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Substitute decision-making has been replaced or superseded by supported decision-making in the Assisted Decision-Making Capacity Act.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.