this meeting are referring to patients they have met. They are reflecting what I am sure are true stories. Clearly, there are some notable and prominent cases and people who are thrust into the public eye, who never wanted to be and who have strong views on this. However, the voices of the patients who all of us see regularly and who I see in my work and my colleagues' work also have validity. In essence, if I meet somebody who has that level of distress, I need to ascertain what is causing that distress for them. However, it is the opportunity. I will give an example. If you go into an overfilled emergency department in Canada now and you cannot get a psychiatric assessment because it is too busy, you will be offered medical assistance in dying-----

Deputy Gino Kenny

That is wrong.

Dr. Feargal Twomey

-----before you have been assessed. You can be. It does not happen routinely but you can be.

Deputy Gino Kenny

That is wrong.

Dr. Feargal Twomey

Yes, and I would support that view. However, because the societal norm in Canada has now switched since the legislation nine or ten years ago, that kind of conversation is something that can occur.

Deputy Gino Kenny

That should never happen in Ireland under those circumstances.

Dr. Feargal Twomey

I am minded to reflect back on the Supreme Court's hearing exploring Marie Fleming's case which she and her partner took. The justice said he was extremely moved by her case and that he was not sure he had ever come across a more compelling witness with a more compelling story. He also said if we could construct something that would enable her to be relieved but with absolute protection to everyone else in the State, that would be something of which we would be mindful. My personal view, and one I think shared by many - maybe not all - of the consultants in palliative medicine with whom I work, is that position would remain almost as a touchstone to us in our concerns about the risk.

Deputy Gino Kenny

My second question is on palliative care and the double effect. Obviously, when people are in these situations, they are given medical intervention. What is the opinion of the witnesses on the double effect, such as in cases where there could be a chance that administration of a medication could hasten a person's death? Obviously, that is at the end of that person's life, but what is the difference if it is months away from a situation when somebody says they do not want to go through all those complications, they want to have a say in, and control over, their death, which is a human right? What is the huge difference between the double effect, which could hasten someone's death, and somebody making a conscientious decision to not want to get to that stage? I address that question at all the representatives.

Dr. Feargal Twomey

Again, I thank Deputy Kenny. If members of the committee have not heard about the double effect, I am very glad the Deputy has asked that question. I do not subscribe to the principle of double effect. I do not prescribe medicines or have medicines administered that are not prescribed, administered, monitored and adjusted downwards or upwards based on a patient's individual need.

I have never been in a situation where I am concerned that what I am doing is accelerating somebody's death.

On existential distress, I agree with Dr. Lyne that distress comes in various forms, including physical distress that may or may not include pain, psychological distress because I do not want to die or to leave and social distress because I am no longer able to support my family and I fear for my young son who has autism spectrum disorder.

Good palliative care can be provided by any clinician of any discipline. For special palliative care, we adjust medicines and monitor them extremely closely. The idea of not being unduly concerned about doses of medications leading to an acceleration of somebody dying, because they are dying anyway, is not part of my practice, nor is it the practice outside the-----

Deputy Gino Kenny

I put the same question to Dr. Brendan O'Shea and the representative from the Irish Hospital Consultants Association.

Dr. Brendan O'Shea

The problem with the principle of double effect is that it is almost discretionary to the clinician who is the key clinician in managing the clinical circumstances at that time. I would have a preference for a rights-based approach and that this service be available based on assessment and defined criteria, and available equally to anybody who feels they may require it, subject to assessment and evaluation and satisfying the criteria. If we like, that makes it a level playing pitch.

On the issue of double effect, there are uncertainties around it. It depends on whether you happen to get terminally ill, whether it is in county A or county B, or whether it is attached to this service or another service. That would be one of my difficulties in respect of it.

Dr. Gabrielle Colleran

I would refer to what Dr. Twomey has said. We have 100 palliative care members. Double effect is not something that would be active in Ireland. It is very important that the Deputy asked the question in order for us to be able to inform the committee that that would not be-----

Deputy Gino Kenny

But double effect does happen in some medical settings, I presume.

Dr. Gabrielle Colleran

Dr. Twomey would be the best person to deal with that. However, that would not be standard palliative care in Ireland.

Dr. Feargal Twomey

No. In other jurisdictions outside of this country, France in particular, prolonged terminal sedation can occur, but not in the UK and Ireland. I am also on the board of the Association for Palliative Medicine group in Ireland, which the committee will be hearing from in the coming weeks. This practice is not part of modern-----

Deputy Gino Kenny

Would palliative sedation be the same thing?

Dr. Feargal Twomey

In essence, if a patient is experiencing a natural death and is coming naturally close to the end of their life, they will often say to me “I do not want to keep going like this”. Some people would say long before their death that the prospect of life ahead is something they do not want. They ask me and I discuss with them whether they could avail of assisted suicide, and I was asked how a person would get to Amsterdam in one more recent case. A lot of that is about the fear of what could come, the fear of what is in the media and the fear of the unknown. For many people who have realistic and honest information given to them, with questions answered honestly and openly and with a realistic expectation of what is likely to happen to them, that distant request for death dissipates.

To focus on the last days of life, there are times when a patient at the very end of their life is distressed, restless, has delirium and is fluctuating in and out of consciousness because they are dying. If they are distressed in that setting, medications that may have a sedating effect can be used for pain, nausea, breathlessness or distress. However, used in moderate and appropriate doses, titrated and monitored closely in keeping with modern specialist palliative care and palliative medicine, these medicines have not been shown to accelerate anyone's death.

Deputy John Lahart

I thank the witnesses for sharing their expertise with us.

I have several questions. I do not normally ask "Yes" or "No" questions but I do have one for Dr. Twomey. Dr. Lyne said there are some exceptions to what Dr Twomey said, where palliative care, medicines and whatever is available simply do not work. Does Dr. Twomey accept this?

Dr. Feargal Twomey

I accept that absolute control of all symptoms at all times does not happen in some cases.

Deputy John Lahart

I invite any of the witnesses to answer my questions. I was very taken with what Dr. O'Shea said about burden. It seems that a sense of being a burden cannot always be relieved. Taking into account all of the evidence we have heard on the type of model we might veer towards, which, in my view, would be very restrictive whereby someone would have to have a terminal illness, if I felt as though I were a burden, whether to society or to my family, in some cases relieving that burden could further impact my dignity. If the individuals caring for me felt guilty because they were of the view that they were not providing a sufficient level of care and so went the extra mile, how would that make me feel? There is an issue with regard to dignity on which I ask the witnesses to comment.

We have spoken about burden and capacity. These are key issues. As a public representative dealing with this I can see that this will boil down to a small number of concepts on which decisions will be made. The issue of burden has been opened up today. When we hear the word "burden", we think if only the State or the system could step up. The evidence is obvious that no system in the world can step up to every possible thing. Will the witnesses comment on the concept that it is affluent and educated people who avail of it. What does this speak to?

Members of the public may be watching these proceedings for the first time. One of the first contributions I made was on the importance of allowing the voice of those who have faith to come before the committee. Every faith attempts to answer the big questions. Does chaplaincy play a big role in palliative care in Ireland? As a result of the witness statements, I have been introduced to models of palliative care. Is there one whereby chaplaincy does not exist and it is a secular model? We have had contributions from the Irish Association for Palliative Care, expert groups and chaplains. They are all perfectly entitled to come before the committee. Is there a purely secular version of palliative care available in Ireland?

The fear of death was spoken about last week with regard to how it has been sanitised in Ireland. It made a big impact on me that people are terrified of dying. The two certainties are death and taxes but we never address death. It made a big impact on me as a legislator that this needs to be addressed. We sanitise it and push it as far out of the arena and as far away as possible but it is there waiting for us. There is a line from a great poem that has always had an impact on me:

Because I could not stop for Death –

He kindly stopped for me –

Dr. Gabrielle Colleran

On the capacity issue, Dr. O'Shea's point on evolving technologies and never having enough capacity is true to a degree but we need to acknowledge that Ireland is an outlier in terms of access. We have very long waiting lists for access to mental health services. Patients with depression are much more likely to want to commit suicide in the first six months before they access treatment. We have to have adequate capacity. We will never be able to see everybody the following day or the following week. We have a long journey towards ensuring that people have access.

The question of vulnerable groups was raised.

I would be happy to send on to the committee a paper by Renard et al which analyses the experience in Oregon. They looked at the Netherlands and patients with mental health issues who were looking to access assisted dying. They were more likely to have a lower educational background and a history of child sexual abuse along with mental health issues. We need to look at all the data from the relevant systems that have introduced-----

Deputy John Lahart

Is Dr. Colleran saying that is contradictory?

Dr. Gabrielle Colleran

It is. There are different studies and committee members, as people who might be legislating on this, need to look at all of this. I am very happy to share what I am reading from here. I wish to make those two points especially on capacity. Especially in psychiatry we need to be in a position to offer people treatment for-----

Deputy John Lahart

I was referring to the mental capacity, but I thank Dr. Colleran for that intervention.

Dr. Feargal Twomey

To answer Deputy Lahart's question on chaplaincy in college affairs, some organisations would have had a particular ethos. We are moving from the term chaplaincy to pastoral care and viewing people's spirituality as a whole rather than focusing on any one religion. Clearly our society is moving from one true faith - I usually refer to that being Liverpool Football Club - in Ireland to being separated in two to a more open and understanding situation, accepting of all creeds and, importantly, none, which is increasingly the case.

Burden is a huge issue. Evidence now shows that the burden of being a carer has a great impact on the mental health of carers. The incidence of depression in some patients with cancer is exceeded by the incidence of depression in those caring for them. Regarding the burden of care, by 2042 the Irish population over the age of 65 will have doubled in size. I can happily confirm that I will a part of that population by 2042. There is a burden of care and there is an expense to providing that care. The challenge with burden being cited as a legitimate reason for wishing for medical assistance in dying is what defines a burden and whether other qualifications or criteria need to be met in order for burden to be an issue. Burden crosses into the realm of coercion or unseen pressure from families. While I will not go into detail, unfortunately, I see that frequently in my practice, with sometimes quite malevolent lack of care involving family members and others. It is important for us also to recognise that potential.

Deputy Pa Daly

Two things stood out from what Dr. O'Shea said. In his submission to the committee, he said he was not advocating for dementia to be included in the legislation as a qualifying condition at this time. Does that mean he is open to including it at some stage? He also said he wanted to adopt a conservative approach initially. Does he mean that is what he wants initially with it being broadened out at a later stage?

Dr. Brendan O'Shea

We need to cater for the pressing needs we have at the moment in this regard as an item of service delivery. We need to look to the future, but we particularly have a responsibility to improve things as they are. I had an intense conversation with a Canadian colleague recently on a reflective case presentation involving a gentleman who had a diagnosis of dementia. He and his partner worked through it themselves. They approached their own practitioner. They approached some of the relevant clinicians and specialists, including a geriatrician. Under the Canadian system, that gentleman qualified and had medical assistance in dying, which was very positively reflected on by his partner and by the GP.

At the present time, in considering the Canadian experience, one of the reflections emerging from that case discussion was the categorisation of cases into what the physician called tracks 1 and 2. The track 1 cases were those where there was an obvious pressing need because of unlimited, unrelieved pain, shortness of breath, distress and so on. Those cases, which were obvious and easily fitted the criteria, formed the majority of cases. However, in cases such as this, involving dementia, it is significantly more complex and there are a significantly smaller number of cases. Right now, we urge members of the committee closely to consider putting through legislation to deal with the majority of cases, involving people who have significant and progressive suffering as a result of progressive, metastatic and complex common cancers or who are at end-stage heart failure or end-stage COPD, where there is significant suffering and the prognosis is extremely difficult. At the moment, however, we are not recommending that dementia be considered a primary qualifying condition on its own.

Deputy Pa Daly

I have a question that Professor Landers or Dr. Colleran might answer. One of the recommendations made by Irish Doctors supporting Medical Assistance in Dying is that a regime should be applicable to individuals over the age of 18 with a progressive, incurable and terminal illness. It has been stated that a definition of "terminal illness" will need to be specified in order that it would not encompass long-term conditions or illnesses outside those urgently contemplated. Do the witnesses have any comment on what that definition might be?

Dr. Gabrielle Colleran

I am conscious that in my capacity as representing an association made up of 3,500 people with diverse views, it is very hard to give an opinion on that without having formally consulted the members. If the committee decides to recommend proceeding to legislation, we will have that consultation, but we have not had it yet. I cannot give an answer to the Deputy's question without risking not being representative, which would not be appropriate in this forum.

Dr. Feargal Twomey

There are some long-standing illnesses with which people can live for some time with treatment and management, including heart disease, COPD and so on. That might be relevant to Deputy Daly's question. Someone might have a progressive illness but the determination of a prognosis or expectation of death within months or even years is not realistic. There are conditions that progress to a stage where the prognosis is much shorter. Very severe heart failure with recurrent hospitalisations for care can have a poorer prognosis than many cancers.

Deputy Robert Troy

I have a question on the restricted nature of the regime that may be introduced. To be fair to Dr. O'Shea, he said he wants to address what is needed for now, but he is not committing to what might be needed further down the line and the potential broadening of the provisions. I asked earlier whether there is any jurisdiction in which a regime was implemented and is still functioning the same a full decade later. I am concerned about a scenario in which people, perhaps individuals with a disability, wish to avail of the service but feel the provision is so restrictive that it is impinging on their rights. Some people may feel their rights are somewhat compromised by the restrictions. Do the witnesses feel there is any possibility or risk of a challenge being taken to the European Court of Human Rights on the basis that people with a disability, in particular, feel they are excluded, because of their disability, from availing of a service that is available to somebody without a disability?

Dr. Andrew Lyne

I will take that question. We feel very strongly that the criteria set out should restrict the provision to people with a terminal illness, whether or not they have a disability. Their level of ability should not have anything to do with it.

Part of the reason we recommend that the administration of medication should be oral or intravenous is to make sure there is no discrimination against people with a disability. The greatest discrimination we have at the moment in Ireland is that of money. If a person has the money and they want to get it, they can go to Switzerland. However, the vast majority of people in Ireland do not have that option. Most people would prefer to be at home surrounded by their family and loved ones for the end of their lives. We certainly do not see disability as being a criterion for or indeed, against, someone having access to voluntary assisted dying.

Deputy Robert Troy

On people being discriminated against due to lack of money, how many people on average, travel from Ireland to Switzerland every year?

Dr. Andrew Lyne

My understanding is that it is a small number - one or two per year - but I have no first-hand knowledge.

Senator Fiona O'Loughlin

Apologies, I may have to leave if the bell goes because I am on quorum duty. I had the opportunity to ask some questions earlier and because of time constraints we did not get a response. I want to address again the issue of sanctions. This goes back to what was said about what might happen if a regime was introduced. How do we ensure that we do not go down the slippery slope? What kind of audit would Dr. O'Shea recommend be put in place to ensure transparency and accountability within a system that could be easily understood by politicians, media and members of the general public?

Dr. Brendan O'Shea

I think this is really important because, for the reasons that the Senator has mentioned, there will be pressure to change the system and expand it or otherwise. We really need to understand what services are being delivered. Historically, the Irish health system has not been efficient at generating timely data in a manner that makes any kind of sense. People, Members of this House among them, will often struggle to get timely data in relation to a range of medical services. In most other health systems where it has been introduced, general practice is significantly involved. In Ireland, everything we do in general practice is electronically tracked. Every prescription, ECG, cervical smear, chronic disease management visit and every termination of pregnancy is tracked. All that automated data flows into the HSE. If the information technology that is evident in general practice but not in our hospital system is available, then we can be confident that we will be able to understand the numbers, the indications and the geography. It will be possible to identify areas of practice that are significantly at variance from the guidelines. This information would be available on a real-time basis so we can be confident on that basis that the information technology is in place and we can be confident in the system because we will have data to observe and analyse and we will have a system that will pick up any red flags if they emerge

Deputy Gino Kenny

In the past three months we have ascertained a number of things in this committee. There is no legal impediment for Ireland to introduce assisted dying. We have gone through that in relation to the Constitution. It is up to legislators to possibly introduce legislation on assisted dying. Public opinion has indicated that the clear majority of people would support assisted dying in limited circumstances, or probably even broader ones. Internationally, more than 20 countries have introduced assisted dying and there is variation in each of those jurisdictions. We all understand this. I would hope that as legislators and a country we would introduce assisted dying in some form very soon.

It is a basic human right. A question that is referenced many times is whether, if assisted dying was legislated for in Ireland, it would change the doctor-patient relationship. Some people say it would fundamentally do that. Others say it would not. I want to get our guests' medical opinion on that paradigm, maybe starting with Dr. O'Shea.

Dr. Brendan O'Shea

The doctor-patient relationship is constantly changing in response to a variety of factors, some of which I perceive as negative and some of which I regard as positive. Certainly all of us on our better days are interested in advance practice. In general practice during the last decade we have been working to have earlier conversations with people about their end-of-life wishes. It is a struggle in the busyness of practice. Again, we refer to the research around advance practice. We are of the view that when people are consulted, they can make up their minds very well about a range of different issues, even difficult ones in respect of death. We are particularly of the view that these conversations are best had earlier. They are best had when the patient is autonomous and before they are exhausted or fatigued. End-of-life planning tools such as Think Ahead can be used to ascertain their intentions, answer their questions and provide relevant information. All of this allows us to have conversations around end of life in a way that is greatly appreciated by the patients and their households and is very effective in reducing uncertainties or unresolved issues as the person enters into the final phases of their illness.

If this is set up in the correct way - we are making a case based on the international practice that family medicine is significantly involved at the heart of it - I am confident that any impact in relation to medical assistance in dying can be handled in such a way that it will be positive and enabling and will not be prejudicial to the doctor-patient relationship. I would also have to add that, as has been the case for termination of pregnancy, I absolutely recognise that whatever system is in place will recognise and respect the position of people who are conscientious objectors and will not be required to engage in medical assistance in dying if that is against their own ethical principles. I am confident we can do this well.

Dr. Feargal Twomey

I think this is less about the doctors and how doctors feel in the doctor-patient relationship. I think it is fundamentally about individuals and society, of which doctors form a small part, because we live in this country, and those who have needs. In healthcare it is most important that the voice of the patient is heard and that the patient has a say in making a contribution to the joint and shared decision-making about what care is. I think choice is a very strong word. If the Deputy were to ask most young, fit, well people under the age of 30 a question about this topic, it would depend on the question he asked them and how informed they were about the risks and benefits to themselves and others. Increasingly in Ireland, as we move away from the family circle and family caring approach to looking after our elders, respecting our elders and so on, and as we get more modern, life to some people can be seen as a commodity. One of the appalling vistas being considered recently in Holland was that when someone reaches the age of 75, they can decide that have had their life, their life is completed now, and they can apply to have a medication that will allow them to take their own life. That is an extreme of society that I do not think this country would ever wish to get to.

If the Deputy were to ask somebody who is young and well if, at the end of life, if they were suffering and had terrible pain, they would like an option to relieve themselves of that pain, the answer would absolutely be "Yes". The task of this committee under its Cathaoirleach is, on behalf of the State, to get a wide and informed view of what is available, what should be available, and what is safe to provide for us. One of the most important voices I have heard in terms of concerns about audit, scrutiny and regulation is Professor Theo Boer, who I believe has spoken to the committee already. He is not opposed to assisted dying or euthanasia but he was not able to sustain his involvement in the oversight of practice in Holland because it had got so far outside of the regulations and guidelines that had been set.

We need to recognise that we should be very proud of the delivery of care for people with advanced disease and who are dying in this country. We clearly have enormous improvements to make and we need to continue to make those. In my personal view, the addition of the ability to aid someone in directly ending their lives, or the ability of a healthcare professional of any kind to directly end someone's life, does nothing to add to this type of care.

Professor Robert Landers

I will answer Deputy Kenny directly. It is not just about patients. Obviously patients are the central part of what we are discussing today but we must also look at the role of the medical practitioners. This is where our association comes in. Safeguards must be built into any legislation that is introduced in order to protect the role of the medical practitioner who will, at the end of the day, ultimately be central in the process.

This may relate also to the previous Senator's question on audit. I believe it is not so much about audit and looking at what was administered and when it was administered, but the decision making behind the decision in the first place. That must be very carefully monitored. It must have independent oversight so everybody in the process, the medical practitioner, the patient and the family must be protected in any legislation.

Deputy John Lahart

I thank our witnesses. The Irish Hospital Consultants Association paper was very informative in trying to balance the two views. One of the lines that struck me from it is that rarely are two medical circumstances the same. I am not speaking for the general public but that is probably news to a lot of people in the sense that conditions are conditions. It is certainly my impression and very strong view that this is why we as a committee resisted from the start in naming conditions. There are great shining lights out there alive today living with the most complex and the most challenging life-limiting conditions who continue to live great lives. That is one of the things we did here at the start.

I do not like going to the extreme as an example, which I believe Dr. Twomey has done regularly. We might have Dr. Twomey in here again sometime when we can narrow down the options. We are grappling with this. I will come back and ask Dr. Twomey questions to follow up on something he said earlier about malevolent intentions and his experience of that. We need to hear about the vulnerability, and not necessarily of older people.

On prescribing conditions, reference was made to asking younger people about end of life or assisted dying. We are probably making a big leap if we say that lots of them would say "Yes". If a microphone is stuck in front of a person, he or she would move to these conditions that we associate with life limitation whereas there are beacons out there, not just of care but also of the patient.

I will ask Dr. O'Shea a question that he will find unusual. How would Dr. O'Shea eulogise a person whose life ended in an assisted way?

Dr. Brendan O'Shea

There are ingredients for that. A key ingredient is time. Our health system delivers time for that individual, their family and their healthcare professionals to actually reflect on the life they have had. That is an empowering thing. It is a key feature and one of the ingredients of making a good death. The first thing we must do is provide the time to have these conversations wherever that is done. It is done all the time in palliative care and in primary care-----

Deputy John Lahart

Consider, for example, that someone has passed away and Dr. O'Shea has known them, it is his job to eulogise that person, and the person had chosen assisted dying. I am putting Dr. O'Shea on the spot.

Dr. Brendan O'Shea

I thank the Deputy.

An Cathaoirleach

We have every confidence in you.

Deputy John Lahart

I will come back to Dr. O'Shea and perhaps he could first address the malevolent piece.

Dr. Brendan O'Shea

I do not believe I will be any better later but I thank the Deputy for the question.

Dr. Feargal Twomey

I have a thought on that. Older people are vulnerable. In my practice, when we see people in hospital or being looked after in the community or within hospice care, it does occur on occasion that those who we might expect to care for somebody actually are not caring and the prospect-----

Deputy John Lahart

How does that manifest?

Dr. Feargal Twomey

I am conscious of the comment the Deputy made a while ago. Some of the worst cases I have come across have been quite horrifying. Even in a milder setting, there are people who should have physical care and who should be washed, turned and minded but who are not. There are people whose money is being spent without their consent, and people whose views are being sidelined. Coercion is a huge problem. It comes back to a point I have made a number of times about our fear of death and dying. For example, a person might ask me not to tell their father he is dying, because he will turn his head to the wall. You often find out later on that in fact dad knows full well that he is dying, but it is the child, who might be in his 60s, who is struggling with the stress. I have had a couple of very difficult cases recently where the challenge has been managing the patient's expectation and on behalf of that, his family's oscillating expectation potentially that their father will live forever. Coercion can be elder abuse in some of the more recognised terms, but it can be much more subtle. It can affect vulnerable people with capacity, but certainly those who do not have capacity. The UK Mental Capacity Act 2005 was brought in to protect these people.

Deputy John Lahart

That is very valuable. We will probably hear more of that. I ask Dr. Lyne to comment.

Dr. Andrew Lyne

Older people can be vulnerable. It is also important to recognise that older people very much have their will. It is important that we respect them and that they retain capacity until they lose it. We have to presume they have capacity. To go back to the Deputy's initial question about delivering a eulogy, I would say very little about a person's assisted dying because I would talk about their life and hoe much they loved life. It is not so much that the people who want assisted dying want to die; they just do not want to endure unnecessary suffering at the end of their life. In a eulogy, I would talk about the person's life and at the end, I would simply acknowledge the fact that we were able to agree to their last wish and desire on this earth and that we were able to give them that final choice, and support it and respect it.

Dr. Brendan O'Shea

Very briefly, my eulogy would be that they lived well and died on their own terms.

An Cathaoirleach

I thank the witnesses for being here. It was exactly as I would have expected - very informative and factual. On behalf of the members and the staff of the committee secretariat, I thank the witnesses for their time. As I said at the beginning, we believe this is very important work. If there is going to be a change in legislation, the possible changes it will have and the difference that will make to the witnesses' professions will be very profound, as they are aware. We have a big job of work to do and they have helped us along that road. I thank them for that.

The joint committee adjourned at 1.13 p.m. until 7 p.m. on Tuesday, 17 October 2023.

The joint committee met for a second time on Tuesday, 17 October 2023 at 7 p.m.