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.