Progressive Bill on assisted decision-making offers real hope for families and carers

 

The Assisted Decision-Making (Capacity) Bill was published in July 2013 and, if implemented, will reform the law relating to persons who require assistance exercising their decision-making capacity. This is an exciting and progressive initiative which offers real hope for the empowerment of thousands of individuals who require assistance making certain decisions at certain times.

When the legislation is finalised it will replace Ireland’s current ward of court system which is extremely outdated and problematic in terms of human rights. The current wardship system has an all-or-nothing approach to capacity; does not adequately define capacity or lack of capacity; is poorly responsive to change; makes unwieldy provision for appointing decision-makers; and has insufficient provision for automatic periodic review.


Presumption of capacity
The new Bill addresses many of these deficits and, most importantly, includes a clear presumption of capacity. It also specifies that all interventions in relation to decision-making assistance must minimise restriction of rights and freedom of action, and have due regard for “dignity, bodily integrity, privacy and autonomy”. These are important, empowering principles.

The Bill goes on to propose legal frameworks for a range of decision-making supports. The first level of assistance is “assisted decision-making” which is where an individual voluntarily appoints someone to assist with specific decisions relating to personal welfare or property and affairs (eg assisting the individual to communicate his or her “will and preferences”).

The second level of assistance is “co-decision-making” where the Circuit Court declares that an individual’s capacity is reduced for specific decisions but he or she would have capacity for those decisions if he or she voluntarily appointed a “co-decision maker” to share authority for those decisions.

The third level of assistance involves “decision-making representatives” and is a form of substitute decision-making for specific decisions. It is envisaged that this provision will be used rarely. The Bill also contains new provisions for creating an “enduring power of attorney” (ie appointing someone to make specific decisions in the future) and “informal decision-making on personal welfare matters”, governing day-to-day care decisions often made informally by families and carers (although these provisions do not permit deprivations of liberty).

Overall, the Bill introduces two major conceptual changes to Irish capacity law. First, the Bill moves Ireland from a “status-based” approach to capacity to a “functional” approach. This means that an individual with, for example, moderate intellectual disability, would no longer be presumed to lack capacity simply because he or she has a disability. Instead, that individual would be presumed to have capacity and, if that capacity is called into question, capacity is to be determined in a decision-specific, time-specific fashion; ie for any given decision, capacity is to be decided based on the individuals understanding of that decision, at that time. And while an individual may have reduced capacity for a certain decision today, he or she may well have capacity for other decisions today, and may regain capacity for all decisions in the future.

The second major change is that this Bill emphasises the “will and preferences” of the individual, rather than his or her “best interests” as determined by others. This increased recognition of “will and preferences” is both welcome and important. It would, however, be a mistake to jettison “best interests” completely. The concepts of “will and preferences” and “best interests” are by no means inimical to each other and, once applied in the context of the other principles of this Bill and within a broader human rights framework, both concepts have roles in addressing the complex situations which occur from time to time among individuals with fluctuating capacity.

Interestingly, the Mental Capacity Act 2005 in England and Wales places “best interests” at the heart of its legislation, stating emphatically that “an act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests” (section 1, principle 5). The relevant code of practice in England and Wales presents a “best interests checklist” which also incorporates the importance of the person’s own views.

Thus, while the concept of “best interests” may have been misused in the past, it can, when used correctly, be an important and empowering concept, both consistent with the Constitution and necessary for families and carers who struggle daily with complex dilemmas.


Empowered lives
On this basis, the new Bill, although admirable in many ways, misses an opportunity to articulate a realistic, principle-based balance between autonomy and care and support that are in the individual’s “best interests”. While the Bill’s emphasis on “dignity” may go some way toward addressing this dilemma, reintroducing the concept of “best interests”, combined with “will and preferences” and the other principles in the Bill, would provide much-needed clarity for hard-pressed families and carers. Most importantly, it would promote more dignified, empowered lives for individuals whose capacity may be in question, and help realise more fully the aims of this important, progressive Bill.


Dr Brendan Kelly is senior lecturer in psychiatry at UCD and consultant psychiatrist at the Mater Misericordiae University Hospital