Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697750485083.pdf (Ireland)
Joint Committee on Assisted Dying Opening Statement (Louise Campbell) June 27, 2023 A Cathaoirleach, members of the committee, thank you for the opportunity to present to you today.

To provide medical assistance in dying is to end a human life.

For proponents of legalizing assisted dying, legitimate arguments can be put forward to justify the practice under certain circumstances; for opponents, no adequate justification can be provided1.
As with all controversial ethical questions, there is no universal 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.
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, the integrity of the medical profession.
What legislators considering implementing a new regulatory system can do is ensure balanced, 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 these criteria vary from country to country, sometimes significantly (for example, whereas ‘unbearable suffering with no prospect of relief’ plays a central role in the Netherlands and Belgium, the US states focus on a terminal illness with a time-limited prognosis and Canada, New Zealand and Victoria require both).
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 the question of whether adequate safeguards can be put in place to ensure that legalization 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 functions as it should.
1 Arguments supporting legalization include the argument that there is a duty to relieve suffering and the argument that an autonomous person with decision-making capacity should have a legal right to request assistance to end a life which because of a medical condition is experienced as intolerable to her.
The most powerful argument against legalization is the argument that making assisted dying widely available may have a disproportionate impact on people who are vulnerable because of illness, disability or lack of access to appropriate care and support.
1 Assessing decision-making capacity Informed consent is the voluntary, uncoerced authorization of a medical intervention by a person who has capacity to make a decision in relation to the proposed intervention and has received adequate information to enable her to make the decision.

Decision-making capacity is the ability to understand information relevant to a decision, to retain and use the information in the process of weighing options against one another and to communicate the decision.
Along with voluntariness and irremediability (Gaind, 2020), capacity is a key eligibility criterion in all jurisdictions in which medical assistance in dying is legal2.

Ethical concerns can be raised about all three components of informed consent: decision- making capacity, voluntariness and information provision.

Assessing decision-making capacity is a complex task and there is some evidence of knowledge gaps among clinicians in relation to capacity assessment (Peisach, Sheahan and White, 2019).
At the heart of the liberal medico-legal tradition is the idealized concept of a rational, independent self which is capable of making its reasons and motivations transparent to itself.

Real world situations 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 illness, pain, anxiety or exhaustion.
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 (Charland et al, 2016; Hawkins and Charland, 2020).

Voluntariness A person may meet the cognitive requirements for capacity, 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, hopelessness and a desire for death; this may arise from physical, psychosocial or existential distress and may significantly influence a person’s decision-making (Gudat et al, 2019).
While the presence of depressive symptoms in itself is not automatically correlated with a 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 assistance in dying.
The voluntariness of the decision to request assistance in dying also needs to be tested in tandem with the assessment of capacity and careful screening for undue influence – actual or perceived pressure arising from a person’s situation or environment - should be part of this process (Peisach, Sheahan and White, 2019).

As in other areas of medicine, the rigourousness of any capacity assessment should be proportionate to the gravity of the decision in question (Holmes et al, 2021).
Structural vulnerability and unmet need Requests for assistance in dying may mask the existence of unmet needs.

Vulnerability is a universal condition, but systemic or structural inequality – the impact of the interaction of demographic factors such as age, disability, linguistic ability, socioeconomic profile, gender - may exacerbate a person’s vulnerability (Health Canada, 2021).
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.

Ensuring that anyone requesting assistance in dying is not doing so because of a lack of alternative options is a prerequisite for the validity of their informed consent.
If a person with a progressive, terminal illness chooses to request assisted dying in order to avoid suffering 2 In Belgium and the Netherlands advance euthanasia directives remove the requirement that capacity must be contemporaneously demonstrated, as long as the directive-maker had capacity at the time of drawing up the directive.

2 in a situation in which they would have chosen palliative treatment, had it been available, that person is not making a real choice (Barutta and Vollmann, 2015).
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.
It is well known, however, that a minority of patients experience suffering which is refractory and providing effective, tolerable and rapid treatments for anxiety and depression at the end of life in particular is an ongoing challenge for both palliative care and psychiatry (Cheung et al, 2022: 321).
But 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 (Barutta and Vollmann, 2015).
Importance of mandatory training for health professionals 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 (Peisach, Sheahan and White, 2019).
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 (White et al, 2021; New Zealand Ministry of Health, 2022).
Ensuring that practitioners are properly trained is an ethical imperative and vital for protecting patients in jurisdictions in which the legislation is new (White et al, 2021) In conclusion, debate about the permissibility of legalizing 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 (Cheung et al, 2022).
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, this 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 that the voices of disability activists and members of the disability community have a central place in this discussion.
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