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.