Joint Committee on Assisted Dying debate -
Tuesday, 28 Nov 2023

Safeguarding Medical Professionals: Discussion

An Cathaoirleach

Apologies have been received from Senators Mullen and Hoey. Senator Keogan is here instead of Senator Mullen; she is very welcome.

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. Members should be mindful of this when they are contributing. This committee discusses dying, including suicide. Support information can be found on the committee's webpage.

Our agenda item is engagement on the topic of safeguarding medical professionals. I warmly welcome, from the Irish College of General Practitioners, ICGP, Dr. Deirdre Collins, chairperson, Dr. Diarmuid

Quinlan, medical director, and Mr. Fintan Foy, chief executive officer; from the Irish Nurses and Midwives Organisation, INMO, Ms Karen McGowan, president, Dr. Edward Mathews, deputy general secretary, and Ms Phil Ní Sheaghdha; Dr. Mary Neal, reader in law at the University of Strathclyde; and Professor Harvey Chochinov, Distinguished Professor of Psychiatry at the University of Manitoba and senior scientist at CancerCare Manitoba Research Institute to the meeting. We are very grateful to them for sharing their knowledge, expertise and the wisdom of their experience with us.

The question-and-answer format of this meeting is that members will ask questions after all the witnesses have given their opening statements. A member can ask an individual witness a question or address a question more generally to all the witnesses. I ask the witnesses to please keep their opening statements to five minutes; they will see clocks in the room.

I invite Dr. Collins to give her opening statement on behalf of the Irish College of General Practitioners.

Dr. Deirdre Collins

I thank the Cathaoirleach. I will read the statement from the Irish College of General Practitioners on the topic of safeguarding medical professionals. The ICGP welcomes this opportunity to assist the committee in considering the key issues around safeguarding medical professionals. As the Cathaoirleach said, the ICGP delegation comprises Dr. Quinlan, our medical director, Mr. Foy, our chief executive office, and me as chairperson of the board.

The ICGP is the professional body for general practice in Ireland and the representative organisation on education, training and standards. It has more than 4,500 members and associate members, and 1,000 doctors in GP training. The ICGP has initiated engagement and education to identify and support the perspectives of all our GP members.

Safeguarding all medical professionals and all patients is an important strategic objective. Medical professionals and patients will require clear and unambiguous eligibility criteria, embedded conscientious objection, comprehensive oversight and robust professional governance should assisted dying legislation be enacted.

Turning to our member engagement in respect of assisted dying, the ICGP has commenced a process of engagement with our members around the professional, ethical and legal issues arising with assisted dying. We had a keynote address on ethical issues for GPs at our autumn 2023 conference, which was attended by more than 300 general practitioners, and published ethical articles in our members’ journal, Forum. Moreover, assisted dying was the subject of a dedicated ICGP council workshop in February of this year, attended by 37 council members. The workshop considered two key issues, namely, how the ICGP can support all members if assisted dying legislation is introduced, and conscientious objection. Council members at this workshop expressed a wide diversity of views and recommended the ICGP seek our GP members’ views on assisted dying. To do this, the ICGP engaged RedC Research and Marketing to undertake a qualitative exploration of the views and perspectives of our GP members on assisted dying. All ICGP members were invited to participate, with six focus groups across July and August 2023. The ICGP-RedC report, Voluntary Assisted Dying: A Report Based on ICGP Membership Consultation, was published in September 2023, was fully shared with all ICGP members and accompanies this submission.

This report found that most GPs recognise that assisted dying is a societal issue warranting public and professional discussion. GPs value informed professional discussion and clinical education to, in their words, help our patients. While some GPs are vehemently opposed and others are strongly in support of assisted dying, the majority are conflicted in the provision or support of such a service. The report identified that most would not like to get personally involved, that there is more passive acceptance than support or rejection, and that most GPs want the opportunity to discuss this with their peers and, ultimately, with their patients. It clearly identifies the key strategic role of the ICGP to inform and educate doctors, supporting all GPs to have appropriate discussions with their patients.

These engagements enable the ICGP to better understand and represent GP views and perspectives to the Oireachtas. These consultations confirm that the role of the college is to support all our members. There are many safeguarding issues for all clinicians and patients in respect of assisted dying. The key safeguards identified by ICGP members, should legislation be introduced, include, first, safeguarding vulnerable people. Concerns exist regarding patient abuse or coercion, especially of elderly people in nursing homes and those with dementia, and the inclusion and exclusion eligibility criteria must be clear and unambiguous to safeguard all patients and all clinicians.

Second, the legislation must recognise and protect conscientious objection. GPs clearly and unambiguously articulated that there must be no compulsion to participate in any aspect of assisted dying. Third, it must provide comprehensive oversight and robust governance.

Comprehensive oversight and robust governance should encompass every aspect along the assisted dying pathway, spanning eligibility criteria through to monitoring, reporting, and review.

On the safeguarding of palliative care services, GPs were concerned that palliative care might experience resource constraints if assisted dying is legalised. This could impact clinician and patient care options.

The fifth issue is protecting the doctor-patient relationship. This important relationship could be adversely affected, with broader implications for the patient’s family and wider local community.

In summary and conclusion, we welcome today’s opportunity to share the perspectives of our GP community with the Oireachtas Joint Committee on Assisted Dying. The ICGP has commenced a programme of engagement and education to identify and support the diverse perspectives of all our GP members. Safeguarding all medical professionals and all patients is a shared strategic objective. Thank you for inviting us to this Oireachtas meeting.

An Cathaoirleach

I thank Dr. Collins. I want to make a correction. The INMO is represented by Ms Caroline Gourley and Dr. Edward Mathews. I call Dr. Mathews.

Dr. Edward Mathews

I thank the Chair. The Irish Nurses and Midwives Organisation represents 45,000 registered nurses and midwives in Ireland. We represent the vast majority of nurses and midwives engaged in both public and private practice in the Irish healthcare system. We want to thank the committee for facilitating our contribution on these important issues.

Assisted dying is a highly contentious and much debated topic, both in the public domain and in nursing and midwifery arenas. Research in international nursing literature in this area discloses perspectives on this issue which have been raised regarding compassion, poor management of uncontrolled pain or other symptoms, patient autonomy, care provider autonomy, the potential for coercion and abuse and the vulnerability of people with disabilities in care. Ultimately, this debate, as members of this committee will no doubt be aware, is very complex, involving many varying legal, ethical, medical, sociocultural, and religious issues and views.

As an organisation as a whole, we take a neutral stance in relation to whether there should be a change in the law in this area. However, what is clear from the experience of all other jurisdictions is that where there has been a change in the law to allow assisted dying, there are significant implications for nursing practice which must be considered in four areas, which are from legislative, regulatory, professional practice, and employment perspectives for our members.

I mention first the issue of palliative care. Whatever decision is ultimately made by the Legislature in this area, the importance of palliative care must not be underestimated. The need to improve, expand and ensure access to appropriate palliative care services is something recommended in all discussions around assisted dying. It is recognised that difficult conversations revolve around and are central to the provision of high quality palliative and end of life care. However, we must retain the distinction between therapeutic end of life decisions as part of palliative and end of life care on one hand and assisted dying on the other. As members will see in our submission, which, in the interests of time, I know they will have an opportunity to read, it is important to recognise the deficits and unmet needs which have existed and to ensure improved services, increased investment, improved nurse staffing levels, and to maximise nurse-led services in this area to increase accessibility across all of Ireland.

There are of course specific issues which arise for nurses and midwives. I recognise the submission of my colleagues in the college. There is no doubt that, while it is a slightly different context, very similar issues arise for nurses and midwives in many respects. Research shows that in all jurisdictions which have introduced legislative changes to facilitate access to assisted dying, and this might not be something that has been appreciated to date, nurses are likely to be the first point of contact for patients making requests for information about assisted dying services. Therefore, the impact of any change in the law on nursing practice requires careful consideration and consequent planning and clear interventions to avoid interference with the quality of care a person can expect, and to protect healthcare professionals as well.

Drawing on experiences internationally, I turn firstly to legislation.

There are deeply held views from a personal, moral, ethical and religious viewpoint in this area, and the right of nurses to conscientiously object to participating in care associated with assisted dying must be protected. This right is currently protected under the NMBI code of professional conduct and ethics for nurses and midwives. Should a legislative change be recommended in this area, it is also important that such protections are reflected in legislation.

The committee is also asked to consider what role advanced nurse practitioners may play if there is a change of law in this area. It is an area that has been under-explored in other jurisdictions that have changed the law, and has led to certain issues emerging about what the role should or should not be in that area. If there is to be a legislative change, it is also very important that either in the context of the legislation, and-or in the context of regulatory advice, the intersections between assisted dying and both assisted decision-making and advanced healthcare directives are adequately addressed. Failure to do so in other jurisdictions has led to unintended consequences which have in some instances increased suffering and also increased difficulties for professionals.

There is a requirement for regulatory change. In the interest of time, I will simply note that the current code of professional conduct and ethics for nurses and midwives, on one reading, would be entirely inimical to the provision of assisted dying services. That is not the only reading that is available, but regulatory changes would be required. As well as changing the code of professional conduct for nurses and midwives, there would be a requirement for very clear regulatory guidance to make sure that nurses and midwives are clear on exactly what is permitted and what is not permitted in particular contexts. That is necessary to protect the professionals, but to be fair, if it were to be decided by society that there should be the change in service provision in this area, then it would be necessary to protect that service provision and ensure its efficiency as well.

From a professional practice and employment point of view, it is absolutely essential that there are clear policy and procedural guidelines. It is essential that professionals are provided with education and training in the areas where change will occur. It is necessary that there is a robust ongoing professional supervision. It is also necessary to recognise that nurses are often profoundly impacted by either discussing assisted dying or participating in the provision of assisted dying services, and consequently, they are the most likely persons to be first consulted and to have the highest exposure to patient suffering over a 24-7 cycle. Therefore, we must provide personal support, including debriefing sessions. We must respect those who have a conscientious objection, legislatively and from a regulatory perspective, and assist persons to explore if they have an objection.

In conclusion, arising from the very many, varied and complex issues and views involved in this issue, we take a neutral stance in relation to whether there should be a legislative change. However, if there is to be a legislative change it will be important, from the perspective of protecting professionals and also the public who expect a certain level of service, that there is adequate planning and provision made from a legislative, regulatory, professional practice and employment perspective.

An Cathaoirleach

I invite Dr. Neal to make her opening statement.

Dr. Mary Neal

I thank the members for the opportunity to address the joint committee on the vitally important subject of protection for professionals. I am an academic lawyer and my background is in healthcare law and ethics, and most of my research is in conscientious objection. In my view, protection for professionals has to be a priority for any legislature that is considering a change to the law in this area. I should add that like other witnesses, I am neutral on whether the law should change, and I will focus specifically on the challenge of accommodating conscientious objection.

Conscientious objection arises where a professional who would otherwise be expected to have a role in the assisted dying process needs to opt out of participating because to do so would violate their moral and professional integrity. So, what do professionals need to be protected from, and what is the best way of achieving that? In general, what they need to be protected from is sharing in moral responsibility for an outcome they believe to be seriously morally wrong. That is what a conscience clause is for. Precisely what actions professionals will need to be protected from having to do will depend on the way that a system of assisted dying is set up, and what role it envisages for professionals. All attempts to change the law in the UK have envisaged a role for health professionals, and we see health professionals having involvement in the assisted dying process in those jurisdictions that already allow it.

Their roles might involve giving information; discussing treatment options and advising patients about those options; assessing patients’ eligibility for assisted dying; assessing their capacity to make requests for assisted dying; prescribing and-or supplying medication for use in ending life; providing other forms of care to patients who are progressing through the stages of an assisted dying process; and completing paperwork during and after the process. This is not an exhaustive list, as the healthcare professionals present will know well.

Protection for conscience needs to be meaningful and not partial. By this, I mean that a system in which professionals are given the right to opt out but only from so-called "direct" involvement or only on condition that they refer the patient on to another provider does not fulfil the main purpose of a conscience clause, namely, to protect the professional from sharing in moral responsibility. As soon as we reflect on the nature of moral responsibility, it becomes clear that those who facilitate or support outcomes, even in indirect ways and even by signposting, share in the responsibility for those outcomes. Forcing morally-conflicted professionals to be indirectly involved or to refer patients to other providers also risks creating nodes of anxiety, distress and delay in the process, and that can impact on patients. Therefore, partial protection is, in my view, the least desirable way of accommodating conscientious objection both for professionals and patients alike.

I believe the best way of protecting professionals is to design the system so that, insofar as possible, only those professionals who actively want to participate in the process need do so. Again, it is difficult to imagine how this might look without knowing what the whole system would look like, but it might involve an opt-in system across the country as a whole or creating specific positions or roles for providers of assisted dying. Legislating about where assisted dying is permitted to take place might be another way of designing much of the potential for objection out of the system. For example, in the UK, most abortion is provided by specialist clinics, where all employees are obviously willing to participate in providing it. Some abortions still need to be provided in hospitals, where conscientious objection can arise, but as far as the great majority of provision is concerned, conscientious objection is avoided. Similarly, much assisted dying could take place in specialist clinics, where conscientious objection is not an issue. Of course, some patients who want to access assisted dying might be in hospitals, hospices or their own homes and might be unable to travel to clinics. However, the existence of special clinics is one way that much of the scope for objections might be avoided. Using one of these strategies or a combination of them could be far preferable to an opt-out system in which the onus is on those who object because, just as with abortion, it is much better for both patients and professionals for the issue of conscientious objection not to arise and for the service to be provided smoothly by willing providers. A statutory protection for conscience, through statutory provision, would be needed to protect those who still might come in contact with the process.

There is evidence that levels of conscientious objection to assisted dying are relatively high within the health professions. They are much higher in the UK than levels of objection to abortion, for example. Legalisation has a normalising effect, so once a new law is in place, levels of objection might soften. However, it would be a mistake to rely on that. Therefore, any attempt to change the law should be informed by a large-scale survey of the relevant professions. It is encouraging to hear that is already being done with regard to GPs. It should be replicated across all of the relevant professions and those who might potentially be asked to be involved.

Professor Harvey Chochinov

I appreciate this opportunity to present to the committee. By way of background, I am a distinguished professor of psychiatry at the University of Manitoba, former chair of the Federal Government’s external panel on options for a legislative response to Carter v. Canada and a long-time palliative care researcher who has published extensively on psychological matters pertaining to palliative care.

If we are going to discuss safeguarding medical professionals, we need to articulate exactly what they need to be protected from. The context of a wish to die, whether it is a passive longing for life to be over sooner or an outright request for hastened death, is suffering - abject, soul-crushing suffering.

Aside from how this affects the sufferer, for healthcare providers it can elicit feelings of impotence and helplessness. This can lead to therapeutic nihilism and an impulse to abandon, with the rationale being that if suffering cannot be fixed, it no longer resides within the purview of medicine. This kind of clinical withdrawal has been studied and associated with heightened suicidality in patients who are denied follow-up or a reliable connection with their healthcare team. Working in the context of suffering can also elicit a desire to fix or to rescue. Some of Canada’s strongest MAID proponents and providers have described their work as "the most beautiful" they’ve ever done. I suspect these powerful feelings may represent collusion with hopelessness, wherein both parties share a mutual understanding that life for the patient has become futile; they feel aligned in having reached this joint conclusion and medical assistance in dying appears to offer a quick and simple solution. Healthcare providers must understand this nihilistic dynamic, pushing them towards a way to fix or eliminate suffering.

A wish to die is an expression of human suffering. Clinicians must learn to sit down and lean into discussions exploring the nature of patients’ anguish, discerning their sources of distress, identifying potential solutions or mitigation strategies, recognising that even the very acknowledgement of suffering, like feeling a burden to others, or no longer feeling like the person they once were, is a form of affirmation that can sustain patients’ sense of worth and safeguard integrity of personhood. With the advent of MAID in Canada, too often, clinicians are inclined to interpret a wish to die as an opening to evaluate eligibility for MAID. This can be harmful for patients and healthcare providers. It leads both down a legalistic pathway, focused on whether specific criteria are being met, rather than entering a rich clinical encounter, which is foundational to palliative care and dignity-conserving practices.

Last March I published an article on what I coined intensive caring. So far, it has been downloaded over 10,000 times. It describes ways for healthcare providers to address suffering, which includes not abandoning patients; investing in who they are as people; offering kindness, respect and hope; as well as affirming the ongoing worth of patients as human beings, while maintaining professional therapeutic humility. Healthcare providers must become conversant with intensive caring, empowering them to be with patients who feel they no longer matter, or that their lives should be ended.

Our own research has shown that when healthcare providers become disengaged from the human side of medicine, including things like not acknowledging a patient personhood, they are less likely to experience job satisfaction and more likely to be vulnerable to professional burnout. For some healthcare providers, the practice of MAID takes them in a direction that feels antithetical to their professional calling. Feeling bound or pressured to make legalistic determinations about MAID eligibility, feeling an obligation to refer when there is conscious objection, or feeling that approaches embracing hope, healing and intensive caring are antithetical to a mindset that includes MAID can all lead to moral distress and a heightened risk of professional burnout.

In summary, the advent of medical aid in dying will be accompanied by notable healthcare professional challenges that will require certain safeguards. As has been said by other witnesses, physicians and healthcare workers must be free to not participate on many levels of this practice. Insulating the practice of medicine from MAID as much as possible will safeguard patients, by allowing doctors and healthcare workers to focus on their suffering, recovery and healing, without compromise. Healthcare providers must never be obliged to raise the option of MAID, which is an approach being advocated in Canada by MAID proponents. If assisted suicide is to reside within a medical model, it must be an exceptional procedure, separated and away from the heart of medicine, and an option of last resort. Conscience protection is critical; healthcare providers must not be forced, pressured, or coerced to act in ways that violate their beliefs, integrity, or standards of evidence-based practice. I thank the committee for this opportunity and I am happy to answer any questions.

An Cathaoirleach

I thank Professor Chochinov very much. I call Deputy Kenny.

Deputy Gino Kenny

I welcome all the witnesses. This is a very interesting discussion. We obviously have a number of witnesses with neutral positions, which is a good thing. Has there been a change in the previous position of the INMO and the Irish College of General Practitioners on assisted dying? Has it always taken a neutral stance or has its position changed over time?

Dr. Deirdre Collins

I suppose our position at the moment is that we are representing the broad views of all our membership. Some are very supportive and some are very firmly on the other end of the argument and there are many people in the middle. This has been very much an opening of the conversation. We are still in the early stages of that exploration and conversation. To answer the Deputy directly, there has not been a change in our position but we are moving along as time, society, life and legislation dictate.

Dr. Edward Mathews

There would not have been a change over time in the INMO position. There are very strongly held views across the spectrum on this issue. Some views are very binary, at one end of the spectrum or the other, and then there are discussion points in the middle. Deputy Kenny will have seen that, as part of our submission, we tried to represent all our members. To assist the committee, if there is a decision to change the law, we have set out what needs to done to be balanced and to protect our members and service provision.

The Deputy may have noted that our submission refers to the importance of exploring, with health professionals, the views and objections they may have in order that they can reach a position of deciding whether they have a conscientious objection. That is essential because in other circumstances people engaged in such a process and some decided, in the context that it arose, that they did not have a conscientious objection while some decided that they did have an objection. The point is to allow them to do so because if a decision is made to go ahead with this, it will be new in terms of practice, and also to facilitate that in order that, as a colleague mentioned in an online contribution, services can be organised in a way that both protects the professional and allows the service to be provided.

Deputy Gino Kenny

If, as I hope, voluntary assisted dying is legislated for, the first port of call for those who would raise the issue are GPs. We have seen that the issue has been raised with GPs in different countries where voluntary assisted dying has been legislated for. GPs are on the front line, as such, in more ways than one. GPs probably know their patients more than anybody else in a medical setting. They probably have more knowledge of the person than anyone else. I understand the point that the majority of GPs are conflicted. There is obviously a very nuanced view of assisted dying. Could the witnesses elaborate on how GPs are conflicted in terms of the relationship they have with their patients?

Dr. Diarmuid Quinlan

Deputy Kenny is absolutely correct. GPs are involved with their patients from birth throughout their lifetime until their death. Our engagement with members has made it very clear that some members are in support of assisted dying and others are equally strongly opposed to it. Many of our members are in the middle. They are conflicted in that they see the professional obligation of a doctor is to support patients.

They have their own personal moral beliefs, which are very strongly held in, which fed into the conscientious objection piece that we have discussed. There is a tension between a doctor's and GP's personal views, his or her professional obligations and the professional role. That tension is there and our role is to support all our members with education so we can help them explore and come to a better understanding of the ethical, legal and moral implications for them personally, for the profession and for patients in assisted dying.

Deputy Gino Kenny

The confliction is that at the moment the voluntary system is not legal.

Dr. Diarmuid Quinlan

Yes.

Deputy Gino Kenny

I am sure in Dr. Quinlan's professional career patients have brought this issue up. It is a difficult conversation to have with somebody. The person is in a situation where they do not want to go through a period of their life and they want to forgo that. I understand this and I believe the majority of people would understand it. We are here to tease all of this out and hopefully make a recommendation of legislative change.

I understand there is a neutral position on safeguards. Safeguards are the heart of this debate. What kinds of safeguards would offer comfort to GPs around any sort of legislative changes that could happen?

Dr. Diarmuid Quinlan

Safeguarding medical professionals and safeguarding patients are equally important. Some of the safeguards might be relatively straightforward, for example, an age prohibition. Other safeguards may be designed to avoid medical tourism, whereby one must be a resident of the State. They are clearly fairly binary for most people. Other safeguards then come into the eligibility criteria: which patients become eligible; what is the medical diagnosis; do we need a medical diagnosis; and who verifies that. Then we move into the whole conscientious objection piece and how we safeguard clinicians and patients when conscientious objection is a major point for those involved. The safeguards really are very important for professionals but also for our patients.

Deputy Gino Kenny

In previous legislation around the termination of pregnancy we have seen that this can actually be done. Legislation can be put in place around conscientious objections and so on where GPs or other medical professionals do not want to partake. That can be done and there is precedence in this country. I will come back in during the next part with a few more questions.

An Cathaoirleach

Professor Chochinov wants to come in briefly.

Professor Harvey Chochinov

I did not indicate that my position was neutral. In fact, I feel that including medical aid in dying within the scope of palliative care is not good for end-of-life care. It is not good for clinicians and it is not good for patients. I raise this not on moral grounds but on clinical grounds. Many aspects of palliative care are about the quality of the relationship between the patient and the healthcare providers. We have done studies that have looked at what are the things that are most determinant of whether or not a patient's sense of dignity is upheld towards the end of life. Over and above anything else is the idea of being respected and of being understood at the end of the day. I published a paper in the Journal of Clinical Oncology titled "Dignity and the eye of the beholder" showing that the disposition of the healthcare provider and the ability to affirm the worth and the ongoing connection with that healthcare provider was the thing that most determined a patient's dignity. From other studies we know that when patients feel they no longer have that kind of ongoing solid connectedness, it heightens their suicidality, and not offering follow-up care is one of the predictors of suicidality in patients who are experiencing advanced illness.

Deputy David Cullinane

I thank our witnesses and thank them for their evidence today. I have questions for specific witnesses as opposed to getting a response from everyone, so I will put the questions specifically to the witnesses.

I will start with the representatives from the ICGP to make the best use of my seven minutes, given that our time is limited. I accept Dr. Collins is saying that the ICGP's research shows, not just anecdotally, but from opinion polls, that there are very mixed opinions on either side of this debate among the ICGP members and that a majority - or a significant number of its members - are somewhere in the middle and are trying to figure out what the best way is to approach this issue. I imagine that is indicative of society more generally. I will ask a very straight question. Does the ICGP think it will be very difficult to legislate in this space?

Dr. Deirdre Collins

Our role is a different one from forming the legislation. Our role is from a membership organisation. I do not want to reiterate the words in my opening statement but we are an educational body so our role here is to give the committee the information, inasmuch as we have been able to gather it.

Deputy David Cullinane

My question may be a different one then. Would Dr. Collins accept it would be complex?

Dr. Deirdre Collins

Legislation?

Deputy David Cullinane

Yes.

Dr. Deirdre Collins

Yes, but I am not the lawyer in the room and I am not the legislator so with any of these things-----

Deputy David Cullinane

If I just come back to the opening statement, I will ask the question that may point to the reason I asked the first question. Dr. Collins spoke about clear boundaries coming from the RedC Research and Marketing report requested by the ICGP, which set out a number of clear boundaries for those GPs in favour of assisted dying. One of these is a medically verified terminal illness, possibly with the prospect of a difficult death. How difficult would it be to determine within legislation what is terminal in those circumstances? I imagine there are different layers of that. There are people who could be weeks, months, or years away from death. How can it be determined medically, in advance of someone's death, how difficult that death will be? That is what I am saying. Is that a very difficult space from which to legislate?

Dr. Deirdre Collins

It is a hugely difficult space for any of us. The answer is "Yes". It is a complex question and there are so many pieces that come into it. Medical diagnosis is obviously key to it but then there is also the patient's own health as a background, and the circumstances surrounding that. It is hugely complex.

Deputy David Cullinane

That was my point in my opening remark. Dr. Collins accepts that it is complex and difficult, even with the mitigations, boundaries, and safeguards that would have to be put in place. That is not to say it cannot be done, because I am broadly supportive of legislation in this area, but we need to accept it will be difficult and challenging to actually legislate.

Dr. Deirdre Collins

Yes.

Deputy David Cullinane

Fine. Dr. Chochinov may be able to answer this next question. I thank him for his testimony as well. He put forward a proposition that we can remove assisted dying from the medical model. If I am right, and Dr. Chochinov may correct me if I am wrong, he seemed to put forward a proposition that we can have a distinct new professional role. Is that correct? Even if we were to put such a model in place, is it really possible to insulate medicate professionals, particularly in early stages where their judgment would be needed on some level? I put that question to Dr. Chochinov.

Professor Harvey Chochinov

I was not trying to necessarily suggest a separate medical profession or a separate profession outside of medicine. What I would say is that end-of-life care puts itself in jeopardy when it starts to look at itself and think of itself as including medical assistance in dying within its scope. Again, that is not based on moral rationale but on clinical rationale. The problem we are dealing with here is how to address human suffering, particularly how to address human suffering towards the end of life, and one of the most powerful things we do in palliative care, besides trying to treat pain and mitigate symptoms, really is about the relationship between ourselves, the healthcare provider, and the patient. Based on experience and data, we know the integrity and solidity of that relationship is the thing that sustains patients.

We need to make sure healthcare providers are not in a conflicted space where they are supposed to have that kind of relationship and connectedness which is key to palliative care while at the same time trying to balance an obligation to determine whether the person would be better served by hastening his or her dying.

Deputy David Cullinane

I thank the Professor. I have a follow-on question. I agree with his analysis of palliative care, its importance and what it does, but in his opening remarks he stated that if assisted dying is introduced, it should be an option only of last resort. I know the Professor somewhat clarified his position when he said he is not neutral, as such, but I ask him to provide examples of what he believes would be a last resort.

Professor Harvey Chochinov

I referred to it being a measure of last resort because what we are seeing in Canada is that is less and less becoming the case. We originally introduced legislation in 2016 which stated this would be available only for people who had a reasonably foreseeable death. Almost immediately, that was challenged. Several years later, there was new legislation that said it is discriminatory to provide this only for people who are imminently dying and there is a need to provide it for people who are not necessarily imminently dying. As we speak, we in Canada are in the throes of another debate, with this one in respect of whether assisted dying should not be restricted to people who have physical conditions, and that mental illness alone should be an eligibility criterion for people who are suffering. I use the words "last resort" simply to underscore the fact that even though we have tried to put a tight circle around legislation, it has been impossible to control and, if anything, eligibility has been expanding over time such that, as of the last report, 45,000 Canadians since 2016 have availed themselves of medical assistance in dying.

Deputy David Cullinane

I thank Professor Chochinov.

Deputy Emer Higgins

I have two questions on issues similar to those Professor Chochinov has just addressed, but perhaps he will elaborate. He is not necessarily talking about starting a separate profession but, rather, a new profession within a profession, if one likes. I would like to understand more the potential risks in that regard. Could it be divisive? Could it intensify what he described as conflicted space that medical practitioners could find themselves in when it comes to balancing obligations? Would additional regulations or legislation be needed to start up that sub-profession, if one likes?

Are the witnesses from the INMO aware whether advanced nurse practitioners have any role in assisted dying in countries outside Ireland?

My final question is for all the witnesses. Most people believe that if assisted dying were to come in, it should be in exceptional situations. The phrase "last resort" has been used quite a lot. What would be the medical ramifications of that? What does it mean in terms of a medical model?

Professor Harvey Chochinov

I will begin by responding on the Deputy's first question. I apologise that my name is so difficult for everyone to pronounce. Dr. Harvey is fine, but my name is Harvey Chochinov. The Deputy asked why I have talked about the importance of insulating medicine as much as possible. The reason is that, again, we must not lose sight of what we are discussing. We are talking about how we deal with severe suffering that can undermine the wish of a patient to go on living. I have been studying these issues for decades. Some 30 years before Carter v. Canada, I published an article in the journal of the American Psychiatric Association on whether it was ever normal for terminally ill patients to desire death. We showed that approximately half of people who are approaching death think, at least on occasion, about wanting life to be over.

We need to understand that this is a very normal experience.

Whatever else we want healthcare providers to be able to do, we want them to be able to enter that space and understand how to unpack what is going on with a person that is leading him or her to no longer want to go on living. What is increasingly happening is that because medical aid in dying is available, we oftentimes find that people are seeing that expression as an invitation to determine eligibility criteria and do a determination as to whether a person meets criteria for medical aid in dying. This is really missing the boat because if we are going to provide good-quality end-of-life care, we need to respond to a wish to die, to sit down, lean in and ask what that is about. One might ask whether doing so makes a difference. Are there not sources of suffering that are just so overwhelming that death is the only option? We know the importance of human connectedness. I have the data right here that says providing patients with respect and understanding is the most ardent predictor of whether dignity is upheld. That is an effective means of dealing with a wish to die. It is the reason I have said we need to insulate the medical profession. The thrust of what they need to learn is how to address human suffering.

Dr. Mary Neal

I agree with what has just been said. Deputy Higgins asked about the medical ramifications if assisted dying is allowed. It would be quite important to try to insulate healthcare professions from assisted dying if it is made lawful, although I appreciate it is not possible to completely insulate them. That is why I spoke in my opening statement about trying to design conflict out of the system by ensuring, insofar as possible, that only those who want to participate in the process will have to do so. That is obviously better for professionals and, in my view, it is clearly better for patients as well. If a democratic decision has been made to provide a service, nobody would want to see that service being provided in a way that causes distress, anxiety or delay for people trying to access it. That applies across the board, to professionals as well as patients. Dr. Chochinov talked about insulating the profession. I agree it is obviously desirable to ensure that only those who want to be involved are involved, and to protect the consciences of all those who do not want to be involved. That needs to be done by design, which is why it is so important to think about it at this early stage of the process. Any Legislature that is looking seriously at this issue, as the Oireachtas is doing, needs to be alert to the need to design these kinds of problems out of the system.

Deputy Emer Higgins

I interject to thank our guests. This is the first meeting we have had where I really feel witnesses have come forward with ideas and practical examples as to what we can do to implement safeguards should we legislate for this service. I really appreciate that. It is very valuable coming from particular people who are working in the sector.

Dr. Edward Mathews

Regarding advanced nurse practitioners, there are jurisdictions where they have partial roles. Depending on the nature of the service that might be legislated for, advanced nurse practitioners could have different roles. In particular, where there are services, for example, that are provided predominantly by an advanced nurse practitioner and there is an interface between end-of-life care and any other decision that might be made in regard to assisted dying, noting the intersections and the potential benefit of their separation, it is very important to maintain that frame of mind around the role of advanced practitioners. In other jurisdictions, certainly, the increasing role of advanced nurse practitioners has become a huge issue in this area. If I am being absolutely honest, it is less so in Ireland because, in some cases, we are dealing with situations where the advanced practitioner is the only healthcare professional somebody might have access to in a very geographically remote area. We do not have the same context here.

Deputy Alan Farrell

I thank the witnesses for their opening statements and contributions thus far. I echo Deputy Higgins's comments on the constructive approach taken by our guests, which is much appreciated. Given we are on the subject of safeguarding, I have questions about mental health supports for practitioners. This is an interesting part of the conversation we are having this morning. My first question is to Mr. Foy. What would be the ideal scenario in terms of legislation being passed by the Houses of the Oireachtas to enable assisted dying? What sorts of supports would he like to see in place to provide both professional and psychological supports to his members?

Mr. Fintan Foy

I ask my colleague Dr. Quinlan to answer that question.

Dr. Diarmuid Quinlan

The Irish College of General Practitioners already has a really good practitioner health programme. We are very conscious of looking after the mental well-being of our members. As part of the consideration of mental health supports for practitioners, the evidence from other countries is that clinicians who take part in an assisted dying service find it an intensely stressful undertaking and not something that is entered into lightly. Taking note of that, we would see the conscientious objection aspect as being particularly important to protect our GP and clinician members from being coerced into participating in a process to which they have a deep moral objection. That conscientious objection aspect is important, as are mental health supports. We already have very good, robust mental health supports for our members within the Irish College of General Practitioners.

Deputy Alan Farrell

Does Dr. Quinlan envisage an additional layer of support for such a service delivery or would he be content with what is currently available?

Dr. Diarmuid Quinlan

We certainly would be open to exploring the need for additional supports for our members should such legislation be passed.

Deputy Alan Farrell

May I ask the same question of the INMO representatives?

Dr. Edward Mathews

The Deputy has raised a really important point, which is referenced in our submission. The experience internationally where nurses have been involved in assisted dying services suggests that we have to break the issue into two paradigms. One is the discussion paradigm and the other is the participation and-or care paradigm. Both have been found to be equally burdensome, which I say in a very respectful way, from a professional point of view. The international literature and international experience points very clearly to the requirement, for example, for debriefing sessions, where a professional is asked to provide information to a patient regarding the nature or availability of a service, and then there is the provision of care in respect of that service. Professional debriefing and counselling have been found to be very lacking in other jurisdictions. If there were a decision to change the law in this area, as part of the practice support and employment measures enabling that, we could not simply rely, in the health services in Ireland, on the employee assistance programme and people lifting the telephone if they have an issue. There must be a better system of support, involving peer support and practice supervision, which identifies issues and then provides a tiered pathway to support.

That is not taking away from the point of view of somebody who has a conscientious objection and may need support. That is not the whole of it but it is a very important part of it and it is very important to protect conscientious objection. Equally, however, those who do not have a conscientious objection and who participate in discussions or in the delivery of services require support. There must be a clear roadmap to that and, beyond a roadmap, it must be clearly set out that people will be offered appropriate professional supervision and structured debriefing to allow them to continue to provide services to patients where they are in an end-of-life scenario.

Deputy Alan Farrell

I appreciate that-----

An Cathaoirleach

Deputy Farrell, you seem to have gone on mute.

Deputy Alan Farrell

I thank the Chair. It is a rare occasion when I am muted. I appreciate Dr. Mathews's response on behalf of the INMO.

It is important and I appreciate his making those points. Dr. Chochinov might have a view from the Canadian experience. Were additional supports provided to general practice and nurses in respect of service provision?

Professor Harvey Chochinov

Not formally that I have seen. It may be that where there are medical assistance in dying teams, there is mutual support embedded within those models. I have not heard of additional mental health or other supports being formally organised. That said, it is stressful at every level for healthcare professionals who feel implicated in being drawn into a practice they do not find tenable. Again, my objection here is not so much a moral one as a clinical one, namely, that this is clinically antithetical to providing best care.

Another important point relates to the psychology of the healthcare provider. It is very important for healthcare providers to understand their own psychology and motivation in the context of what draws them into the realisation it is time to implement medical aid in dying. The dynamic of that often relates to a sense of helplessness or futility. If a healthcare provider is becoming well versed in how to attend to people who are suffering, he or she needs to confront the idea that he or she is dealing with problems that are huge and overwhelming. Rather than yielding to this sense of therapeutic nihilism, the healthcare provider needs to engage in all the ways I described in the paper I submitted to the panel, namely, the ways we know are effective in addressing human suffering.

Deputy Alan Farrell

I thank Professor Chochinov. I appreciate the viewpoint. I would not like to leave Dr. Neal out. She may wish to use the time I have remaining to offer her view.

Dr. Mary Neal

I thank the Deputy for bringing me in. I do not have a view on this because mental health is outwith my experience. I will give the Deputy his time back. He might be able to use it.

Deputy Alan Farrell

That is fine. I thank Dr. Neal.

Senator Lynn Ruane

I thank the witnesses for their presentations. Last night, I researched this issue and tried to read wider than the submissions that were provided in order to understand or, as a person with zero medical experience, try to understand some of the implications and complications associated with this. I am finding it difficult to come up with questions because I am more in a process of thinking and processing the things I am trying to understand. I will try my best to capture it. My instinct is that conscientious objection should be valued and respected. When I go one step further, however, I wonder about the parameters and limits of conscientious objection. Moral integrity, rather than professional integrity or whatever, is the paramount reason that in some limited areas of medicine or medical care conscientious objection is accepted, valued, protected, given and all those things, but the moral integrity of that individual seems to outweigh the moral integrity of the patient who has a right under law to access this if he or she meets the parameters and criteria. It is about finding the gap between those two. How does one balance the moral integrity of the individual who has a right under law with the moral integrity of another person to have a conscientious objection? That is where compromise comes in with regard to legislatively accounting for steps the individual who is objecting should take in order to ensure the moral integrity of the patient is upheld and not ignored. I read Dr. Neal's submission and hope I have not misunderstood it. She is basically saying that in this space, even engaging in literature or referral should be included in conscientious objection.

That places a massive weight on the hierarchy of a professional's moral integrity and dignity, rather than on vulnerable patients, who may not have the ability to access that information elsewhere or may have no family. The professional in question may be the patient's primary doctor. Do the other witnesses agree that conscientious objection, as I understand it from Dr. Neal's piece, includes the referral process or even bringing a different doctor into the room? How can anyone balance that?

There is also the therapeutic value piece. From some of the pieces I was reading on the issue, one would get the sense that people should not have access to assisted dying because it does not have therapeutic value from the point of view of the medical profession. How do we define what therapeutic value is? It may be that dying well in accordance with one's wishes has a real therapeutic value, even if the result is the end of life. How does the profession define therapeutic value or potential? Continuing to live may have no therapeutic value at a certain stage of a person's life. How do we determine what therapeutic value is?

Does conscientious objection when it comes to upholding the law only exist within the medical profession? This is where I begin to struggle on contentious issues. Doctors, nurses and other health professionals are not the only people with a conscience or moral integrity around upholding laws within society. I will take the area of drug use, for example. Imprisoning an addict who has been caught with heroin does not have any therapeutic value. Some gardaí, judges or whoever may ask why they cannot conscientiously object in those circumstances. Why do other people not get to conscientiously object and say it is against their moral imperative to uphold this law? Why does conscientious objection exist in the medical profession but not elsewhere? Maybe it does exist elsewhere and I am not aware of it.

Dr. Mary Neal

I thank the Senator for asking that question. All of us witnesses have said we support the facility for conscientious objection as part of this but it is important for that to be explained. There are arguments for and against conscientious objection and it is important that it does not go unchallenged. It is important the Senator has raised that question. The limits of conscientious objection is an important question. I devote most of my energy to writing about it. I cannot speak for the other witnesses but where I begin is by asking what conscientious objection is designed to do. It is designed to protect people against having to share in moral responsibility for something they regard as seriously morally objectionable. Taking that as a starting point, I then ask what kinds of activities render people morally responsible. The Senator referred to the giving of information or the referring of patients on to another provider. How do we strike that balance? It is a delicate balance that needs to be struck. My question when thinking about this is whether those kinds of behaviours involve people in moral responsibility for the outcome. That is a difficult question in the context of a controversial issue, such as assisted dying or abortion. In some of my published work on this issue, I have written about the example of the Nazi genocide - something that is unquestionably wrong and we would all regard as very wrong. If we look at something that is unquestionably heinous and wrong, we would regard those who are involved in more administrative, hands-off or indirect ways as sharing in some of the responsibility.

That is not to say they are primarily or seriously responsible, but they share some of the responsibility for facilitating and promoting the outcome. We saw that in a case a few years ago where an old man in Germany who had been administratively involved at Auschwitz was tried for genocide. His name was Oskar Gröning and he was known as the bookkeeper of Auschwitz, which emphasised the administrative nature of his involvement. Although he argued he was not legally guilty of genocide, he acknowledged the issue of moral responsibility. When something is very obviously wrong, it is easy for us to see that people who are involved in small, bureaucratic or indirect ways share in the responsibility for that-----

An Cathaoirleach

I thank Dr. Neal.

Senator Sharon Keogan

I thank the witnesses for coming in and giving us a greater insight into the roles that doctors, physicians and nurses have within this debate. I was touched by something Professor Chochinov said earlier. He stated:

A wish to die is an expression of human suffering. Clinicians must learn to sit down and lean into discussions exploring the nature of patients’ anguish, discerning their sources of distress, identifying potential solutions or mitigation strategies, recognising that even the very acknowledgement of suffering, like feeling a burden to others, or no longer feeling like the person they once were, is a form of affirmation that can sustain patients’ sense of worth and safeguard integrity of personhood.

I thought that was a very powerful paragraph and I wanted to restate it.

How could an intensive caring model be rolled out in Ireland? Within the palliative care medical professions, are there further supports that could be considered in our hospitals? Should we focus on dignity therapy rather than assisted suicide legislation as a better way to deal with the complexities and hard cases that often emerge in these discussions about end-of-life care? Professor Chochinov stated there is a link between acknowledging a patient's personhood and healthcare professionals' job satisfaction. Will he tell us more about this relationship and how it impacts on the healthcare professions? "Do no harm" is a central overriding concern of all doctors. How does the “wish to die” context, as he described it, impact on the medical profession?

Turning to Dr. Neal, conscientious objection has been mentioned by every witness before the committee in the context of retaining it within our legislation. She stated there is evidence that levels of conscientious objection to assisted dying are relatively high within the health professions. Why does she think that is the case? What concerns does she have regarding legislation on assisted suicide and how it can normalise its availability in society?

It will be essential to protect the freedom of conscientious objection should assisted suicide be legislated for. A failure in this regard would run a risk of losing healthcare workers who would pay the price of their job rather than breach their conscience on this matter. Is Dr. Neal aware of any examples of where legislation on this has led to problems among healthcare workers in other jurisdictions?

Dr. Mary Neal

On why there are high levels of conscientious objection to assisted dying, I think it just because of the cultural norm we have whereby the taking of life is wrong and this practice sits very close to that.

The British Medical Association, BMA, did a survey of doctors in 2020 and it was very notable that doctors were mostly opposed to being involved in assisted dying. Even those doctors who said they were not against a change in the law were against having to participate, and the specialisms that were most opposed were those that work with patients at the end of their lives, such as those in oncology, palliative care, geriatric medicine and general practice. There are high levels of objection in the healthcare professions. That study was just on doctors but it is important to bring in the views of other healthcare professionals as well.

I am not really aware of any examples where legislating for this has led to problems among healthcare workers. In the UK, we have not legislated for this yet but in respect of abortion, the conscience protection in the UK is quite limited. I am aware of healthcare workers who have left their jobs because they did not feel sufficiently protected, given the protection in the UK protects people only against having to be directly involved. In the case, therefore, of those whose roles would bring them into indirect involvement with the process, I know of people who have left their jobs in that context.

Professor Harvey Chochinov

There were many questions but I will try to answer some of them relatively briefly in order that we can at least touch on some of the key ideas. The Senator asked about intensive caring and what we can do to try to incorporate intensive caring more broadly. I am certainly doing everything I can to make this as universally available as possible. As I said, I published a paper in the Journal of Clinical Oncology and there are, at this point, 1,000 downloads per month. It was the topic of an invited lecture in honour of the Dame Cicely Saunders at King’s College London this year, so I am doing what I can to get the word out. Essentially, the ideas embedded in intensive caring are really at the heart of palliative care. The essence of intensive caring, in some ways, is old wine in a new bottle, but if that bottle makes it more attractive for up and coming learners to know the essence of palliative care is about these core principles and provide patients with affirmation and respect that are based on connectedness, that will serve palliative care well.

The Senator asked what we can do to maintain patient dignity, which is a very important question with respect to this issue of hastened death. The reason I embarked on studying the issue of dignity in the first instance is that some studies in the Benelux countries showed the reason patients had sought out assisted death more than any other reason, according to Dutch physicians who reported on this, was a lost sense of dignity. We have begun to study dignity and have been doing so for a number of decades, again, not from a vantage point of a political agenda or with a moral axe to grind. We are empiricists, so we have produced literature that shows dignity means different things to different people and if we are to support dignity, we need to do more than, for instance, simply trying to support or reinvigorate patient autonomy. Folks at Death With Dignity, for example, will say autonomy is the penultimate reason patients should be able to access assisted dying. We know maintaining dignity extends far beyond that.

At the risk of repeating myself, this is actually from a table in one of the papers that we published, if you look at what impacts patients' sense of dignity, according to patients, first and foremost is not being treated with respect or understanding, feeling a burden, feeling they no longer have control, feeling they have not made a meaningful or lasting contribution. The list goes on. That is in descending order.

An Cathaoirleach

Thank you doctor, and thank you Senator. Deputy Lahart is next.

Deputy John Lahart

Our witnesses are getting caught in the time trap that we all are subject to. We often do not appreciate their full meaning until they are in full flow. I thank them for all their contributions, some of which I watched online earlier. I have a question for the Irish College of General Practitioners. How many members are there?

Mr. Fintan Foy

I think it is at 4,200 members.

Deputy John Lahart

It was really quite a small sample, then, that took part in the survey.

Mr. Fintan Foy

It was relatively small in overall size but every opportunity was made available to members to participate.

Deputy John Lahart

Thank you for undertaking it but fewer than 100 participated in it. The age cohort of those was over 40 and predominantly rural. I do not know how to interpret that. However, like any poll, it was a useful snapshot of how GPs feel. One of the points mentioned in the feedback was GPs reporting that patient wishes were overruled by family members or ignored by hospitals. Could we have even a short example or case study of that?

Dr. Deirdre Collins

That is a clinical question so I might just come in before we move on to answer that. While the feedback you read from the engagement is there and that number is correct, it is part of a wider engagement with the membership. Like we said, we have already done some learning and education through our journals and conferences. That was left open for a significant length of time for people to give feedback. I think it is important for you to know that as well. Yes, that number did respond and took part very completely in it.

The second question relates to where somebody's wishes may be----

Deputy John Lahart

It is in the report, saying there were GPs who reported patients' wishes were overruled or ignored. I do not even want to know the wishes but just to give the committee a little bit of substance on what happens. How do GPs become aware if a patient's wish is just overruled by family and for what reasons? I would like a bit of context.

Dr. Deirdre Collins

The context is that as general practitioners, we generally care for the entire family and the community. There are many inputs that GPs would be aware of. As we always say to a patient, when you come in the door it is you and me. It is the interaction between the patient and the doctor. I think the responses the Deputy read there were the experiences of general practitioners who expressed those views, where they felt that a patient may have had one view of how their illness was managed, and the illness may be managed in a different way from how the patient had previously said. Does Dr. Quinlan want to come in on that?

Dr. Diarmuid Quinlan

I think it reflects the complexity of the area we are dealing with. We treat the patient but we are also closely engaged with the family. Families' views and wishes are certainly worth noting and listening to. We feel that the patient's views should take precedence. Sometimes the family's views are important to listen to and understand and to negotiate, then, with the patient about his or her preferred course of action. We deal with the entire family in their particular circumstances. That is reflected in the report. People find that on occasion different priorities take place within that family dynamic.

Deputy John Lahart

We could have a very long conversation just about that piece, about a patient's wishes and a family overruling it, possibly, and a GP going with a course of action based on what, I wonder. I do really wonder about the knowledge of the wider family, given the interaction time GPs have with people. It is not particularly long. I have also experienced GP interaction in my own family in those circumstances, where people were coming close to end of life. There is a rich vein there that we do not have time to tap into. I am not querying the ICGP or questioning the integrity of anything our guests have said.

Some of the findings have been very provocative. In respect of the other witnesses as well, these last few sessions have been where the substance of this issue is beginning to gain real traction for me as a member grappling with the issue. There are issues that were raised today regarding the burdensome piece, the dignity piece. I am really interested to see that there is a lot of research going on in this regard, so we have a lot of information available to us.

As a legislator, for me a big part of any report would be to emphasise that the State needs to bend over backwards and redouble and treble its efforts in relieving people. If the feeling of being burdensome is one of the reasons people want to end their life, the State has an obligation to reinforce its efforts and do whatever it can to ensure people do not fall into that position. As a legislator, however, I am also aware that the State has limited resources. We see it right across the medical system. If we could wave a magic wand, no one would feel loss of dignity because they would have all the supports, interventions, back-ups and love and care. Nor would they feel a burden if we had all the psychological and therapeutic supports in place that we could give them. I am just stating the facts as I see them and I wonder whether it is beyond the State to do all that. A big part of our report should be that the State needs to look at this. We are not doing enough in terms of people feeling a burden.

I am very taken with the conscientious objection piece. This is where the rubber hits the road when we make a law. Who is going to implement it and how do we protect them? We see how tricky that is. On the Canadian evidence, I am not saying it is progressive or regressive, it is what it is. I suspect that culturally and societally, they are in a different space from where we are. I am not commenting as to whether it is a better or a worse space. The evidence was that they are much more comfortable with clinical conversations about this among professionals. We need to look at that as well. I am very taken with the dignity piece and the fact there is more and more research going on, in parallel with a demand for end of life and assisted dying interventions. I am glad there is lots of work being done around the burden piece and the dignity piece. For me, that would be a big part of what we report on at the end of this.

An Cathaoirleach

Now we are into four-minute slots with two minutes for a question and two minutes for an answer. Deputy Troy is next, or is there somebody wanting to offer more in response to Deputy Lahart?

Dr. Diarmuid Quinlan

You mentioned that the GP involvement is maybe somewhat light. People who are otherwise fit and healthy may find their engagement with their GP is relatively episodic. However, for people with terminal illness and approaching end of life, there is an incremental increase in their GP engagement at every stage from diagnosis right through illness. General practitioners are very much front and centre in caring for people. We have a very substantial knowledge of the patient and their family in that time of their life.

Deputy Robert Troy

I thank our witnesses today. I had some thoughts when listening to the responses and the contributions earlier, which I will give in no particular order. In terms of the low number of responses vis-à-vis the size of the ICGP's membership, do you put that down to time pressure on your members, who are extremely busy professionals, or is it down to apathy towards this issue in itself? Following on what my colleague, Deputy Lahart, has said about some of your research, the primary reason for someone considering ending their life through assisted dying would be that they become burdensome in their old age. When we look at the level of palliative care that is available through the CHO regions, it varies quite significantly between regions.

To support what Deputy Lahart said, any report would have to underpin at least a consistency in the level of support available to patients.

On patient wishes versus family wishes, I have always been struck when going to visit someone in a nursing home that, not to generalise given that not everybody who is in a nursing home does not want to be there, the vast majority would prefer to be at home. Unfortunately, in the case of many people who are there, the family has come to the decision that the person is no longer fit or able to be in their home and needs 24-7 care. That is the family's wishes trumping the patient's wishes. Do the witnesses see a scenario where the family's wishes may trump a patient's wishes when it comes to end-of-life care? Going back to what people spoke about earlier, if this were to be introduced, it could be introduced in only a limited set of circumstances and, as everyone has said, with very strong parameters. Where do those parameters stop and how would we ensure, if it were introduced, that that those parameters would remain static? In other jurisdictions, it has been shown that once it is introduced, it will later be expanded and broadened.

To follow on from what Senator Ruane said about conscientious objection, it is paramount that if something is to be introduced, medical professionals must be able to stand back and away from this. Nevertheless, that gives rise at a later stage to that perhaps impacting on people for geographical reasons. I think of the introduction of the termination of pregnancy Act. There was a big report in a national newspaper showing Longford had the lowest number of GPs participating in and offering terminations of pregnancy, and it showed that was unfair to the people of Longford in comparison with, say, the people of Dublin. How do we ensure that if something is introduced, it will be broadly introduced throughout the country without compromising people's clear right to conscientious objection?

Dr. Deirdre Collins

I might start with the question about conscientious objection because we did not get an opportunity to answer members’ questions earlier. It is a clearcut answer that is under legislation. The Medical Council has a very clear guideline covering exactly the questions the Deputy asked about. In fact, it has a new set of guidelines that will be operational from January 2024, with an entire section that covers all the aspects that were mentioned earlier. It is quite straightforward. A doctor has to operate under the Medical Council guidelines, which recognise the right to conscientious objection and give instructions as to how that will play out for the doctor-patient relationship in terms of making the patient aware if you have an objection and ensuring they will have continuity of care and the transference of their information. I will not go through it all but it is all available to read.

I will ask Dr. Quinlan to answer the questions the Deputy raised about the clear concerns where someone feels like a burden and the patient's wishes versus those of the family. This all comes back to our comments about safeguarding.

Dr. Diarmuid Quinlan

The Deputy asked about the numbers participating in our survey. They were 90-minute focus groups, so it is a rich seam of information on views and perspectives, underpinned by a council workshop with more than 30 IGCP council members representing the views of their members, and we actively canvassed feedback from our members on these issues. While the numbers may appear small, it is a rich seam of information and a lot of insights were gained in that.

As for patients feeling burdensome and family members' views taking precedence, this comes back very much to safeguards.

We are here today to talk about safeguarding medical professionals. Safeguarding medical professionals and safeguarding patients are very similar, and we think it is really important to have very robust safeguards. In the event of legislation passing, the safeguards must protect patients at every aspect of the journey, from the initial conversation through to the review, the analysis and the comprehensive oversight. The safeguards are there to protect patients and professionals and it is good that we are here today discussing them.

Professor Harvey Chochinov

I might respond to the question on burden. Suffering is very much like cancer. If left unattended, it will grow, spread and can kill in the absence of good palliative care. Unfortunately, we know all too little about the quality of palliative care being provided to patients who receive MAID in Canada. The most recent Health Canada report stated that in about 40% of instances, patients have under a month of palliative care, and all we know about that is that it is the period in which they had some exposure to palliative care, but we really do not know what took place. If we think about someone who has a terminal illness or who, for months or years, has symptoms that are mounting without adequate supports or family, things like respite or the availability of good symptom management, patients begin to feel as though they are a burden. Family members buckle under the strain of looking after that individual. Good palliative care, and the early introduction thereof, can mitigate all that, including patients feeling like a burden to others, given they will have the kinds of supports they need. Feeling like a burden to others has been front and centre in almost every study on desire for death or the wish to have a hastened death. It is less important, in my mind, in the context of considerations regarding legislative criteria, but it is really important when it comes to making recommendations about the availability of the early introduction of palliative care.

Deputy Gino Kenny

My first questions are for the Irish College of General Practitioners. Do the representatives accept there are circumstances where modern medicine cannot ameliorate somebody's end-of-life circumstances? A small proportion of people will die very difficult deaths. In those circumstances, they should have a choice and a right to have a say in how they will die, although, obviously, that is what we are grappling with. Do the representatives accept there are circumstances where modern medicine cannot ameliorate suffering, especially in the context of end-of-life care?

Dr. Diarmuid Quinlan

The evidence is there are a small number of patients for whom the circumstances the Deputy describes may arise. For the majority of patients, with timely access to high-quality GP care and palliative care, many if not most of those symptoms can be alleviated, but there will be a small number for whom that does not apply.

Deputy Gino Kenny

Obviously, that can be very difficult at the end of a person’s life.

Professor Chochinov sounds like a very interesting man. Is he, in principle, against assisted dying?

Professor Harvey Chochinov

My objections are based entirely on clinical considerations and empirical evidence that I have both seen and been involved in generating over the past 30 years. That is the place where I come from.

Deputy Gino Kenny

In Canada, it was flagged that the legislation was not robust from the beginning.

If the legislation is not very strong and robust it can be challenged on every front. This is what has happened in Canada. It is up to us, as legislators, when we legislate for assisted dying that the legislation is as robust as possible to safeguard everybody, not only the person who will want to avail of assisted dying but also medical professionals, society and those in the vulnerable group. This is the cornerstone of the issue. Even if the legislation in Canada had stayed the way it was envisaged in 2016 would Professor Chochinov still not support the right of somebody who has a terrible diagnosis?

Professor Harvey Chochinov

One of the difficulties here is whether there are forms of suffering that are unyielding to any form of intervention. I remember a colleague in palliative care for several decades who said that he could count on one hand the number of people who may have met eligibility criteria. The problem with legislation is that although legislators can put down a policy, that policy is then implemented by healthcare practitioners. Healthcare practitioners exercise judgment. We have people in Canada who have specialised in medically aided dying. There are some people who have actually provided hundreds of patients medical aid in dying.

The other point I want to make is on who has irremediable suffering. How do we know whose suffering is irremediable until we expose them to and make available to them all that palliative care can provide? By way of illustration, we are grappling with the issue of what is irremediable suffering for somebody who has mental illness. The example I have suggested is that we consider what are the worst and most dire medical conditions that we can think of. Think about the biggest artery in the body rupturing in an aortic aneurysm. The likelihood of dying of an aortic aneurysm if unattended is approximately 100%. If someone arrives at an emergency department with a ruptured aortic aneurysm and has surgery the likelihood of survival is approximately 70%. At the time of arrival which patients have an irremediable rupture? We only know the answer to this question once the surgery is performed. Whose suffering can we not attend to? We will only know this after we have the opportunity to be attentive.

Years before legislation was initiated I looked after a man with a brain tumour. This was in a large US hospital. He wanted to die. I told him that it was not legal but I was prepared to be with him and to be attentive and try to find out who he was and what the sources of his suffering were. He would complain about the limitations of what this meant. One day I told him he was under no obligation for me to be there. He looked at me like I had gone stark raving mad and asked me whether I was crazy. He told me those conversations were the only thing keeping him going. It is difficult to identify in advance whose suffering is irremediable. If we are intent on trying to be attentive to suffering we need to address all of suffering, knowing that in the vast majority of instances we will be able to be effective.

Deputy Gino Kenny

That is subjective, obviously. We have discussed the subjectivity of those in this situation. I understand where Professor Chochinov is coming from. Does he still in principle not support somebody availing of assisted dying even the most restrictive circumstances?

An Cathaoirleach

Extremely briefly.

Deputy Gino Kenny

Extremely briefly.

An Cathaoirleach

Or I will die myself.

Professor Harvey Chochinov

I am sorry. It looks like I am gaining a reputation.

An Cathaoirleach

No, you are fine.

Professor Harvey Chochinov

I apologise for being too verbose. My objections are on medical grounds. If you are going to go this route I would encourage you to think about the larger issue of suffering. If you are intent on trying to address suffering, think about ways in which you can meet the needs of the vast majority of individuals.

An Cathaoirleach

I thank Professor Chochinov and Deputy Kenny.

Senator Lynn Ruane

I thank Dr. Collins for clarifying that should we end up with a system whereby we legislate for assisted dying that safeguards should be in place whereby somebody with a conscientious objection would be required to ensure whoever is seeking information has access to information. Perhaps other people would like to speak on this. We have reasonable people who will conscientiously object. However, reason sometimes can leave the room and emotion can set in. Somebody may have a very stark belief about assisted dying. How will this be monitored? How are other areas of conscientious objection monitored? We have spoken about coercion and it usually seems to be about society and family. I wonder about medical coercion when it comes to certain decisions about the end of people's lives. How do we ensure there is not just one doctor in a room who is having this conversation with a patient after which nobody would ever know that the patient requested a certain piece of information? It is about assessing, monitoring and evaluating how conscientious objection has worked.

I have enjoyed listening to Dr. Chochinov. Some of his contributions have reminded me of a book I read recently by Elisabeth Kübler-Ross on death and dying and the relationship between the end of life and hospice care or palliative care. I cannot seem to make the leap to see how palliative care is somehow in opposition to the potential for assisted dying if this is what someone wishes. I do not know why they must be in opposition to each other with regard to connection.

I have moved on in my thinking from suffering, which we have discussed loads. Now I have moved onto the idea of ritual. What palliative care cannot give people is the definitive moment in which they will die. It cannot give them the guarantee that the moment they die their family will make it to them in time. What palliative care cannot give people is perhaps the two, three or four days, or five or six weeks, for them to be able to do, enjoy, speak, think, or watch the sunset for the last time. There are other things beyond suffering. If someone knows they are going to die within an immediate distance, such as an arbitrary number of four or six months, the idea of them choosing that moment is that it gives them the potential for their own ritual and connection in that moment with those whom they love. What palliative care may not give is a sense of coherence if people have to be medicated for pain. Palliative care cannot guarantee coherency in the moment that people die with their loved ones around them. I do not know whether I am making a lot of sense.

An Cathaoirleach

You are.

Senator Lynn Ruane

Perhaps there are comments on this.

Dr. Edward Mathews

I will come in, if I can, on Senator Ruane's initial remarks on conscientious objection. I will confine myself to them and related issues. The limitations on conscientious objection for the professionals I represent are quite similar to those for the medical profession, in that people are entitled to their objection and then they must refer a person to a competent colleague to further the discussion about an issue. Dr. Neal made a point about the sharing of moral responsibility in these circumstances but that is an established paradigm in this jurisdiction.

Senator Ruane also made the point about a person's right to receive a service. Deputy Troy made the point about potential geographic blocks. There is an element about thinking about how, arising from conscientious objection issues, it would be actualised and the planning of services. Not to draw myself too close to Dr. Chockinov's contributions but if the committee were to go forward on an issue such as this there is something to be said for an established and identified service to ensure we avoid geographical inequity in the delivery of services, if this were the decision that was made.

Another point made by Senator Ruane was on how we police conscientious objection. To ensure people behave in a way that is professionally responsible and accountable we police conscientious objection through multidisciplinary teams. The point was made earlier that the first person an individual is likely to speak to is their general practitioner.

It may be the case that the nursing literature would report that the first person somebody will likely speak to will be a community or palliative care nurse or a nurse in an established residential service. There is an honesty kept within the peer-to-peer group. I will take the burden on our profession. If a nurse declined to speak with or refer somebody, the person would then speak with a physician and it would be policed in that way. The contrary would also be the case.

Regarding the remarks of Senator Ruane, I know she did not deny this and I would not misrepresent her but it is important to maintain conscientious objection. It exists more broadly in a constitutional paradigm and from a religious point of view, but there is also an established recognised constitutional right for a secularly held viewpoint which gives rise to a conscientious objection. That refers to not being forced to live a life and-or participate in matters which are adverse to one's conscience. We accept the limitation of that as an established principle of our ethical codes, which is that we refer persons to a competent colleague.

Senator Sharon Keogan

I will speak to the ICGP and the INMO. I remember having a conversation with my uncle, who happens to be a priest. We discussed the best way to die. He said it does not matter what road people take; death is never easy.

The ICGP has laid out a roadmap and outlined the engagement it has had with its members. Its representatives have laid out the various forums it has held and the questionnaires and surveys that have taken place. The ICGP did not survey a large number of people. Out of 4,500 members, 100 people have engaged in the survey. There has been minimal engagement with GPs. What steps can be taken to ensure palliative care provisions are not negatively impacted if assisted suicide is legislated for? I do not think we should assume that any future assisted suicide services would be GP led. I am not aware of any studies that have been undertaken in Ireland to ascertain what proportion of GPs would be willing to provide this service should it be legislated for. Will the witnesses comment on that?

I do not know why I did not receive the INMO presentation, but I wish to ask whether it has conducted surveys in the organisation on this issue. What were the figures? Nurses and midwives are very much the first point of contact for patients making requests about assisted suicide. How will they be trained to deal with clinical situations that could be difficult or are not possible to overcome? There can be significant difficulties with existing prognoses for illnesses. In terms of predicting how long somebody might live, whether it is weeks, months or years, in many cases it is impossible to give advice on that.

I refer to the risks of coercion, given the suboptimal availability of social work supports. Another issue is identifying suicidal patients presenting with a request for assisted suicide without acknowledging feeling suicidal. I see what is happening in Canada at the moment. A slippery slope started in 2016 and it is now an issue for people with mental health difficulties. I would appreciate it if the witnesses could address these questions.

Mr. Fintan Foy

I will address the first question, which was on the survey. As we have mentioned, it was one part of a fairly lengthy process.

Senator Sharon Keogan

I know that.

Mr. Fintan Foy

For example, the ethical articles were published in Forum, a journal which goes to 4,500 members. This is a journey, for want of a better word, and that was just one part of the process of engagement.

Dr. Diarmuid Quinlan

I thank the Senator for raising the issue of palliative care. We feel it is very important that access to high-quality palliative care be available to all patients in an equitable fashion right across the country. We need to support access to palliative care in general practice and specialist hospital care teams. We are on the same page there.

There is no legislation around assisted dying. We cannot make any assumptions as to where that might be delivered if legislation were written.

Dr. Edward Mathews

Our submission is not based on surveys. Obviously, we have discussed this issue with our executive council, which comprises a large group of nurses and midwives who are all practising and talking to their colleagues. The diversity of views is clear from that. We are not trying to ignore, or have we presented, a particular view. We are taking a fairly Jesuitical approach in that there are both ends of the spectrum and in between.

I will deal with the other issues raised by the Senator. I am sorry she did not receive our submission. We identified a requirement for training and support for nurses and midwives around the conducting of difficult conversations and the follow-on for those circumstances. The ubiquity of that or whether they would have to be more focused on different services would depend on what the legislative change was and where provision was made for certain services. I agree with the Senator that there be a requirement for training in those areas.

On the issue of coercion, one of the things that is in the minds of nurses and midwives, as it is in the minds of the public more generally, is the need to avoid coercive circumstances. In particular, and this is clear in the nursing literature and has caused difficulties for service provision and serious moral distress for professionals, there are issues where there has been a failure at the legislative stage to adequately deal with advance healthcare directives and whatever form of assisted decision-making exists. For example, there have been paradoxical situations where there have been particular interventions at particular times which were not expected. From a coercion point of view, that has to be dealt with. There also needs to be other safeguards. I am not sure I can make a contribution on suicidality. It is a matter of professional practice that would have to be engaged with on a case-by-case basis. I am not sure I can offer a particularly helpful reflection on that.

Deputy John Lahart

I have great respect for Senator Keogan, who talked about the slippery slope in Canada. A big bunch of Canadians do not regard it as a slippery slope; rather, they regard it as a logical conclusion. I am not making any judgment either way. Their society is at a different place, either before or after ours. From the evidence we gathered on both sides, the statistics were very interesting. My sense is that Ireland is not in that space. It might be in that space in 20 or 30 years' time, but not right now.

I take on board the patient dignity piece the witnesses have spoken about. Investment in palliative care will be a significant part of the report. From the literature, it would seem that if there were much more investment in palliative care, in particular research and findings, and then concrete responses to recommendations on the burdens people feel at a particular point in their lives, as well as dignity, there would not be as much conversation about the need for assisted dying. That has to be a part of the report.

On my next point, I would like to hear from whomever wishes to respond. I am conscious that some witnesses have not contributed since I have been here. From the evidence we have heard, there is very clearly physical pain that simply cannot be relieved. That was very clear from the testimony of a number of witnesses who came before the committee. There is no medication for some pain. As a committee, we have to take that on board.

The work of the committee is not for the vast majority. Is this not the key thing about what we are at? It is about that minority for whom medication, care and all the interventions simply do not cover, cope with or deal with. I see Dr. Mathews nodding and it has caught my eye. He has not been given an opportunity to respond although he has been looking to come in a few times and has not been seen.

Dr. Edward Mathews

Perhaps I need to work on my body language if that is the case as it was not a particular wish to come in. In nodding as Deputy Lahart was speaking I was acknowledging the diversity of views. It is not the position of our organisation that it is either wrong or right. There is great diversity in the views. When we conducted research in preparation for today I was most moved by was the level of work that has been done on the exposure of nurses to human suffering, the appropriateness of the response to this human suffering and the importance of palliative care. I began our submission by saying that one is not the same as the other. Notwithstanding any decision made arising from recommendations from this place to the other place, the nature of palliative care services must be improved. Accessibility must be improved. We must ensure that people have the services they need where they need them. Whether or not this is an adequate response and whether additional steps are required are matters of fact in some circumstances but also significant personal, moral and ethical viewpoints, in which there is great diversity. We are an organisation that is loyal to its members and our members hold diverse views on these points. I am trying to represent them fairly. Whatever decision is made, or whatever might be recommended, one thing is very clear: every member of our organisation would say that palliative care services require additional investment and they need to be improved.

Dr. Deirdre Collins

As general practitioners we fully acknowledge there are many ways in which we can help and care for patients all the way through their lives and there are times when we find this extremely difficult. I acknowledge the point made by Deputy Lahart that there is pain which is very difficult to control. This brings us back to the reason we are here, which is to speak about safeguards. Safeguards still have to govern these conversations, particularly with regard to capacity and oversight. In oversight and governance we are speaking about medical diagnosis, pathways, resourcing, reportage, review, moving into palliative care, as Deputy Lahart so well expressed, and protecting the patient-doctor relationship. This relationship goes both ways. We tend to say it as "doctor-patient" but it is equally the "patient-doctor" relationship.

An Cathaoirleach

I must finish now. I thank the witnesses online and in the room for their excellent engagement today. It is very important. This is a very serious job of work. The only way we can do our work is by listening to the witnesses and bringing their expertise to us.

Sitting suspended at 1.09 p.m. and resumed at 7.06 p.m.