Joint Committee on Assisted Dying debate -
Tuesday, 27 Jun 2023

Consent and Capacity: Discussion

An Cathaoirleach

Apologies have been received from Deputy Higgins and I thank her for that.

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Today we have engagement on the topic of consent and capacity in relation to assisted dying. I warmly welcome to the meeting Dr. Louise Campbell of the University of Galway and Mr. Finn Keyes, barrister at law. After both witnesses have given their opening statements, members will then ask questions. A member can ask an individual witness a question or address a question to the two witnesses. Before I invite Dr. Campbell to start, I thank her most sincerely. Her time is valuable and her expertise is important to us so we are grateful and thankful to her for being here. We look forward to her contribution and getting the benefit of her knowledge. I invite Dr. Campbell to give her opening statement.

Dr. Louise Campbell

I thank members for the opportunity to present to the committee; it is an honour. To provide medical assistance in dying is to end a human life. For proponents of legalising assisted dying, legitimate arguments can be put forward to justify the practice under certain circumstances; for opponents, no adequate justification can be provided. As with all controversial ethical questions, there is no objective or uncontested "right" answer to the question of whether it is better or best to legalise assisted dying or to uphold a blanket ban on the practice, even in the most difficult cases. There are ethical risks and losses associated with each option. Permitting medical assistance in dying risks allowing people who may be vulnerable because of illness, pain, fear, depression, disability, stigma, financial or family pressures or lack of access to appropriate care to shorten their lives in situations in which they may have made a different decision had a viable alternative been available to them. Conversely, prohibiting medical assistance in dying risks condemning people who are suffering in ways which are intolerable to them to the continuation of a life they do not want to live but are unable to end by themselves. This dissensus is incapable of resolution because it is rooted in a deep conflict of values: autonomy; sanctity of life; protection of the vulnerable; relief of suffering; and the integrity of the medical profession. What legislators considering implementing a new regulatory system can do is ensure balanced and principled scrutiny of the arguments put forward on each side of the debate in order to assess their validity and determine whether they are consonant with available data from jurisdictions in which the practice is legal.

The purpose of regulating medical assistance in dying is twofold: first, to ensure fair and equitable access to the intervention by those who need it and, second, to ensure that anyone who is potentially at risk as a result of the availability of the intervention is protected from harm. Legislation and policy must be underpinned by these ethical imperatives.

Eligibility criteria specify requirements for accessing assisted dying in jurisdictions in which it is legal. Although, as members will be aware, these criteria vary from country to country, sometimes significantly. Eligibility criteria in respect of assisted dying are a reflection of what is considered permissible or justifiable within a given society once a legislature has done the work of balancing the various rights and interests at play. Arguably, the single most important question for any legislature considering the regulation of assisted dying is whether adequate safeguards can be put in place to ensure legalisation does not place a disproportionate burden on or pose undue risk to people who may be considered vulnerable should such an intervention be made widely available. Safeguards, which include second medical opinions, statutory waiting periods and reporting review and oversight mechanisms, promote accountability, facilitate due process and ensure that the regulatory system is functioning as it should.

Informed consent is the voluntary, uncoerced authorisation of a medical intervention by a person who has capacity to make a decision on the proposed intervention and has received adequate information to enable her to make the decision. Decision-making capacity, one component of informed consent, is the ability to understand information relevant to a decision, retain and use the information in the process of weighing options against one another and communicate the decision. Along with voluntariness and irremediability, capacity is a key eligibility criteria in all jurisdictions in which medical assistance in dying is legal. Assessing decision-making capacity is a complex task and there is some evidence of knowledge gaps among clinician with regard to capacity assessment.

At the heart of the liberal medical legal tradition is the idealised concept of a rational, independent self that is capable of making its reasons and motivations known to itself. Real world situations, however, are not so neat, particularly where chronic or terminal illness, loss of function, dependence on others or disability are at issue. A person’s capacity may be affected by pain, illness, anxiety or exhaustion, among other things. Emerging research indicates that values and emotions have a significant role to play in decision-making, although this is not reflected in our current conception of decision-making capacity. A person may meet the cognitive requirements for capacity, outlined earlier, but her evaluation of the options available to her may be distorted by emotional factors, thereby undermining the voluntariness of her decision. It is known that the perception of being a burden is associated with anxiety, depressive symptoms, hopeless and a desire for death. This may arise from physical, psychosocial or existential distress and may significantly influence a person’s decision-making. While the presence of depressive symptoms in itself is not automatically correlated with lack of capacity, it is vitally important that screening for comorbid mental illness plays a central role in assessing both capacity and voluntariness in determining eligibility for assisted dying.

The voluntariness of the decision to request assistance in dying needs to be tested in tandem with the assessment of capacity. Careful screening for undue influence, which is the actual or perceived pressure arising from a person’s situation or environment, should be part of this process.

As in other areas of medicine, the rigorousness of any capacity assessment should be proportionate to the gravity of the decision in question. Requests for assistance in dying may mask the existence of unmet needs. Systemic or structural inequality and the impact of the interaction of demographic factors such as age, disability, linguistic ability, socioeconomic profile and gender, among others, may exacerbate a person’s vulnerability. Situational factors such as poverty, lack of social supports or inadequate access to appropriate care, can exacerbate biological characteristics such as disease severity or limitations on functioning. If a person with a progressive, terminal illness chooses to request assisted dying to avoid suffering in a situation in which they would have chosen palliative treatment had it been available, that person is not making a real choice. Any society considering the regulation of assisted dying has an ethical obligation to ensure that any citizen requesting assistance in dying has had an opportunity to access existing therapeutic options, with assistance in dying a last resort after other options have failed. However, denying access to assistance in dying because of a societal failure to make high-quality palliative care more accessible is unethical because it condemns some people to a worse death on their own terms.

Legislative frameworks for the regulation of assisted dying must include provision for tailored, expert-driven training for doctors and other health professionals in assessing capacity, determining eligibility and identifying compromised voluntariness or undue influence.

Mandated legal training for doctors involved in the provision of assisted dying services and support guidance and training for the entire health and disability workforce have played a critical role in the recent implementation of assisted dying in other jurisdictions.

Debate about the permissibility of legalising assisted dying marks a significant shift in societal mores as deliberately ending a patient’s life at her request in order to relieve suffering comes to be seen as a treatment option, transforming the landscape of health and social care at the end of life. This shift will be embraced by some members of society, including healthcare professionals, and strenuously resisted by others. While legalisation would indicate greater recognition of the value of autonomy in end-of-life decision-making, how we talk about assisted dying and the language we use to define eligibility criteria have significant implications for people living with chronic illness and disability. If a decision is made to introduce a provision for assisted dying into Irish law, it must be done with the greatest attention to any potential exacerbation of existing inequalities, including those created by stigma and exclusion. At the same time, it must not be presumed that people living with disability have no interest in assisted dying. It is vital the voices of disability activists and members of the disability community have a central place in this discussion.

Mr. Finn Keyes

I thank the Cathaoirleach and members for the invitation to assist in the difficult deliberations on this sensitive issue. I propose to outline the manner in which the courts have dealt with ethical dilemmas that arise in end-of-life care under the current legal regime and to suggest what lessons might be drawn from the court’s resolution of these dilemmas. In particular, I will discuss consent to treatment, the distinction between acts and omissions and the doctrine of double effect, insofar as they have been used by the courts.

On consent to treatment, it is the right of any competent adult to refuse any and all medical treatment for any reason or none, even if death may result. This flows from the constitutional guarantee of the autonomy and bodily integrity of every person. A person who considers that they may at a future point lose the capacity to make such a decision may make an advance healthcare directive, now provided for under Part 8 of the Assisted Decision-Making (Capacity) Act 2015, stipulating their will and preferences in relation to a future treatment decision, including a refusal of treatment that would prolong life. However, there are things to which a person under the current legal regime cannot consent. A person cannot consent to being seriously harmed or killed; therefore, it is no defence to a murder charge or a charge pursuant to section 2(2) of the 1993 Act to say that the person consented to having their life taken.

The circumstances in which a court is required to make decisions about assisted dying arise in cases where the person lacks capacity to make decisions about their care at the end of life. That is, where a person lacks capacity, it may fall to the court to act as a substitute decision-maker, which historically has been under the High Court’s wardship jurisdiction, but going forward will be under the regime established by the assisted decision-making Act.

In cases where the courts have had to act in such a role, they have drawn on two important legal-ethical constructs to distinguish between permissible end-of-life care that may hasten death, on one hand, and impermissible killing, on the other. These are the act-omission distinction and the doctrine of double effect.

On the act-omission distinction or the active-passive distinction, an important principle of criminal law that has particularly weighty relevance in the context of assisted dying is the distinction between acts and omissions. As a general rule, subject to important exceptions, a person is only criminally liable in respect of positive acts and not in respect of omissions. Thus, it is a crime to start a fire but it is not a crime to refuse to put out a fire started by another.

In light of this distinction, the courts have consistently held that a refusal on the part of medical practitioners to continue treatment where the patient cannot obtain any practical benefit from it constitutes an “omission to struggle”, and hence not a positive act for the purpose of the statutory prohibition on assisted dying. The phrase “omission to struggle” entered the legal lexicon following a decision of the House of Lords in Airedale NHS Trust v Bland. That case concerned a 17-year-old victim of the Hillsborough disaster, Anthony Bland, who suffered a hypoxic brain injury in the crush at the stadium, and was left in a permanent vegetative state.

After several years in this condition, his medical team, with the support of his parents, went to court seeking orders to allow them to discontinue life-sustaining treatment, including nasogastric feeding. Lord Goff outlined the centrality of the act-omission distinction to the law in this area and stated that "to act is to cross the Rubicon which runs between on the one hand the care of the living patient and on the other hand euthanasia - actively causing his death to avoid or to end his suffering". In doing so, the House of Lords quoted from a Professor Glanville Williams, a criminal law expert, who stated that when a doctor switches off a life support machine it "is in substance not an act but an omission to struggle" and that "the omission is not a breach of duty by the doctor because he is not obliged to continue in a hopeless case".

A very similar rationale was employed by the Irish Supreme Court in the Re a Ward of Court judgment from the mid-1990s, in which it similarly held that the withdrawal of artificial life-sustaining treatment would not amount to unlawful killing, partly on the basis that such a withdrawal would not amount to a positive act but rather to an omission to struggle in a hopeless case. This of course places a weighty responsibility on the medical practitioner to determine at what point life is no longer in the best interests of the patient.

However, it is important to reflect on what exactly the courts were characterising as an omission in these cases, namely, the action of withdrawing life-sustaining treatment, in the form of turning off a ventilation machine or removing nasogastric feeding. The rationale of these cases allows for a somewhat dubious expansion of the criminal law concept of an omission to facilitate certain humane end-of-life practices and to protect doctors from criminal liability. While characterising the act of withdrawing ongoing treatment as an omission is certainly dubious, it appears to be tolerated as a necessary fiction under the current legal regime.

Moving to the doctrine of double effect, this plays a central role in the cases in this area. It can be defined as a distinction between consequences that are intended and consequences which are foreseen but not necessarily intended. Thus, according to the principle of double effect, it is permissible to do an act intending a good effect, albeit in the full knowledge that it will also result in a second, bad effect. The doctrine, which originated in the work of Thomas Aquinas, has many uses in moral philosophy but has played a particularly important role in end-of-life decision-making. In this context, the doctrine of double effect can justify the administering of palliative care, such as pain relief, that is likely to hasten death if the primary motivating purpose of that treatment is to alleviate suffering and not to cause the death of the patient. By contrast, a doctor who administered the same dose of pain-relieving medication with the intent of hastening death would, under the current legal regime, act impermissibly.

In a recent major decision on end-of-life decision-making, In the Matter of JJ, the Supreme Court placed express emphasis on the doctrine of double effect in justifying orders that would allow doctors to withdraw respiratory support from a young boy who had suffered a catastrophic brain injury. The court quoted approvingly from the evidence of a consultant in paediatric palliative medicine in the case, who outlined the nature of palliative care in this context and stated that:

The intent is never to shorten life. The goal of palliative care is to live well, but it also encompasses the potential to die well. So, the intent is never to hasten death or shorten life. The intent is only to relieve suffering.

Interestingly, while the court placed a great deal of emphasis on the doctrine of double effect, it also stated that it is a less than fully satisfactory basis for dividing the boundary between lawful and unlawful end-of-life care. The court stated: "It is possible to argue that the distinction is no longer feasible, or should no longer be maintained, but so long as the law retains an absolute prohibition on euthanasia, it remains a critical and valid distinction both for medicine and the law". Thus, the court appeared to accept that the doctrine of double effect is necessary under the current legal regime but expressed doubts about its philosophical effectiveness.

In these opening remarks, I have sought to illustrate the very fine distinctions that have been drawn by the courts within the current legal regime to accommodate certain humane end-of-life practices and to protect medical practitioners from criminal liability. These fine distinctions are open to critique and challenge but they are likely to remain a feature of the law for as long as the current legal framework in respect of assisted dying is maintained.

I thank members for their attention and I welcome any questions.

An Cathaoirleach

I thank Mr. Keyes for his contribution. I call Deputy Daly.

Deputy Pa Daly

I thank the witnesses for coming in and supplying us with their opening statements in advance.

I was interested in the doctrine of double effect Mr. Keyes described. I have three questions. The first relates to the vulnerability Dr. Campbell outlined and the need for valid medical second opinions, oversight and time limits. She mentioned the knowledge gaps among clinicians and, in the same paragraph, also mentioned emerging research on the significant role played by values and emotions. Is it her view that this is very amorphous and not very fixed? Is it the case that we are developing all the time? I have some concerns about how a person's capacity is affected. What qualifications should people have if they are to assess capacity? Dr. Campbell mentioned mandatory training for health professionals. Can a GP give such an assessment or should it be a psychiatrist who can screen for certain things? I worked as a solicitor for a number of years. I was not trained in screening but sometimes, when someone would come to the office, there would be a family member outside the door. Some members of the family who had rights of entitlement under the Succession Act 1965 were being completely excluded. That set alarm bells ringing straight away. Will Dr. Campbell expand slightly on the actual or perceived pressure she mentioned? Does she have recommendations on how to handle the need for mandatory training and screening in an emerging area in which there are gaps in our knowledge?

My second question is on palliative care. How important does Dr. Campbell think that is? I have no doubt that we will hear from palliative care practitioners in later sessions. Does she think there is enough knowledge of palliative care? I am from County Kerry and there is an excellent palliative care section in University Hospital Kerry. The section has been encroached upon by other sections, including oncology. The palliative care section wants to get these back out so that it can continuing providing that excellent service. However, such services might not be as good in some other areas. Dr. Campbell mentioned existing inequalities and the lack of services. How important does she believe this area is?

If she will bear with me, I will ask my final question so that I will not have to come back in. Dr. Andrea Mulligan appeared before us last week and she spoke about the dangers of a cultural shift that could arise from this. Dr. Campbell touched on this. I am talking about considering death as a treatment option and how that could be embraced by others, as she said using such strong words. Those are my questions. Perhaps she could give me some time on them.

Dr. Louise Campbell

I thank the Deputy for those questions. They really go to the heart of the ethical changes in legalising assisted dying as I see them. There is a great deal to unpack there so I hope I can do justice to the questions he asked. If I do not, I ask him to come back to me. I will address them in order.

I hope I have understood his first question correctly. I will make a distinction as regards screening to ensure that a decision is voluntary. There is all sorts of language around this. Terms like "settled", "well considered" and "voluntary" are used with regard to a decision to request assistance in dying. The issue is that the decision must be uncoerced and free from external pressures. At the most malign end of the spectrum, these may be overt or covert pressures from family or from other interested parties. They may also include those in question perceiving themselves as a burden as they see the impact their illness is having longitudinally on their family or on the people caring for them.

They feel that they should not be a burden to their family any longer and that they have some responsibility. There is a range of things in between and a significant grey area. Screening for undue influence or a lack of voluntariness is extremely complex. This is one of the most difficult things to achieve in practice. Legislation would have to be directed specifically towards how the challenge of determining voluntariness could be met so that nobody is assisted to die when it is not his or her own free, autonomous choice.

The voluntariness component of informed consent is only one of three components. Being informed and having understood the information relevant to the decision is also vitally important. People who do not get all the information, including sufficient information about what treatments, palliative care services, mobile palliative care services or even telehealth services might be available to them therapeutically, have the voluntariness of their decision a little compromised because their weighing up of the pros and cons of each available option is skewed slightly by the lack of information. Does that point make sense? That would also compromise voluntariness in a different way from the way that external pressure would compromise voluntariness.

The Deputy mentioned my reference to values and emotions. Another thing that compromises voluntariness is what is important to a person and how the person feels about it. If people feel they do not want to live a life that they feel is at odds with values they have always embraced, such as independence, autonomy or mobility, then that will have an emotional effect on them. That will be built into the way they weigh and assess the options available to them when making a decision to, to give a hypothetical example, request assisted dying. That relates directly to the third component of capacity as it is assessed in current practice, namely, the using of adequate information, which ideally people have understood, to weigh up the pros and cons of each of the options available to them in order to make a decision. That applies to any treatment but in this case is specifically about assisted dying.

All sorts of challenges are involved in looking at or screening for whether a decision is truly voluntary and how voluntariness interacts with capacity in this assessment of eligibility for assisted dying. Voluntariness and capacity are distinct components of informed consent and they need to be screened for separately. The greater the worry about whether a person has capacity, the greater the onus on the assessor to rigorously determine that capacity is present. The burden of proof is on the assessor.

With regard to training, there is literature in the clinical ethics domain suggesting that healthcare professionals assessing capacity do not get enough training in the area of how to assess capacity. Anecdotally, I hear that the mini-mental state examination is still used to assess capacity when the gold standard is the MacArthur treatment competence assessment tool, developed in 1998 by Grisso and Appelbaum. The MacArthur tool aligns with current legal definitions of capacity post the publication of the Convention on the Rights of Persons with Disabilities and with our capacity legislation.

I am probably taking too long to answer that question, which was only the first of the Deputy's questions.

Mr. Finn Keyes

Legally speaking, psychiatrists should be there to sign off. There was a case before the European Court of Human Rights, Haas v. Switzerland, where Mr. Haas sought to challenge the Swiss law on the basis that it imposed an undue burden on him accessing assisted dying because it required him to be assessed by a psychiatrist before he could access lethal injection.

The European Court of Human Rights said that was a proportionate interference with his right to privacy because it was a necessary state objective to provide safeguards. It said Article 2 of the convention, which is the right to life, requires contracting states, such as Ireland, to establish that they are capable of ensuring that a decision to end someone's life does indeed correspond to the free wish of the individual concerned. That would be very likely be the case in Article 40.3 of the Constitution as well. These safeguards are not just prudentially advisable but are also likely to be legally and constitutionally required.

Senator Mary Seery Kearney

I thank the witnesses very much. I am going to extend beyond that question. Last week I arrived at a point where I was saying that this is constitutionally permissible for us, subject to proportionality and safeguards. We come into that space of asking how we as legislators ensure we are sensitised and educated enough from a safeguard perspective, and I believe we are getting there this morning, to be able to know whether a safeguard is adequate when considering this. For a just society, we have to be prepared to have the courage to legislate even for very small minorities in our State. While this law may be acted upon by a very small minority, it affects the majority. It affects the entire population and it affects issues such as consent if the definition of "consent" is changed. I read Mr. Keyes's article about the implications for children with interest. Does consent change? I am talking about the voluntariness of the decision and all of that. It is not just about the overt coercion. Those people are more easily identified than when there is a sense of a person being a burden or out of loving their family and a genuine place of care perceives themselves as being a burden. How do we put in a safeguard that deals with the self-esteem of an individual in a very difficult health situation? Then there are implications for medical ethics and the mores of society.

What I worry about is in the context of change. Once there is a choice on the table, does that change the pivotal point in our society of the value of life? It is implicit within this that suddenly we are changing it. How do we ensure we are sensitised? I would like to hear more from the witnesses as a follow-up to the other questions. There are some things we could do with regard to beneficiaries such as putting a delay on probate. Mechanics could be put in place if we wanted to deal with overt coercion, where the person does not get to make the choice but if it is exercised and there is that belief we can thereafter put a delay on beneficiaries or bar them. There are things like that. How do we capture that piece of an individual in this incredibly vulnerably scene operating from a place of love and care for their family and fear? How do we touch on that and how do we keep that sensitivity to the point where we are actually changing the mores of our society?

Mr. Finn Keyes

On whether consent has changed, the answer is "No". Consent is not defined under the Assisted Decision-Making (Capacity) Act. It remains as it was. What has changed is the definition of "capacity" and how we assess capacity. Under the new Act, we assess it on a functional basis, so people have capacity to make certain decisions and not others and they have capacity to make certain decisions at different times and not others as opposed to the previous all-or-nothing approach where if someone was deemed to not have capacity the High Court, wardship then stepped in and exercised a fairly paternalistic jurisdiction. There is now an attempt to draw out a person's will and preferences from them insofar as is possible and to allow them to make decisions by themselves. A functional assessment of capacity would include how big the decision is. That goes into, for instance, their ability to weigh the information and to make a determined choice on it.

The framework for assessing capacity already accounts for how serious and weighty the decision is. Whether the committee would want to make further safeguards regarding how that is assessed is another matter. Where a person lacks capacity entirely also needs to be considered. The question of how we make decisions about assisted dying where a person lacks capacity entirely is an important one. Does it fall to a court and what do we decide then? These are some of the issues that need to be addressed.

The Senator mentioned putting a delay on probate and restrictions in that regard. Under the assisted decision-making Act, there are restrictions on people who can act as decision making assistants, co-decision makers and decision making representatives. These are people who either assist people in making particular decisions or make decisions on their behalf by virtue of court order. There are restrictions in the Act that such a person cannot have been convicted of offences of dishonesty and cannot be a financial beneficiary in the event of the person's death. Safeguards exist and perhaps the committee might wish to draw upon those in assessing what further safeguards might be required. Dr. Campbell might have further thoughts on that.

Dr. Louise Campbell

I would like to go back to the Senator's question on the shift in societal mores because Deputy Daly addressed this issue as well. I was quite interested in the subject. I went to the Netherlands in 2018 to talk to various stakeholders about assisted dying to see what was going on there. It is the most transparent system in the world, without any shadow of a doubt. I am not saying it is infallible or that abuses do not happen but it is extremely transparent regarding documentation, review, reporting and all of those kinds of procedural safeguards. I spoke to two people. One had been an advocate of euthanasia and a member of the regional euthanasia review committees for ten years. The other was a current advocate of euthanasia. Both of them told me, independently of one another, that there had been a shift in societal mores since the legalisation of euthanasia in 2002 in the Netherlands. The current advocate of euthanasia said that euthanasia in the Netherlands had always been an intervention of last resort. It has been intended specifically to operate on compassionate grounds when no alternative was available to relieve the person's suffering.

Senator Mary Seery Kearney

I am sorry to interrupt for a second. Euthanasia and assisted dying, as I understand it, are very distinct things. I just want to make sure that we are staying on the same page.

Dr. Louise Campbell

"Medical assistance in dying" is the term I would prefer to use, because it covers both physician-assisted dying where the doctor or healthcare practitioner in some jurisdictions initiates the action. I am sorry; it is the other way around. Euthanasia is an intervention in which the doctor administers the treatment to end the person's life. In some cases, it is not a doctor.

Senator Mary Seery Kearney

That is not what we are talking about here according to my understanding.

Dr. Louise Campbell

However, assisted dying is where a prescription is provided by the doctor. After a process of assessment has been completed and the person is deemed eligible and the safeguards are deemed to be adequate within the law, a prescription is then provided to the person and he or she will either fill the prescription and self-administer the medication or choose not to do so. Both are covered under the term "medical assistance in dying". In the dying with dignity legislation, there is also provision for administration, so that is my mistake. We are talking about the administration by the person themselves having received the prescription from a medical practitioner.

Senator Mary Seery Kearney

A person-initiated process.

Dr. Louise Campbell

What happens most of the time in the Netherlands is euthanasia because they generally regard that as less susceptible to error or to errors of delivery or any kind of technical problem. The vast majority of cases of medical assistance in dying in the Netherlands are euthanasia but I was just talking about what is actually the case there regarding the societal shift.

I thank the Senator for putting me back on track.

I will call what is happening in the Netherlands medical assistance in dying for the purposes of this point. Both people I spoke to said there was a shift from assistance in dying being a treatment of last resort administered on purely compassionate grounds because there was no other way of relieving the person's suffering at that person's request, to being seen as something that somebody had a right to as part of their entitlement as an autonomous person capable of determining the timing and manner of their own death. That is a significant shift. I was also told that the idea of medical assistance in dying has become more normalised as a treatment at end of life. This can be seen in the titles of legislation around the world. It is becoming more normalised and that is increasing in jurisdictions where it is legal. I agree that is a significant shift.

The Senator is correct that if we want to be a just society that includes a multiplicity of different perspectives on this issue, we also need to include the perspectives of people who feel they are living lives that are absolutely at odds with who they are and what they consider important, and are condemned to do so, when we allow other people to request the withdrawal of treatment in very similar circumstances.

Deputy Robert Troy

I thank both witnesses. I will come back to Dr. Campbell on her intervention regarding her visit to the Netherlands in 2018. She met two people, one of whom had been an advocate - she stressed the words "had been" - and one of whom is a current advocate. Did the person who was originally an advocate change their thought process regarding the legalisation of assisted dying? Was there a reason or rationale for the change in that thought process? She can correct me if I am wrong but she seemed to suggest that when assisted dying was introduced, it was introduced as an intervention of last resort but how it is viewed culturally and societally now has changed significantly compared with when the original change was made.

Even if we were to make any legislative change, and what we are debating today possibly gets to the very heart of the issue, it is all very well for somebody who has the capacity because it is fairly black and white. For somebody who does not have the capacity, however, it raises a pile of questions as regards knowing that the will of said person is actually being fulfilled. Again, she can correct me if I am wrong, but Dr. Campbell seemed to suggest in reply to Deputy Daly that there was anecdotal evidence - she might even have cited a medical journal article - of the lack of due diligence in certain instances as regards capacity. That issue would certainly be a worry.

The other issue we are discussing is that of undue influence. Many people look to the potential of family members to put undue influence on somebody for a variety of reasons, primarily succession rights or financial reasons. I was struck by what was said about the wider undue influences, or the situational factors, including people in a certain socioeconomic setting, such as poverty, and maybe even geographical reasons. I am currently working with a family who are going through an end-of-life situation and are looking for palliative care. The person concerned is not in my constituency but their family members are. I am struck by the difference in the palliative care offering in one region compared with the other.

I am interested in the witnesses' views on a substandard - perhaps that is the wrong word - care plan or perhaps lack of a comprehensive care plan having an undue influence.

The ward of court system has been replaced under the Assisted Decision-Making (Capacity) Act 2015. Did either of the witnesses see the "Prime Time Investigates" programme that was broadcast a few months ago, in which some families raised serious concerns about the ward of court process and vehemently opposed that process being imposed on their family members? They did not get it right in certain instances. There are reasons for that. How can we be sure that the Assisted Decision-Making (Capacity) Act will protect people who need to be protected. I am thinking in particular of people who have mental health issues. As we know, people's mental health can involve a transient state of mind in certain instances. Are there any specific provisions in the Assisted Decision-Making (Capacity) Act to protect people with mental health difficulties?

Mr. Finn Keyes

As regards protecting people who do not have capacity and how we fulfil their will and preferences, how it has worked until now in end-of-life decisions made by courts is that courts have exercised a best interests test. The court will decide what it thinks is in the best interests of people in the particular circumstances, that is, whether continued life would be in their best interests and so forth. The courts sometimes averred to what a particular person would have wanted should that person end up in such a position and whether that was ascertainable from statements made before the person lost capacity. However, overall, a more paternalistic best interests test was used. That changed under the Assisted Decision-Making (Capacity) Act which now provides that an intervener, the definition of which includes a court, will "give effect, in so far as is practicable, to the past and present will and preferences of the relevant person, in so far as that will and those preferences are reasonably ascertainable." That means the intervener will try to decide what this particular person would want if able to express a view.

In court cases, that can sometimes give rise to a somewhat strange and surreal discussion where we are trying to construct what people, who may never have mentioned and possibly never considered what they would want should they end up in this position, would have wanted. A similar regime would likely apply to a person lacking capacity if the Government were to introduce some form of assisted dying. The committee might want to consider whether it should be made more explicit whether a substitute decision of the person or a more paternalistic best interests test should be used.

On whether the Assisted Decision-Making (Capacity) Act contains protections for people with mental health difficulties, I am not aware whether they are directed specifically at mental health issues. However, the entire tenor of the approach of the Assisted Decision-Making (Capacity) Act - the functional approach to capacity and the recognition that people can come in and out of having capacity - is an important change which is intended to recognise the exact circumstances the Deputy referred to, that is, the idea that people can come in and out of non-capacitous states of mind with regard to mental health issues. The Act is designed around that idea and also that people can lose capacity in respect of some decisions and can regain it with regard to some decisions and not others. The whole Act is designed to try to accommodate that phenomenon. I hope that is of assistance.

Dr. Louise Campbell

I have two things to say which I will address in reverse order.

Substitute decision-making has been replaced or superseded by supported decision-making in the Assisted Decision-Making Capacity Act. This means the idea of a third party substituting their judgment of what is best or better for a given individual is being phased out as non-compliant with the UN Convention on the Rights of Persons with Disabilities. It is a really important question. Whereas the Assisted Decision-Making Capacity Act obligates us to comply with the UNCRPD by making every effort to ensure people who may be losing capacity or may have borderline capacity are supported as much as possible in decision-making, particularly in healthcare, this raises enormous problems in the area of assisted dying. It raises similar problems in the area of withdrawing or withholding medical treatment but it raises greater problems in the realm of assisted dying. Borderline capacity where capacity is in doubt should actually be an exclusion criterion. It should withhold eligibility. This is my own view but it is based on my reading of the literature. If we cannot say definitively that somebody has capacity, that would not render them eligible within a fair and equitable legal regime to be approved for assistance in dying if we are worried about their capacity, since capacity is a threshold criterion in every jurisdiction.

Bearing that in mind, the Netherlands and Belgium have a provision for an advance euthanasia directives where somebody, in advance of losing capacity, can request euthanasia at a specific point but there have been a myriad of problems. The cases they put forward illustrate this in regard to how these advance euthanasia directives are actually implemented in practice. It is extremely difficult. Advance directives raise a host of ethical and clinical questions under normal circumstances, if one can call any circumstances in healthcare normal, whereas advance healthcare directives raise even more issues because the person no longer has capacity at the time of administration. Enormous caution has to be exercised regarding any suspicion that somebody might lack capacity related to a request for assisted dying.

I did not mean to suggest to Deputy Troy that doctors were not doing due diligence around the assessment of capacity. What the literature shows, and it is known, is that capacity assessment is not a black and white science. It is very complex and controversial. If it is accepted that emotions and feelings, for instance, affect the way somebody weighs up information and balances the pros and cons of alternatives in coming to a decision, then it poses a challenge for people who approach capacity assessment as this purely cognitive exercise where all someone needs to do is to establish that somebody has understood the information and can repeat it back to them and retain it for long enough to weigh up their choices. There is a huge emotional investment in some of these choices that we are talking about, not least because of the issue of burden or of a feeling of being burdensome to somebody else. This is where the voluntariness component of informed consent and the capacity requirement dovetail. The questions of whether the decision is voluntary and whether the person has capacity and how they interact are extremely complex and require a lot of attention. Healthcare practitioners across the board actually, not just those in respect of assisted dying, need further education and training in looking at these issues.

Deputy Gino Kenny

Good morning to our witnesses. This probably gets to the heart of the issue of assisted dying. I am always taken by the three Cs of assisted dying, namely capacity, consent and a conversant mind that may choose to avail of assisted dying. They are at the heart of the issue.

Putting adequate safeguards in place is equally important. My first question relates to coercion. Some people have concerns that somebody could be coerced into making a decision that is not of his or her making. That is fundamental to putting safeguards in place. Is there any evidence that this happened? Has it happened, for example, in Oregon where assisted dying has been legislated for over the last 25 years? Is there any evidence that those three Cs have been breached on a wide scale?

Dr. Louise Campbell

Can Deputy Kenny please clarify that the third C relates to a conversant mind?

Deputy Gino Kenny

It refers to a conversant adult.

Dr. Louise Campbell

It is, therefore, somebody aged over 18 who has capacity.

Deputy Gino Kenny

Yes.

Dr. Louise Campbell

I have not read every single piece of literature that is available in English on this. Oregon, like other jurisdictions in which assisted dying is legal, produces annual reports that provide figures, including general demographic data. They are not very long compared with the case of the Netherlands. I do not know if Deputy Kenny has had a chance to look at these. The regional euthanasia review committees in the Netherlands prepare extremely detailed reports in four languages. They give examples of cases that fall under the three criteria of straightforward, non-straightforward, and not meeting due care. Those are the three categories of cases. The third category obviously relates to the most serious cases. One of these cases came before the courts in the Netherlands a couple of years ago. What Oregon does not do and what the Netherlands does very well is outline in detail what is worrisome about the non-straightforward cases and why they are not straightforward. Maybe they did not meet procedural due care criteria or maybe they did not meet the substantive due care criteria. One of the substantive due care criteria is ensuring there are no external influences or internal limitations on the person who is making the decision. Internal limitations may include borderline capacity or worries about capacity. There should also be no external influence.

Deputy Gino Kenny

Is it the case that the person can be refused if there is doubt?

Dr. Louise Campbell

Completely.

Deputy Gino Kenny

In New Zealand, which introduced assisted dying two years ago, a number of cases were refused on the basis that they did not fit the criteria.

Dr. Louise Campbell

A legislature can decide, as Victoria did in 2017, for example, to put in place extremely stringent legislation. There are 68 safeguards in place, according to one of the parliamentary discussions.

Deputy Gino Kenny

Is that in Victoria?

Dr. Louise Campbell

Yes. Its legislation is very long. There are five steps to go through in the process between the application, the first review and the final approval. There is a second application and there is also a review. There are five stages. It is very strict and some proponents of assisted dying feel it is too stringent. The other worry is that it might place a disproportionate burden on people who in any case might have difficulty accessing the interventions. One does not want to put too many hurdles in place because that can arbitrarily disadvantage other people. This is the balancing line that has to be drawn. I am not aware of any discussion of coercion or undue influence in the reported documentation from any jurisdiction. That does not mean it does not exist. It means, as Senator Seery Kearney suggested, that it would be extremely difficult to establish. That is not the kind of information that will be forthcoming in a statutory documentation of these procedures. However, case studies, other forms of literature or information that is available on the web - which I obviously would not go to as my primary source of information - might provide some illustration of what is going on beyond the scenes. It is impossible to determine that.

Deputy Gino Kenny

Obviously, the person has to be trusted because trust in the person is sometimes at the heart of the debate.

It has to be the person's decision; it cannot be anybody else's.

The assisted decision-making legislation has been talked about for a long time. In the witnesses' opinion, has dealing with assisted-dying legislation become less or more complicated as a result of it?

Mr. Finn Keyes

We do not know the full implications of the 2015 Act because it commenced only on 26 April of this year. On the question of how it might interact with assisted-dying provisions, some issues arise in regard to advanced healthcare directives, as mentioned by Dr. Campbell. Apparently, advanced healthcare directives under the 2015 Act allow a person, if he or she is sufficiently clear, to refuse life-prolonging treatment. A question that has been adverted to concerns whether the legislation could be amended to include, for instance, doctor-initiated assisted dying. When Dr. Mulligan was before the committee giving evidence, she alluded to people who might lose the capacity to make the decision but who might be content in their non-capacitative state, such as someone with dementia. There is something to be considered in this regard.

Substitute decision-making of courts has to be considered regarding persons who lack capacity for whom engaging in assisted dying is proposed. Currently, a decision-making representative – a person empowered under the Act to make healthcare decisions on behalf of the person who has appointed him or her – cannot consent, on the appointer’s behalf, to the withdrawal of life-sustaining treatment. One has to go to the High Court to get an order for the removal of life-sustaining treatment. Would that be applied in the same way in regard to assisted dying? The answer is that it almost certainly would be a necessary safeguard for someone lacking capacity and in respect of whom it is proposed to make a decision to end his or her life. Those are some of the interactions but the legislation is newly commenced. We will see how it operates in practice.

An Cathaoirleach

I thank everyone very much. We will now move on to Deputy Costello.

Deputy Patrick Costello

I thank the witnesses for their thought-provoking and excellent evidence and statements. I have many questions but I am not sure I will get through them all in the first round. There might be a second round, but we will see.

Consider the nature of consent, which must be free, informed and voluntary and require the necessary capacity to make a decision. Let me dig into the structure of vulnerability and unmet needs. The issue of unmet needs was also raised by the Irish Human Rights and Equality Commission. One of my questions concerns the point at which unmet needs become associated with coercion and whether this can be assessed. Is it the same for everybody in every circumstance? I would assume not. Is it something we can properly assess? How do we build in a safeguard? Can we actually do so?

There has been some talk about wills, the Succession Act and such measures. Where there is a will, an independent witness gives evidence as to capacity. Is there an argument for requiring an independent witness, perhaps one outside the medical sphere? Acknowledging that the parallel with making a will is incomplete, I am referring to someone other than the treating medical doctor who would act as an independent witness who could also attest to capacity.

On some of the consent issues, Mr. Keyes started by saying that we cannot consent to being hurt. I have a load of questions round that but the most fundamental question is would that become moot in the face of legislative change? If we bring in legislation, would it fundamentally change that position? With DPP. v. Brown it was my understanding that it was the criminal and fraudulent nature of it that eradicated the consent. Mr. Keyes mentioned R. v. Brown in his submission but a lot of people would say that would probably be decided differently because it is more about the House of Lords' squeamishness as to what was going on, rather than the actual issue of consent. Consider also R. v. Wilson, where branding was allowed and the interesting judgment in R. v. Stein where the court said that such things were permissible so long as one could withdraw consent. This then raises the question whereby the law seems a little bit more fluid here, but does the legislative change render it moot? Then there is the withdrawal of consent piece. How important is the ability to withdraw consent to that free, informed capacity to give consent? This then goes into the interaction of the Assisted Decision-Making (Capacity) Act and the other judgments in the courts that we have been dealing with. The courts have set up the difference between acts and omission. I would like to dig into this. If I have made in advance directive asking "Please give me X,Y or Z life saving treatment", then I have lost capacity and say "Now I do not want this" but my previous directive says to give it to me, will the courts step in? One is then into a situation of looking at a positive act to save my life and I am saying "No" based on my current incapacitous position, despite my previous capacitous position where I said "Give it to me." Obviously, this is stepping in to provide treatment to save a life as opposed to stepping in to provide treatment to end a life. There is a similar logic there: will we see the courts saying "Well you said you would sign it when you had capacity". Given that interaction, is it realistic that we would see the courts stepping in on that to make demands of that - if this makes sense - and in a way overriding the withdrawal of consent that happened after the person had lost capacity? There is a lot there. Good luck to Mr. Keyes getting through that in the two minutes left. I apologise.

Mr. Finn Keyes

I thank Deputy Costello. On the consent issue, the answer is "Yes". I believe that a change in the law providing for assisted dying will necessarily displace that common law position, as Dr. Campbell said, in relation to being seriously harmed or to being killed. In an abundance of caution one could amend section 3 of the Non-Fatal Offences against the Person Act to specify. That would probably be an abundance of caution. That is the answer to that.

The second question is more complicated, at least as far as it is directed to me. It is more complicated with regard to advance healthcare directives. Advance healthcare directives only apply for as long as the person lacks capacity. Once he or she regains capacity then it is essentially rendered moot. If a person does not have capacity, then yes the advance healthcare directive made when the person may have had capacity, does presumptively override what they are saying when they lack capacity. In terms of how that operates, under the Act a person is appointed called an advance healthcare designate or delegate. This is the person one appoints to essentially interpret the advance healthcare directive and to apply it on your behalf. That person would be the person applying it and trying to determine a balance between the person's current stated wishes and what the person has said before.

If one was to get into a later stage and look at decisions related to end of life, one would go to the High Court. The High Court retains jurisdiction relating to end-of-life matters under the Assisted Decision-Making (Capacity) Act and all the rest comes under the Circuit Court.

At that stage, the court is required to have regard to the advanced healthcare directive, AHD. I do not want to speak too directly but I think the court would be able to override it. However, the court is supposed to give high deference to the AHD because consent given with capacity is the high-water mark here. Insofar as the person has, at a certain point, with capacity, made the decision, that should be given the highest amount of respect and that should be the position adhered to as far as is possible. I hope that is of assistance.

Dr. Louise Campbell

I will add a corollary to that. There is no provision in the Assisted Decision-Making (Capacity) Act 2015 for positive requests for treatment. As in any other area of medical treatment, no medical professional is obligated to provide treatment that they deem burdensome or that is not of benefit. The advanced healthcare directive protects that professional autonomy. That clarifies what was said about requesting something.

Deputy Patrick Costello

Would there not still be a situation where there could be a lifesaving intervention that would be beneficial for someone who has dementia, for example, that could significantly lengthen their life if done? This person might have given consent when they were in capacity and are now saying "No", but there might still be a beneficiary there. Are we looking at a situation, for example, where the courts could step in and say that must be respected?

Dr. Louise Campbell

I would suggest that there would be no compulsion on doctors. The person's values, prior statement and advanced wishes need to be taken into account and respected, where possible, but there is no obligation on doctors to comply unless it is a refusal of treatment.

Senator Annie Hoey

I thank the witnesses; this has been really interesting. Is it possible for us to get to a point of truly voluntary decisions when we would nearly have to live in a utopia for that to be so? I truly mean this in the least facetious way possible. Is that possible without living in a utopian society where there is no class division or poverty and where every single person has access to the exact same services? That might not be possible and I do not know that it is possible to get to that fully equal level for every human being and that would take out the fact that we all just have different thought processes. Is it possible, therefore, for us to get to a stage, either with legislation or with this topic, where we can have people whose decisions are truly voluntary? Or is there a prerequisite there that is simply impossible for us to get to? I will have second and third follow-up questions to that question as well.

Dr. Louise Campbell

That is a fantastic question as well. As Senator Hoey suggested, we do not live in an optimal world but just because we do not live in an optimal world that should not mean we deny certain people, under certain circumstances, opportunities to die a better death on their terms, when we have the opportunity to enable that, as they would otherwise have to endure suffering. That is one point.

We talk about societal mores and shifts. One thing the Assisted Decision-Making (Capacity) Act 2015 and proposals to legalise assisted dying have in common is that they highlight the importance of autonomy. They highlight the importance of the person's values in enabling them to make a decision which is then respected by healthcare practitioners if they have capacity to make that decision and if they make it voluntarily. It is probably trickier to ensure the voluntariness criterion is met than it is the capacity criterion. I would imagine there will be no method of screening that would be completely fail-safe. However, we could say that in any human endeavour, and I do not mean that facetiously.

If healthcare practitioners assessing capacity and voluntariness can be trained specifically within specific parameters to watch out for red flags under those two headings, and those two headings can be kept separate because they are actually separate, although they dovetail in other ways, and to do due diligence as part of the safeguarding process, we can achieve better results or better outcomes both in enabling people who need this intervention to avail of it and protecting those who are vulnerable or made more vulnerable if they were to be allowed to avail of it. I do not know if that answers the question. I do not think there is a foolproof solution but training and experience over time will allow healthcare professionals to spot and identify undue influence where it is detectable. It is not always going to be detectable and that is the fallibility of any human system. I hope that answers the Senator's question.

Senator Annie Hoey

Yes. As we trudge towards this ideal utopia, does Dr. Campbell think it is possible for us to create a system that would function? We do not have to reach the entirely flawless zenith of humanity, so to speak, but we can do this as we currently are. We are discussing mental health and the influence that may have and then the influence of the person looking at that distressed person. It is possibly inevitable that when someone is in this distressed state that there is an element of depression, although this may not be the case for everyone. Can we look at this possible future regimen? Not everyone with mental health issues or depression is at the tail end of it. There are different levels. I have seen this in people who have contacted me. A person revealed that they had issues with their mortgage because they disclosed that they took a low level anti-depressant to keep themselves well and to stop them from having mental health difficulties. That is affecting the person's mortgage because the company is saying that the person is a life risk. There are many situations where mental health issues should not disadvantage a person. Many people with mental health issues are affirmative and active. How could those two could be tied together?

My second question has been asked previously. It is to do with someone accompanying a person to Switzerland or somewhere else. Currently under Irish law, is assisting someone to die by suicide against the law? It has not been tested so I would be interested in the witnesses' opinion on this.

Mr. Finn Keyes

"Yes" is the answer. Insofar as the jurisdictional point arises, taking someone to the airport would come under "aids, abets, counsels or procures" in section 2(2) of the Criminal Law (Suicide) Act 1993.

Senator Rónán Mullen

I welcome the witnesses and thank them for their input. To avoid confusion, I want to clarify the language that I will use here. As a committee, we have not yet decided what we mean by assisted dying. I am going to rely on the distinction made in Canada where "medically assisted dying" comports euthanasia, but also comports what I will term "assisted suicide". This is where the person is assisted but that the primary and main intervention is not taken by the doctor or other person who is bringing about the death of the person. I will direct most of my questions to Dr. Campbell because it is clear that she takes a position on this, perhaps more so than Mr. Keyes. She said that if we want a just society and we allow other people to request the withdrawal of treatment, which is the normal understanding of the courts and of our society at the moment, this is not euthanasia in any shape or form; it is a respect for human dignity and somehow it flows from this that we have to concede in some cases then to people's direct request to be killed so to speak or have their lives directly ended.

Somehow, it flows from that that we have to concede in some cases to people's direct request to be killed, so to speak, to have their lives directly ended. I am surprised that Dr. Campbell does not allow for a greater obvious philosophical distinction between the two. Dr. Campbell mentioned autonomy in her paper but has she considered that it is not just a case of what happens, if it is possible to put necessary safeguards in place and if they work, but that once this is changed and society accepts it is okay to allow some people and not others to have their lives ended, it changes the situation? It will not just change for the person in that situation who might avail of the new regime but overall and in a wider context in society, including people's ability to struggle, and we all have to struggle one way or another through life, the attitudes of people as a whole will change. It is not just a question of whether there are abuses but that we will change the way in which people see themselves, particularly if they find themselves in situations of terminal illness, although not just that.

Dr. Louise Campbell

On what has changed, I certainly see there are philosophical but primarily clinical differences between acceding to a request to withdraw treatment on the one hand and acceding to a request to terminate a life on the other. I will leave that until later because it will take up some time to address it.

What has changed is that we are a more pluralistic society in Ireland now. That means we can tolerate value differences and value conflicts that might not have been tolerated when there was a more dominant or hegemonic ideology. We now see that people have legitimate value-based disagreements regarding certain seminal issues. As a society, we must allow for that. How this plays out in the debate about assisted dying is that we see now that there is no universal or objective definition of suffering. One person does not have grounds, or any legitimate reason, for interpreting another person's description of his or her suffering on his or her own terms. We have to allow people the right to say that on their terms, in accordance with their values, and as somebody who has thought about what is important to them, they find the suffering they are enduring unbearable.

Senator Rónán Mullen

Does it follow from that, therefore, that Dr. Campbell does not support any restrictions by reference to terminal illness or prognosis since you cannot interpret another person's suffering? Is she saying, if you take a purely autonomous view, you just have to take that person's word for it?

Dr. Louise Campbell

Does the Senator mean if I take a perspective based on the value of their autonomy?

Senator Rónán Mullen

If Dr. Campbell is saying it is all subjective, in that no value judgment can be made about another person's suffering, is she not also saying there is no basis on which we could credibly deny anybody a request to end their life?

Dr. Louise Campbell

That is not what happens in practice, respectfully. If the Senator looks at the reports I mentioned, primarily from the Netherlands, it will be seen how evaluations are made, and information can also be got about the criteria on the basis of which requests for euthanasia are rejected. Such requests are rejected because there are problems, and the attending physician, and second consulted physician or psychiatrist, believe there may be treatment that may relieve the person's suffering. They can say to the patient, with reason, there are treatments that have not been tried and which should be tried before a request for assistance in dying is made as a last resort.

Senator Rónán Mullen

I submit that involves a value judgment on somebody else's suffering. As Dr. Campbell mentioned the Netherlands-----

Dr. Louise Campbell

It is a clinical judgment.

Senator Rónán Mullen

Dr. Campbell talked about the transparency in the Netherlands but there was an appalling case, which Dr. Campbell referenced but did not detail, where a woman who had requested assisted dying well in advance was sedated to prevent her from objecting and, when she struggled, it was basically forced.

Is that not the reason people have to be worried that this actually changes everything? Once you decide that certain lives can be taken with the permission of the State, is it possible to have safeguards? Do you not inevitably face up to a situation where it slips into people's thinking that it is okay to end a person's life in one way or another?

Dr. Louise Campbell

At their request, to relieve their suffering.

Senator Rónán Mullen

In that case it was not at the person's request because it was well after it. It was based on the husband's statement that she decided-----

Dr. Louise Campbell

I would like to correct that, if the Senator does not mind. She had an advance euthanasia directive dated at least five years previously and conversations had been ongoing up until the point at which she lost capacity. She was not sedated to prevent her from objecting. She was sedated as the first stage in the process of delivering euthanasia.

Senator Rónán Mullen

The view of the medical panel reviewing the case was that she was, and also that there was an attempted struggle-----

Dr. Louise Campbell

There was.

Senator Rónán Mullen

-----and that she was overwhelmed. Dr. Campbell also mentioned Victoria. I looked up Victoria. I think that was done in 2017, which is relatively recent. Even between 2019 and 2020, the number of euthanasia or assisted suicide cases - I forget which - almost doubled from about 47 to 94. I understand as well that at least at one point it was not even required to have a second opinion as to the diagnosis of terminal illness and an end of life within the certain period required. While Dr. Campbell uses reassuring language about legislation being "extremely stringent", and undoubtedly she could enumerate what is intended to be stringent or what is presented as stringent, the fact remains that this relatively recent provision resulted in increases in the availing of it and shortcomings, such as the non-requirement for a second opinion about diagnosis and prognosis, were revealed. That does not sound like "extremely stringent" to me.

An Cathaoirleach

As I am extremely conscious of Senators who have to leave and who have questions, I ask Dr. Campbell to give a brief reply.

Dr. Louise Campbell

There are always going to be errors and in the case of new legislation, there will be teething problems. I am not aware of the case the Senator has mentioned specifically. With regard to the Victorian legislation, it is a pattern globally that when provision is made in law for something that was not allowed previously, it will increase in prevalence. The eyes of the world were on Victoria, as they are on the other Australian states now because these jurisdictions are the most recent to legalise assisted dying. People have been waiting for this provision to come into law to avail of it. It is natural that a practice will increase in prevalence when it is legalised. I do not see that that is an ethical concern as such. It has happened in every jurisdiction.

Senator Rónán Mullen

It might be worry for a lot of people. When Dr. Campbell says "extremely stringent", that is language that seems characterised to reassure but I have given an example of at least one shortcoming in the legislation that I think would have a lot of people worried.

An Cathaoirleach

I thank the Senator. I call Senator Ruane.

Senator Lynn Ruane

I thank the witnesses. It is very hard not to get caught up in concepts. There are these constant dilemmas and contradictions and all these things to try to work out, which shows how complex some of these conversations are. I am getting stuck a little on capacity and consent. The same understanding of it does not seem to apply when we move into different scenarios. Do consent and capacity have a universal understanding or are they movable things that move when we consider different circumstances? This is the example I am trying to grapple with in my head. Say we have a regulated system for assisted dying and I have an advance healthcare directive. I then lose capacity and withdraw my wish for assisted dying under that non-capacitous state. It seems that, at that stage of an advance healthcare directive, there is potential for the previous consent around the person's wishes to be somewhat withdrawn.

Then we come to advanced healthcare directives and other areas, such as in mental health. If I am an individual who says that if I end of up in a state of psychosis or have schizophrenia in the future, I do not want electric shock treatment but then, when I am in some state relating to my mental health, start insisting that I want electric shock treatment, would my previous lack of consent hold up or could a doctor decide it was in my best interests to give me electric shock treatment? I am trying to think of a positive act such as the insertion of treatment into a person's life, not only a withdrawal of treatment, so that it becomes a positive and not passive act. Is the whole area of consent and capacity really about individuals and their wishes at all? Does it become about something else, such as people's ability or willingness to engage with the previous consent? I am not sure whether I am asking a question. It is more that I am struggling to understand when it applies.

For example, in relation to the principle of double effect, of the criteria listed in footnote 13 of Mr. Keyes's submission, the only criterion someone who wanted to engage in assisted dying would not meet is the second one, that "the agent may not positively will the bad effect but may merely permit it". That might be the only criterion when it comes to assisted dying. We can look at palliative care and the refusal of treatment, but on assisted dying and a person's will, does it stand up when we look at the example Thomas Aquinas used, which was self-defence? What if I am defending myself and it is my will in that moment for the other person to die and for me to save myself? It does not make sense that, in the case of assisted dying, when having something administered or prescribed the will changes but it does not change in other scenarios, for example, in the cases of self-defence or the doctrine of double effect. The question is whether some of these things stand up. When I read about such matters as alleviating suffering, people's best interests and so on, it seems as though it is all a play on language because we do not have regulation. The court system uses plays on language to get around scenarios to be able to let someone die by switching off a machine. None of them are concrete principles.

I have another question about an act. What is an act? Are we saying that doing nothing is not an act? That does not make sense. It is an act. The distinction between positive and passive assistance in dying is irrelevant. What are the witnesses' thoughts about that? Doing nothing is doing something, unless the person is incapacitated and cannot do anything. That is different. Why is it different if a person makes a decision in a moment to withdraw something or to give something, as regards describing them as an act, when both result in the same thing, namely, death?

Mr. Finn Keyes

The distinctions I drew in my opening statement would largely fall away in utility in the event that an assisted dying regime were to be enacted. These distinctions are, as I have described them, necessary fictions in the current framework to allow for certain more humane end-of-life practices. As the Senator pointed out, while I described them as humane end-of-life practices, there is an aspect in which they are not humane, for instance, in the Anthony Bland case I spoke about.

In that case the court, while drawing out this acts and omissions distinction, said openly that it did not understand why it was allowed, as a court, for nasogastric feeding and ventilation to be withdrawn - or allowing just nasogastric feeding in his case - which is essentially allowing him to starve to death and could be a very painful process, but it was not allowed to permit the administering of a relatively painless lethal injection. These might be very fine distinctions but if you are someone is concerned about the sanctity of life and protection of the vulnerable you might say these are essential distinctions within the current framework that you might support to serve the competing values and interests at stake. As the Senator said, these anomalies create very real costs such as in the case of allowing someone to potentially starve to death but not being allowed to kill them relatively painlessly. On the other hand, it might be said that these anomalies are necessary for the balancing of the competing values at stake. What we strive for in law is not always absolute logical coherence and consistency above all else but sometimes working solutions that best balance rights and interests. With these very fine distinctions the question is really whether they are worth the costs in terms of this current regime.

Dr. Louise Campbell

I absolutely agreed with the Senator that the decision to do nothing is a decision and has an outcome, like the outcome of any action. The doctrine of double effect and the acts and omissions distinction were necessary fictions when Catholic doctrine collided with the necessities of modern healthcare. They have served their useful purpose and there is a lot of philosophical rumbling around these issues but we do not need them any more. They are a legacy.

Senator Fiona O'Loughlin

I thank both of our witnesses for the dialogue and for their opening statements. They have given the committee a lot of food for thought. It is obviously a very complex situation and there is so much to think about in so many different ways. I have a few questions that I will put together before seeking a response. I was struck by what Dr. Campbell said regarding denying access to assistance in dying because of a societal failure to make high-quality palliative care more accessible being unethical because it condemns some people to a worse death on their own terms. Obviously it is clear, and it goes back to a point made by my colleague, Deputy Troy, that we need to have the highest standard of palliative care. In thinking then about some people having a worse death, how we live is very important but I believe that how we die is very important as well.

Switzerland has come up a few times in the debate. Active euthanasia is illegal in Switzerland but assisted suicide, or supplying the means, is not. We are all relatively familiar with Dignitas, which helps people to die with dignity. We all know of cases where people outside of Switzerland went for this type of intervention. What does Dr. Campbell think of a company such as Dignitas? Does she think that is a type of model? I do not know much how Dignitas looks at informed consent and the other issues the committee needs to examine in respect of capacity and so on. I would like to hear Dr. Campbell's view on that.

Mr. Keyes spent quite a bit of time talking about the difference between a positive act and omission. Do we need more legislation to bring about a consistent approach between the two? Will he comment on intent? How do we define that intent from the doctor's point of view? Does the Assisted Decision-Making Capacity Act help in defining those?

I have one question for both witnesses. We have spoken about the adequate information capacity and the voluntary aspect. On the adequate information that people need to be supplied with to consider them informed, if, for example, a particular medical diagnosis was a criterion for assisted dying to be requested but there was a possibility of a misdiagnosis, how would we deal with that?

The area around mental health greatly concerns me. In most cases, we see there has to be a terminal diagnosis, generally within six months. How do we deal with ongoing mental health situations which are not terminal in that somebody will not die from that particular diagnosis? I would like the witnesses to address those concerns.

Dr. Louise Campbell

I honestly do not know how to respond to Senator O'Loughlin's question about Dignitas. If it is an organisation that does what it says on the tin, which is to provide a compassionate intervention at the end of life for people who have no other alternatives, or do not see themselves as having an alternative, then I do not necessarily see anything misguided or wrong with that intention. I do not know what its financial management involves, what the financial bottom line is, or whether it makes any profit from that. I presume it sustains itself.

Senator Fiona O'Loughlin

It is not for profit.

Dr. Louise Campbell

It is not for profit, so its motive is entirely compassionate. I would not have a disagreement with that but I guess the larger question is whether countries which are reluctant to legislate for assistance in dying are exporting the problem to Switzerland and what that says about their squeamishness on the issue. That would be the question I would like to investigate further. I do not know if I have anything helpful to say.

If I may, I will address the issue of mental health. There are two jurisdictions, soon to be three because Canada will join them in 2024, which make provision for assisted dying to be made available to people whose sole medical condition is a mental illness. They are Belgium and the Netherlands. This is extremely controversial and is causing much debate in Canada, as members can imagine. There is a growing body of literature asking whether we are discriminating against people with mental illness who have tried treatment for 20 years and failed to have any measure of success with that treatment. Are we discriminating against those people by not making an intervention available to them to alleviate their suffering when we are possibly prepared to make that same intervention available to people whose suffering is entirely physical, when that mental suffering could be just as great, if not greater, than the physical suffering, with similar psychological sequelae? There is an important question to be asked and an enormous amount of controversy. It is very contested. I do not see that entirely prohibiting assistance in dying when mental illness is involved is entirely ethical either. It is a very difficult question.

Mr. Finn Keyes

I thank Senator O'Loughlin. In response to her questions directed to me, on the positive act and omission distinction, as I mentioned to Senator Ruane with regard to its relevance to assisted dying, I think the provision of assisted dying would cause the usefulness of that to fall away in this context. It would continue to play a role in criminal law more broadly but that is possibly beyond the scope of what the committee will consider. I am not sure if the change itself would be the necessary change, if the committee was to determine that.

The question about intent is good. It is always extremely difficult to determine intent. It involves looking inside someone's mind. Criminal trials are directed towards very elaborate procedures to try to define what is in someone's mind. It can only be evidenced by external acts, what they say and so on. That is a constant problem.

Deputy Pa Daly

I have two questions. Most of the questions I asked earlier have been dealt with in the responses to other questions. On the question in relation to GPs and psychiatrists and the screening, is there anything else that the witnesses would like to add on that? Perhaps Dr. Campbell will comment also on how important it is to have palliative care. Does Dr. Campbell believe there is enough knowledge and information out there around what is actually carried out? Will Mr. Keyes clarify the point on giving somebody a lift to the airport? It was asked a few weeks ago but I believe there was a different response. Does Mr. Keyes believe that somebody could be prosecuted for driving somebody to the airport? Was that the answer he gave? Could he speak about that?

Mr. Finn Keyes

Within the terms of the Act I believe they would be liable but it is very unlikely they would be prosecuted by the Director of Public Prosecutions. Technically speaking, driving somebody to the airport in order for that person to go to Dignitas would amount to aiding, abetting, counselling or procuring assisted suicide in the current regime. It is unlikely the DPP would take the decision to prosecute it.

Dr. Louise Campbell

The question of screening is fundamentally important. Again, screening for capacity and screening for voluntary assisted dying are separate but also kind of conjoined. Training for doctors and for mandatory second professional opinions, are vitally important. Provisions are made in existing legislation for these mechanisms to be in place. They are generally followed. There may be exceptions because there are exceptions to everything, as Senator Mullen has pointed out, but I am actually not aware of that case.

With regard to what is being screened for and what it is that health practitioners are expected to identify or look for in the screening process, that would be a matter for a multidisciplinary consultative panel to discuss, across psychiatry, mental health, general practice and other health and social care professions, including social work and palliative care. That would really have to be discussed with the relevant stakeholders and perhaps some patient advocacy groups or disability activist groups as well. I do not know if that covers exactly what the Deputy was asking.

Deputy Pa Daly

On an individual basis, does Dr. Campbell have any recommendations or any ideas?

Dr. Louise Campbell

There is some literature emerging that provides actual questions that would be asked of the person to try to get as much information out of the person about why he or she is requesting assisted dying. These would be sample questions about how long the person has been thinking about it and what are the reasons for requesting assisted dying. It would be a very detailed interview plan that would aim to pick out any red flags or areas requiring further scrutiny on an individual case-by-case basis. Obviously, this would be specific to whatever the individual circumstances are or whatever the conversation would be. Templates would be provided and there certainly would be some training provided for people interviewing prospective-----

Deputy Pa Daly

Which people does Dr. Campbell believe should be interviewing?

Dr. Louise Campbell

That would be people with the relevant medical expertise. Existing legislation makes provision that necessitates for people with expertise in the relevant conditions the person who is requesting assisted dying is suffering from, and then an independent medical opinion from somebody unconnected with the person who has provided the first medical opinion. All of these mechanisms would be in place to act as safeguards in existing legislation. Whether one considers these to be adequate is a matter for further discussion but there are mechanisms in place that aim to ensure as much objectivity as possible in the assessment.

There is a small body of literature looking at inadequacies in the assessment process but this is not necessarily an indication that the system or regime itself does not work. It is an indication that there may be concerns about how it works and there may be room for improvement with regard to how it works.

An Cathaoirleach

I thank Dr. Campbell very much. I call Senator Seery Kearney.

Senator Mary Seery Kearney

I thank Dr. Campbell for that. I will come back to a couple of issues, the first of which is that in our current regime, we have the possibility that I can refuse intervention and nutrition. Last week, I explored the possibility that I could put in an advanced healthcare directive. However, Dr. Mulligan told me that, yes, in theoretical law, it could be done by getting medical practitioners to actually exercise it in a circumstance where I no longer had capacity, which is probably very unlikely.

We move on now to that positive act. If we are legislating, presumably then we could look at where an advanced healthcare directive will facilitate that positive act to assist dying for the individual. That engages two things for me, one of which comes back to Senator Ruane's question around a person who is under the care of a particular medical team in which there are individuals who will refuse to facilitate assisted dying. I assume that we are also going to have to legislate for the possibility of medical practitioners who, in an exercise of their own conscience, will refuse to be practitioners who will facilitate assisted dying. Therefore, if a person is under the care of that team in the process of his or her diagnosis, is there a mechanism? Are there other experiences of that where a person gets to move to another team? How does that happen?

The next issue for me would be that capacity perhaps changes with diagnosis. I am sitting here today with no diagnosis and nothing wrong, thankfully, but I have a view of what I might like to do or not do in certain circumstances. Faced with the reality, that might be very different. That context changes capacity. In the questions in the sort of interviews that go on, does it allow for those changes and the subtlety that it might change again? At the beginning of a diagnosis, I might say that when I reach a certain point, at that point, if we say it is within the parameters of six months from death or whatever medical criteria we put down, then I want that exercised. That may change, however. That perspective may change because it may well be that that is my child's wedding and I want to be there within that timeframe and I just want to be cared for enough to be able to get there. How do we manage that? Is it a repeated assessment? Should we be considering managing that?

Dr. Louise Campbell

In respect of advance healthcare directives specifically.

Senator Mary Seery Kearney

Specifically, yes-----

Dr. Louise Campbell

Can I just say-----

Senator Mary Seery Kearney

-----given that we have established that all things can be set aside, really.

Dr. Louise Campbell

I completely see the theoretical problem and clinical problem with advance healthcare directives. However, the importance of an advance healthcare directive is that it focuses all stakeholders - family, healthcare providers and everybody - on what the patient's wishes would have been or were, given that he or she took the time to devise this document and draw it up.

That person-centred focus is a vitally important component of any legislation making provision for advance healthcare directives. It is very unlikely that a jurisdiction considering even discussing the potential or possible legalisation of assisted dying will make provision in that legislation for advance euthanasia directives, given that it is so uncommon everywhere else in the world.

Belgium and the Netherlands are outliers in this regard. The Netherlands has the longest tradition in the world of legalised assisted dying if we go back to the 1970s when it was decriminalised in certain contexts. I can see that it is a worry but I think it is an ancillary worry in terms of the present discussion.

The question of whether an advanced health care directive is implementable or can be implemented in practice depends on how much advice and information the directive-maker got at the beginning of the process, whether he or she has a designated healthcare representative to help professionals interpret the directive if there is any ambiguity, and how well educated those clinicians interpreting the directive are. Those factors are vital. There is a right to conscientious objection in all jurisdictions in which the practice is legal. The question is whether the conscientious objector has an ethical or legal obligation to refer the person requesting assisted dying to somebody who will assist him or her. We have seen this in our recent legislation on the termination of pregnancy. I hope that addresses the Senator's question.

Deputy Gino Kenny

Today has been extremely informative. There was an opinion poll in the Business Post this Sunday that indicated the overwhelming majority of respondents would support changing the legislation. All previous polls indicate the same. There is overwhelming support in Ireland not only for a debate on this issue but also for going beyond that to legislate. It is obviously up to us to make that decision. I hope we will in the foreseeable future.

We touched on capacity and safeguards. These are extremely important elements of assisted dying. Could Dr. Campbell run us through the process, particularly in the Netherlands, if somebody wants to avail of assisted dying? How long does it take from the time that a patient wants to avail of assisted dying to the day of taking the life-ending medication?

Dr. Louise Campbell

I might make a couple of inadvertent errors in responding. To the best of my knowledge, the person requests assisted dying and then that request is reviewed. The person's capacity is determined by the attending physician. The patient does not necessarily have to have an existing therapeutic relationship with the doctor he or she goes to. The request is reviewed by a second, independent physician. If there is any query about capacity or any symptoms of mental illness, or a query about mental illness, a third person has to be consulted, namely, an independent psychiatrist. My understanding is that the process could take as little as two weeks. I am not 100% sure about the timeframe but I believe two weeks is the absolute minimum if the criteria are met. Not all legal ending of life in the Netherlands is euthanasia. To Senator Seery Kearney, a small percentage of the total, maybe 1.2%, involves physician-administered medication. Generally, the doctor will administer the medication-----

Deputy Gino Kenny

Dr. Campbell made a very good point on why that is.

Dr. Louise Campbell

It could be botched by the person and they might not ingest the medication properly. They might regurgitate it.

Deputy Gino Kenny

That is an extremely important point. I thank Dr. Campbell.

Deputy Patrick Costello

I asked most of my questions in the first round but I have a question on increasing numbers. We talked a lot in other sessions about travelling to Switzerland. If we are to examine the numbers for Switzerland, we must note they will be somewhat inflated because they will include people who travelled from jurisdictions where the service is not available. What is the position on assisted dying in states in Australia other than Victoria? Do people who travel to Victoria inflate the numbers? The same applies to the Netherlands and Belgium.

Are there safeguards around that? I am conscious the discussion may be slipping into some of the areas we will dig into in the international section in Dr. Campbell's experience of the differing levels of safeguards between, for example, the Benelux countries and Victoria, which work better?

Mr. Finn Keyes

Are those questions for us?

Deputy Patrick Costello

I directed them mainly at Dr. Campbell.

Mr. Finn Keyes

I will defer to Dr. Campbell.

Dr. Louise Campbell

My understanding is that apart from Switzerland, there is no provision in any other legislation for non-residents to be assisted to die, although this issue came up in a court case in Canada very recently. The residency criterion is, therefore, being looked at. This is emerging legislation in Australia. New South Wales has not even commenced its Act. That will happen in November but my understanding is that residency criteria are specified in all of those laws. The Northern Territory is the only state in Australia that has not introduced assisted dying legislation to date. It is all very new.

I will briefly talk about numbers to give the committee an idea of the position. In New Zealand, which has a slightly smaller population than Ireland, assisted dying accounted for 66 deaths last year, which was the first year after commencement. There were 206 applications for assisted dying and 81 withdrawals or deaths from natural or other causes, and 59 cases were still under assessment at the end of the year. Some 80% of those people were receiving palliative care and 6% of them were Mori, who account for between 12% and 14% of the population. As such, there is not a disproportionate impact on marginalised groups if we look at it from a racial perspective. In Oregon, there were 278 deaths after 431 prescriptions in 2021. These data are all from 2021. In Canada, there were 10,064 medical assistance in dying, MAID, provisions. I presume that means provisions for life-ending acts. In the Netherlands, there were 7,666 deaths. The numbers are always higher in bigger jurisdictions but in Oregon and New Zealand, which have populations of roughly the size of Ireland, the numbers have increased considerably, as Senator Mullen pointed out, since the original introduction of the laws. That is to be expected when something is made legal.

Deputy Patrick Costello

The populations of these places are rising over time as well.

Dr. Louise Campbell

The numbers of people assisted in dying probably exceed, per capita, the rise in population. That is to be expected when an intervention that has been awaited becomes law.

Senator Rónán Mullen

I thank Dr. Campbell for making that last point because not every one makes the point in advance of something being legalised that it is to be expected that when something is made legal, it increases. Yet, that is almost universally the case. As I understand it, it is not that it increases while, for example, a waiting list is being dealt with but that the increases we have seen in places like the Netherlands, Canada and Oregon are there over time.

On the Netherlands, I need to clarify something I said that was not quite accurate. When it was said that the Netherlands had been at this for a long time I thought of the Flann O'Brien phrase, "When it was neither popular nor profitable". I had suggested that, in the case of the woman who was euthanised against her will, they had given her the sedative in order to prevent her from resisting. The committee found that by giving her the sedative, they took away her chance to physically protest her death, and she got a further sedative when the first one was not having sufficient effect. I did not quite accurately state what had happened there.

The subject of double effect is important and I was a bit surprised that Dr. Campbell dismissed it in the terms she did. Some of what Senator Ruane is talking about is addressable. Mr. Keyes will know that normally in criminal law what is foreseeable is intended. Double effect describes the situation where this is different.

It is not just a matter of foreseeing something you do not want to happen; it has to be a proportionate effect. Senator Ruane mentioned self-defence. If in self-defence you kill a person when a lesser step would have been sufficient, you certainly are not going to escape a legal sanction.

On the question of the Christian origin of the doctrine of double effect, Mr. Keyes will agree that there is a lot that we take from history that continues to be useful, such as equity in the area of law. The Stanford Encyclopedia of Philosophy states many morally reflective people have been persuaded that something along the lines of double effect must be correct. It gives very practical examples, such as deciding to end the life of one person with a trolley in order to save five who would otherwise die. Maybe more controversially, it refers to the difference between terrorist bombing and tactical bombing where it is known that civilians might be affected. We need to be careful about dismissing double effect as though it were some strange hangover from the past. It continues to have real applications.

I am coming to this not just from the perspective of asking what safeguards the witnesses recommend but also from the perspective of asking whether safeguards actually work. Is there such a thing as a safeguard against people losing a sense of the value of their own lives because the State now permits them to be ended? In jurisdictions where there is a breach of safeguards put in place, is there in law a tariff similar to those for murder or manslaughter, for example?

Mr. Finn Keyes

I did not mean to dismiss the doctrine of double effect as an entirely empty-----

Senator Rónán Mullen

It was more Dr. Campbell who was gunning for it.

Mr. Finn Keyes

Fair enough. The doctrine is necessary within the current framework. There is genuine insight and wisdom associated with it, but, as the Senator rightly pointed out, it is a question of the extent to which we can truly say we do not intend things that we regard as 100% foreseeable. That is obviously dubious. That plays an important role. What was the Senator's last question?

Senator Rónán Mullen

Where attempts are made to have safeguards, or where there is what is described as a safeguard in any regime where euthanasia or assisted suicide is permitted, what tariff or penalty attaches to breaches of safeguards that cause to die people who, under the rules, should not have been allowed to die or be killed? Are we talking about the equivalent of penalties for murder or manslaughter in those jurisdictions?

Mr. Finn Keyes

I do not know but believe, without reference to a particular legal regime, that it would be murder or manslaughter, depending on the circumstances. Dr. Campbell can speak to the international comparisons, perhaps.

Dr. Louise Campbell

Could I go back to the doctrine of double effect? I thought there was a sentence of up to 14 years for contravening but ten years is the period mentioned in our assisted dying Bill for contravening the legal provisions around assisted dying. I am not 100% sure-----

Senator Rónán Mullen

Which assisted dying-----

Dr. Louise Campbell

For contravening the legal-----

Mr. Finn Keyes

Section 2(2) of the 1993 Act.

Dr. Louise Campbell

The period was 14 years, was it not?

Mr. Finn Keyes

I do not know it off the top of my head, I am afraid.

Dr. Louise Campbell

In my memory it is 14 years, but I am subject to correction on that. Ten years is mentioned for contraventions in the assisted dying Bill of 2020. I believe that people feeling their lives are devalued in jurisdictions in which provision is made legally for assisted dying is a very important concern but I also believe – this does not diminish the concern at all – that people who live in isolation and who are socially marginalised or excluded because of poverty, disability or chronic illness, or because they cannot access treatment, also feel their lives are devalued in very significant ways. We must try to have a balance. We must examine our duty as a society to minimise the sense of devaluation, regardless of the options we are talking about. I am very sorry if I came across as dismissive of a venerable philosophical tradition; however, I feel the doctrine of double effect is less useful in these discussions than a straightforward, nuanced, very careful examination of justifications on either side of a discussion about whether an intervention is legitimate.

We do not need a doctrine of double effect. If there is something useful about the doctrine of double effect, it is the distinction between a primary motivation or intention and a secondary intention. It is not a foreseeable versus an unforeseeable intention. I will hold my hands up, and I am sorry for holding members up, but I should not have been as dismissive about the acts and omission distinction as I was because clearly there is a moral and legal difference between withholding and, specifically, withdrawing medical treatment from somebody who is in the terminal phase of an illness on the one hand and administering a medication to somebody who may or may not be in the terminal phase of an illness on the other. Sometimes the debate focuses exclusively on the question of the agency of healthcare practitioners and their responsibility, legal and moral, in administering a medication to end a life when that actually distracts us from the particular circumstances and sometimes the desperation and suffering experienced from the person who is requesting it.

Senator Rónán Mullen

In the situation of regimes, let us say, and this may have happened in Canada, where we may be talking about a professional person who for ethical or professional reasons believes this is not the way to go and does not want to be involved themselves, this raises this issue of autonomy. Autonomy is a good but it is a good that has to be balanced with other goods.

Dr. Louise Campbell

Correct.

Senator Rónán Mullen

Therefore, if a person's autonomy is interpreted so as to allow him or her to avail of assistance in ending his or her life directly through euthanasia or indirectly through assisted suicide, there is an indirect effect because the person requires the support of a third party. People will have concerns about whether that will lead to a corruption of medicine or a change in the attitude of doctors. Will those doctors and others or, indeed, institutions, for example, hospices giving care, be required to make a referral whereby for them to refer in that situation is to refer to something harmful? Are they to be required in certain circumstances to provide it on their own premises because the third party, for instance, the State or some other authority, determines that the person's right to this procedure outweighs their right to do no harm as they see it? Do these issues not arise?

An Cathaoirleach

I will need a brief response to that because we are over time on this section.

Dr. Louise Campbell

My understanding is that in some of the Australian states, provision is made for policy decisions at local or institutional level. My understanding is that an institution cannot be compelled to provide this service for all the reasons we have discussed. I am not sure how the referral mechanisms will work. The referral mechanisms vary across jurisdictions.

There have been concerns historically in Canada over the past five years because people who live in remote areas simply cannot access a practitioner who will enable them to die and they are more vulnerable because of their geographical remoteness from urban locations. There are, therefore, a whole host of issues to be discussed with regard to conscientious objection, organisational objection and the mandatory or not mandatory obligation to refer. That is a big discussion but it does exist.

An Cathaoirleach

I thank both speakers. I call Senator Ruane.

Senator Lynn Ruane

I have two questions. Much of the debate on capacity has mostly considered mental capacity and how that can change. However, there is also physical capacity in terms of something progressing that affects someone's physical capacity to be able to see through their decision, say, a person who regularly insisted on assisted dying having the lack of physical capacity to see through the decision he or she made with full mental capacity. That full mental capacity may be still there but not necessarily the physical capacity.

Obviously, that comes into the conversation around the difference between assisted dying and euthanasia. When we talk about safeguards, we are mostly talking about safeguards for the most vulnerable and making sure that they meet the criteria to be engaged. However, there are also the vulnerable patients in terms of what safeguards are in place for vulnerable patients who have lost the physical capacity to be able to see through a decision they made on their end of life.

Is there a framework within assisted dying, without moving the conversation to euthanasia, where somebody within a family or an advocate, can be appointed by an individual to assist? I refer, for example, to help picking up a cup to drink a liquid. Can a family member help? My father is the first person who got me thinking about assisted dying when he expressed the wish that once he lost his mind, he did not want to live. That sparked big conversations in our house and between me and him as he lost more and more capacity. It was not a regulated system anyway, but he definitely would have needed help. How do we account for that, so that we do not let down people who lose the physical capacity to be able to see it through? How do we make sure that it can be exercised?

The second question I have is probably a bit of a reach. I am not sure I fully support the idea of assisted dying being limited only to terminal illness and time limited in the sense of it only being in proximity to death. I also have lots of question around mental illness. The idea is that we need lots of safeguards in that regard. I feel we also need to weight mental suffering in the same way as we weight physical suffering. The thinking is based on terminal rights. "Terminal" means that a person is likely to die or that is the trajectory of the illness over whatever period of time, or that the illness is likely to cause death. The argument could potentially be made that when it comes to decades of suffering with a chronic mental health illness that has not responded to treatment, and in spite of various types of treatment interventions, life has not improved. A person could say that he or she intends to end his or her life in the next six months. When do we say that terminal illness is only related to physical illness? Can the idea of a terminal illness also be associated with a mental illness on the basis that it is going to lead to death, but it might be by one's own actions rather than the disease? I know I am reaching there in terms of what is causing what, but I feel there should be a space where, after treatment, a person with mental illness should not be excluded from the conversation around assisted dying if he or she so wishes.

When we spoke about disabilities, Dr. Campbell stated that it goes without saying that people with disabilities will also want to engage in this conversation and others will not because they feel they are being pushed in that direction as a result of the lack of services. Would some mental illnesses also fall under the term "disability"? I wonder how much we are separating mental illness out from all other illnesses in regard to this decision.

Mr. Finn Keyes

In terms of Senator Ruane's first question, she is right to emphasise the distinction between decision-making capacity, as we have been talking about today, and physical capacity. They are two distinct things. In terms of the point she raises, what happens where a person has the capacity to make a decision to end their life, but does not possess the physical capacity to carry it out? That is obviously the key quandary in this area, which is whether we are entitled to help that person reach their own autonomous decision, and to give them the physical assistance to aid them, which was of course the case with Marie Fleming.

In terms of Senator Ruane's question about whether we could provide for a more simple solution to allow a family member to assist a person with a cup or whatever, once there is an external actor assisting a person, that triggers the need for safeguards. That is where we need to have a robust process to make sure there is not undue influence and so forth. In my view, even slight assistance triggers a need for safeguards.

In terms of Senator Ruane's second question on terminal illness, I do not think I have the medical expertise to answer that.

Dr. Louise Campbell

Again, Belgium and the Netherlands do not have a requirement that the illness is terminal or physical.

What they do require is that it is irremediable; that perhaps multiple attempts have been made to remedy it or cure it and they have all failed, and that the suffering the person endures is unbearable on their own terms.

To go back to what we were talking about with Senator Mullen earlier, where a third party arbitrates or adjudicates the quality of the person's life or the degree of their suffering, it is very difficult to make a determination as legislators which distinguishes between unbearable suffering experienced by somebody on the basis of a mental illness that he or she has had all their life - where a person still has capacity - and on the other hand an unbearable suffering experienced by a person who has a physical illness. Both of them are experiencing suffering that is intolerable on their own terms. If we have a duty to one category of person in that situation, do we not have an equivalent duty to another category of person, provided that he or she meets the capacity and voluntariness requirements and provided that there are additional safeguards in place to ensure that those capacity and voluntariness requirements are met in the case of mental illness? I agree that it could be seen as discriminatory not to allow it. I could see that it would pose problems from a disability rights point of view, but it has been argued that it could be discriminatory to distinguish between suffering based entirely on physical illness and an equivalent degree of suffering based entirely on mental illness. It is something to seriously consider.

An Cathaoirleach

On behalf of the members, the secretariat, and myself, I thank Dr. Campbell and Mr. Keyes for their excellent contributions here today. They were excellent witnesses and we appreciate their engagement. We are all very grateful for their expertise and time.

The next meeting of the joint committee will continue to look at the constitutional and legal issues around assisted dying. This meeting is adjourned until Tuesday, 4 July.

The joint committee adjourned at 1.22 p.m. until 9.30 a.m. on Tuesday, 4 July 2023.