THE NEED FOR all of us, not just older people, to plan for the loss of mental powers to prevent financial or other abuse was highlighted at the recent All-Ireland Gerontological Nurses Association conference in Galway.
The law is about to change to allow people to make what is called Advance Healthcare Directives where they state their wishes about how they want to be cared for in the event of mental decline or incapacity. It includes the capacity for people to appoint an attorney or a friend to look after their interests should their faculties fail.
At present, 20 per cent of people over 80 years of age are diagnosed with dementia. However, serious illness, brain injury, accident or stroke could render any one of us incapacitated and unable to look after our affairs. Therefore, making an advanced healthcare directive should be as automatic and as commonplace as making a will.
The upcoming legislation, due in 2015, will assist people with capacity issues to participate in decisions that affect their lives and how their wishes, beliefs and values can be respected in that process.
The purpose of the legislation is to promote the autonomy of persons in relation to their treatment choices. The idea is to encourage us all to set out our wishes and life choices in advance, when we have the capacity to do so.
The aim is to provide clarity to those caring for us about our choices with regard to healthcare treatment if we should subsequently lack the capacity to decide and communicate our wishes.
There is currently no legislative framework in Ireland to govern how a decision about treatment and care should be made for those who lack capacity to make decisions for themselves. However, the courts have recognised that there is ‘an absolute right in a competent person to refuse medical treatment even if it leads to death.’
It is intended that the provisions for Advance Healthcare Directives will be incorporated in the Assisted Decision-Making (Capacity) Bill 2013. The legislation will be underpinned by a number of core principles which are intended to safeguard and respect the rights of a person to his or her dignity, bodily integrity, privacy and autonomy and to give effect to past and present will and preferences. The new legislation defines advance healthcare directives as a written expression of will and preferences by a person with capacity, concerning treatment decisions that may arise in the event that the person subsequently loses capacity.
The main principals are that an adult is presumed to have the capacity to prepare an advance healthcare directive (AHD) unless there is evidence to the contrary. That directive is to be made on the basis of informed decision-making. Adults are entitled to refuse treatment for any reason, including religious reasons, even when it appears unwise or not based on sound medical principles, even where this refusal may result in death.
To be legally binding, the directive must set out clearly the treatment to be refused and the circumstances in which the treatment refusal is intended to apply. A person refusing life-sustaining treatment must verify by a written statement to the effect that the directive is to apply to that treatment even if his or her life is at risk.
However, treatment requests will not be legally binding. While a person’s wishes will be taken into account, the medical profession cannot be obliged to give medical treatment that is not clinically appropriate. A person must also be over 18 to make an advanced healthcare directive, they must have capacity at the time of making it, make it voluntarily and it must be witnessed.
They can revoke or alter their directive at any time if they have the capacity to do so, and can appoint another person, friend or attorney to act as their Designated Healthcare Representative to ensure that their wishes are carried out. They can also give their representative a general power to consent to or refuse treatment up to and including life-sustaining treatment.
There are many positive outcomes for patients who indicate their wishes in advance with regard to the type of care they wish to receive. Healthcare staff have clarity as to patient’s preferences which lead to tailored care to individual circumstances; and family members also know what the individual wants which can help reduce their stress, anxiety and grief
The Assisted Decision-Making (Capacity) Act (including the provisions on advance healthcare directives) is expected to be enacted later this year and I believe every one of us should give seriously consideration to it.
Patricia Rickard-Clarke is a solicitor and former Commissioner of the Law Reform Commission. She is Chair of the Law Society’s Mental Health and Capacity Task Force and is a member of the Council of the Hospice Foundation and a member of its Think Ahead Project Advisory Group of the Forum on End of Life, the HSE’s National Financial Abuse of Older People Working Group and the User Group of National Centre for the Protection of Older People (NCPOP) at University College Dublin.
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