Preparing for end of life
The likelihood that advance healthcare directives (AHDs ) will soon be part of legislation should be welcomed by medical and legal professionals as well as all who believe in personal autonomy. For too long despite treaties and conventions urging such mechanisms, Ireland has been slow to legislate. The signal from the Supreme Court has also been clear. A person with capacity should have the right to control his or her treatment and care, including the right to refuse treatment that would facilitate a natural death.
The provisions for AHDs included in the Assisted Decision-Making (Capacity) Bill are in tandem with the philosophy of Think Ahead, a project from the Irish Hospice Foundation and council of the Forum on End of Life. Think Ahead guides people to reflect on, and record, all aspects of end of life, including preferences on legal and financial issues, organ donation and funeral arrangements, as well as AHDs.
Someone preparing an AHD will be assumed to have the competence to do so, unless there is evidence to the contrary. This directive will outline precisely his or her treatment preferences in the event of future incapacity. And a person can refuse treatment even if that decision appears unwise, not to be based on sound medical principles, or may result in death.
However, as the draft consultation paper highlighted, promoting self-determination for adults in health matters is complex, and a number of issues need to be considered. One of them is the extent of the role of the “patient-designated healthcare representative”. It is proposed that this person will be appointed by the maker of the directive to either clarify its terms or make treatment decisions on behalf of the directive’s author if he or she loses capacity.
Other clauses provide that while treatments can be refused, a particular treatment cannot be demanded although it should considered. There are considerations on AHDs involving pregnant women, the necessity for professional advice, and review periods. The proposals deserve a thorough Oireachtas debate.