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Ó Caoláin welcomes Advance Healthcare Decisions Bill

8 June, 2012 - by Caoimhghín Ó Caoláin TD

Caoimhghín Ó Caoláin TD, Sinn Féin Health & Children spokesperson has welcomed the Advance Healthcare Decisions Bill 2012.

Speaking in the Dáil today Deputy Ó Caoláin said:

I welcome this Bill and I commend Deputy Twomey for bringing it forward.

The Bill provides a welcome opportunity to address an issue that we are really only beginning to come to terms with as a society.

People are living longer. Medical science is expanding all the time and – at least in the developed countries – it is combatting illness and disease ever more effectively and in such a way that life expectancy is being extended as never before. This is hugely positive. At the same time it entails its own challenges. Care of an older population is a huge challenge. Care of people with long-term illnesses is equally challenging.

We are also faced with new dilemmas – or, at least, dilemmas that were always there are now in sharper focus. Among these is the possibility and the wish to determine future care before the capacity to do so is gone, especially where a terminal illness is concerned, and especially given the ability of medical science to prolong life artificially and, indeed, mechanically.

For many this is not a choice that they will want to make at all. They will be content to leave it in the hands of medical professionals and their families, often with the hope that what seems terminal illness may prove not to be so.

But many will wish to have the choice not to continue with artificial prolongation of life where all avenues of recovery are closed.

We need to increase knowledge and debate on these issues.

The term end of life is now commonly used – I respect that, but we should not shy away from talking about death. We should not be afraid to think about or talk about that which faces us all.

Last year the National Council Forum on End of Life, sponsored by the Irish Hospice Foundation, launched the ‘Think Ahead’ project. ‘Think Ahead’ is an initiative which encourages people to prepare for the end of their lives by providing a form that records treatment preferences. This can then be accessed by named parties or authorised health professionals, if the person is unable to articulate their wishes.

A ‘Think Ahead’ form is described as a private and confidential document storing information about a person’s emergency contacts and preferences for treatment and care that can be accessed by key persons when they cannot articulate their wishes themselves.

Elements and benefits of such a document include next-of-kin contact details, organ donation preferences, end of life care preferences, initiating dialogue, promoting efficiency and quality of care and education.

As the law stands such a document would not be legally binding and could only be implemented on a purely voluntary basis. This Bill would have the effect of giving a legal basis to end of life care preferences.
This Bill would allow for an instruction to refuse life-sustaining treatment and for the appointment of an attorney, who can make certain decisions on a person's behalf. A healthcare professional would not have any legal liability where they follow an Advance Decision that they believe is valid and applicable to the condition being treated. A healthcare professional would thereby have a defence if they acted in good faith.
Obviously there are complex ethical and legal issues surrounding this which need to be fully teased out both in a wider public debate and, if this Bill proceeds, during its passage through the Oireachtas. This is a case where we should proceed with caution, slowly but surely.

For example, some medical professionals may have ethical difficulties implementing an Advance Care Decision, especially where it involves not continuing artificial life-sustaining treatment. Such ethical concerns need to be taken into account.

This issue is bound up with the whole question of the need for a firmer legal definition of capacity, a person’s ability to make decisions. The Mental Capacity Bill is promised but I understand that Minister of State Kathleen Lynch has ruled out inclusion of provision for Advance Care Decisions in that legislation. Perhaps the Government side would explain why this is the case, especially as the Bill before us today is being proposed by a Government deputy and is, I now understand, not being opposed by the Government side.

Ideally the two Bills would proceed in parallel or would form part of one comprehensive piece of legislation so that all the relevant and inter-locking issues could be considered together.

If the Mental Capacity Bill does not include Advance Care Decisions and since this Bill rules out Advance Care Decisions in relation to treatment that is lawful under the Mental Health Acts 2001 and 2008, where does that leave people with mental illness?

It would appear to exclude them from any provision for Advance Care Decision. It implies that people with mental illness automatically do not have the mental capacity to make decisions. But of course we know that mental illness in all its forms is not a static condition, no more than many other forms of illness are static, and capacity, when lost, is not necessarily irretrievable.

Therefore, if this Bill is to proceed and to be improved, and if the Mental Capacity Bill is indeed to leave out Advance Healthcare Decisions, then the apparent exclusion of people with mental illness would need to be included by way of amendment.

This demonstrates also the wider need to modernise mental health legislation in line with the new Convention on the Rights of Persons with Disabilities.

I want to commend the Irish Section of Amnesty International for the work they are doing in this regard.

Amnesty have made the point that new capacity legislation should revolve around supports for people to make decisions for themselves or have decisions taken that are centred around a person’s will and preferences – as per the UN Convention on the Rights of Persons with Disabilities. Civil Society organisations here have drawn up Essential Principles that include:

• Advance planning should be an option that is available to all (including planning in relation to mental health). Awareness-raising and education around advance planning as an option is a key part of a supported decision-making model.
• Advance planning should be subject to safeguards which ensure that the decision to appoint a representative reflects the will and preferences of the person and that the representative does not abuse his/her position or act outside the prescribed role.
• There should be a meaningful ability to challenge and reverse the appointment of a representative in advance planning.

Amnesty also make the point that advanced directives that apply to mental health have been introduced in Germany, Austria, Scotland, England, Spain, Belgium, Denmark, Estonia, Finland and Hungary. Other States are working towards providing for them.

At the Justice Committee hearing on capacity legislation last February, several organisations, including the Law Reform Commission expressed the opinion that the capacity legislation should contain provision for advance directives. Law Reform Commissioner Patricia T. Rickard Clarke stated that capacity legislation should include strong provisions on advance decision making, including advance care directives. She went on:

The legislation should be facilitative in nature and be seen in the wider context of a process of health care planning by an individual, whether in the general health care setting, mental health care planning or in the context of hospice care. An advance care directive should be defined as the expression of instructions or wishes by a person of 18 years with capacity and should also apply to advance care directives that involve refusal of treatment subject to certain conditions specified in the legislation. In other words, a person cannot refuse basic care but can refuse artificial life sustaining treatment.

The strong point about inclusion of this in capacity legislation was re-enforced during the Committee hearing by the Law Society, by Prof Gerard Quinn of NUIG, by Amnesty International, by the Alzheimer Society of Ireland and by the Mental Health Commission.

In conclusion I want to mention the failure thus far to appoint the 414 mental health positions promised for this year. Minister of State Lynch has acknowledged this failure and has promised that they will be recruited by the end of the year. The money for this was allocated in December. It is now June. Why have none of these positions been filled? Is there a question mark over the efficiency of the recruitment process? Are the recruits available in Ireland? Or has money for this been diverted somewhere else? We need answers and, most importantly, we need to see people in these posts, in all these posts, providing mental health care for adults and children.


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