David Stanton (Cork East, Fine Gael)

I commend Deputy Liam Twomey for introducing this legislation. It is important that we discuss these issues. In the early 1800s Benjamin Franklin stated there were only two certainties - death and taxes. We are all going to die. Deputy Robert Dowds mentioned a clergyman. I know a clergyman who starts every sermon with the words, "We are all going to die." They call him Fr. Death.

It is not a question of when one should die but of how. This legislation deals with the capacity to make decisions on the care provided and treatment offered when we are looking death in the face and treatment options on the table. If we accept that I, as a patient, have the capacity to make a decision - defining what constitutes capacity is another issue - do I have the right to make the decision? If I am dying and a doctor suggests I undergo chemotherapy or, as Deputy Liam Twomey mentioned, radiation treatment, do I have the right to say "Yes" or "No"?

Many Deputies have alluded to an interesting study. The heads of the mental capacity Bill have been sent to the Joint Committee on Justice, Defence and Equality, which I Chair.

The committee had hearings on this with over 60 detailed submissions. Many of them advised that consideration should be given in the mental capacity Bill to including advance care directives. As I went through all the submissions and sat through all the hearings, I know it is a very complex area. No Member wants the mental capacity - legal capacity is the preferred term - legislation to be delayed any further as we need to ratify the UN Convention on the Rights of Persons with Disabilities. It is essential the mental capacity legislation is enacted soon and I expect over the next several weeks it will be published.

In its submission to the committee, the Irish Society of Physicians in Geriatric Medicine advised the qualifying bar for capacity should be low and specified in the legislation. How one defines capacity and so forth is important. The society referred to a 2004 article in The Lancet in which psychiatrists concluded 40% of hospital patients of all ages and more than 70% of older patients lacked capacity to make particular decisions they faced. The society stated the results of this are not surprising if one adopts a strict cognitive definition of capacity. It also stated people who are often sick find it hard to assimilate and weigh up the pros and cons of complex medical information but this should not mean they lose the right to make decisions for themselves. That gives an idea of how complex this can be if one attempts to define "capacity". The society stated capacity should only be called into question if the decision is important involving an appreciable risk and there is a good reason to call the capacity of an individual to make that particular decision into question, it is a seemingly irrational choice or one that does not seem consistent with that person's known beliefs and values. There is good evidence to suggest that a substitute decision-maker can make a better decision than an incapable person and more likely it would be implemented in practice. These are complex issues.

Several Deputies have raised concerns about suicide and euthanasia. Deputy Twomey has made it clear that his Bill is not about these matters. However, it is important to raise these issues in the Chamber. The Law Reform Commission put forward a detailed work on this whole area. It stated:

The [proposed] legislative framework should apply to advance care directives that involve refusal of treatment, subject to certain conditions to be specified in the legislation. [It recommended] if, following an appropriate process of consultation, a reasonable doubt exists as to the validity or meaning of an advance care directive, any such doubt must be resolved in favour of preserving life.

Deputy Terence Flanagan's concerns are met there. Its submission continued to recommend:

basic care cannot be refused under an advance care directive... and that basic care should be defined to include, but is not limited to, warmth, shelter, oral nutrition and hydration and hygiene measures... that a code of practice on advance care directives should be prepared under the proposed statutory framework to provide guidance on the creation and execution of advance care directives. The commission also recommends that the code of practice should be prepared by the proposed office of public guardian and should be based on the recommendations of a multidisciplinary working group established for this purpose by the office of public guardian with input sought from, for example, the Health Service Executive, the Medical Council, An Bord Altranais, patients' groups, the Irish Hospice Foundation and HIQA.

A significant amount of work has already been done in this area over the years. It is time to make decisions on it. I would favour this is done through the mental capacity Bill. Using stand-alone legislation is debatable. However, there is no need for further debate on this area. The research has been done and we have international experience to draw from too.

The Irish Hospice Foundation has also done much work in this area. It maintains advance care directives would assist health professionals faced with making decisions without a legal framework. It stated 25% of physicians had dealt with patients who had made advance care directives. However, there is no legal framework in place and it is up to us to put it into law. It also maintained that legislation focused on treatments people did not want rather than on treatments people might want in the future. Doctors and family members can be confident with the treatment for which their patients and loved ones gave consent. There is no conflict or sense of regret for families. Putting in place advance care directive legislation will assist families.

Deputy Terence Flanagan referred to scenarios where an individual regains capacity. He gave the example of the tragic case in the UK where a young woman came to a hospital clutching an advance care directive, or a living will as he called it. My understanding is that if at any stage someone says to forget about the advance care directive, and they have capacity to do so, then that is it, it is gone. If they say they have changed their mind, on the hospital bed or wherever, the medics are obliged to take that into account.

Many organisations want the advance care directive legislation to be put in place. No organisation that presented before the justice committee on this was against it. The justice committee's report calls for a paradigm shift in our thinking regarding mental capacity or legal capacity as has been recommended it should be termed.

In its submission to the committee the acquired brain injury service at the National Rehabilitation Hospital stated special note should be taken of people with acquired brain injury. It referred to locked in syndrome, a condition whereby a patient loses all voluntary movement apart from the ability to blink or move eyes vertically, and the need for an assessor who has specialist skills to establish the level of competency because the patient cannot speak. I wanted to flag this issue and I am sure Deputy Twomey is interested in this. It also stated experience had shown that non-specialists may grossly overestimate or underestimate the patient's capacity to be involved in decision-making regarding their own health care or other needs. It recommended patients with specific communication disorders are assessed by a specialist team experienced in assessing impaired communication so that accurate assessments of competency can be achieved for patients with severe communications disorders following an acquired brain injury.

The Citizens Information Board stated while this is a complex area, it is one with a potentially significant role in ensuring people whose capacity becomes impaired can have their wishes met, particularly in an end of life scenario. The Third Age National Advocacy Programme supported the Law Reform Commission's report Bioethics: Advance Care Directives. The Law Society is in favour of this legislation. It stated in addition to providing the status and validity for such directives, the legislation should make it clear that a person has a right to refuse treatment.

There are also issues to do with mental health and psychiatric conditions.

This is an issue we must particularly address, and perhaps Deputy Twomey might deal with it in summing up.

The group Mental Health Reform has made a submission to the capacity legislation being discussed. Its representatives have indicated that it is common practice that advance psychiatric directives may be overridden if a person is a danger to oneself or is subject to involuntary admission. That addresses the issue raised by Deputy Flanagan, and the matter he raised seems to involve some kind of psychiatric condition. Advance directives have a particular importance in the area of mental health treatment as they can have a therapeutic effect. It is interesting that this is true for service users because of a process of building self-esteem, reducing stress and leading to improved communication between doctors and patients. Arguments have been put forward that because of the episodic nature of many mental health problems, many people become experts in their own care and would know what works at a time of crisis. Advance directives provide a mechanism to harness patients' expertise and thereby improve decision making quality in mental health care. Mental health should be addressed in discussing advance care directives.

A significant amount of work has taken place. It is now time to start putting the legislation together. This is a start and there is an opportunity to include its provisions in the mental capacity Bill, which will link definitions of capacity with advance care directives. It would be a good fit. The area is complex and much detailed work is required. As we know, when something is written into legislation, the issue can become complicated and we must get it right the first time around. I wish the Bill well and congratulate Deputy Twomey for bringing it forward. I look forward to more detailed discussions on this in whatever committee is asked to take it on.

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