Advance Healthcare Decisions Bill 2012: Second Stage

Deputy Liam Twomey

I move: "That the Bill be now read a Second Time."

I thank Members for coming to the House this morning and in advance for the contributions they will make to the debate on the Bill. I also thank a classmate of mine, Dr. Simon Mills, who is also a senior counsel, for the great help he has given to me and party colleagues in drawing up this legislation, as well as Dr. Siobhán O'Sullivan from the Department of Health who has been working on advance health care directives in the Department. I was unaware of her work on this issue. The fact that so much work is being done behind the scenes by so many committed people may help this legislation to see the light of day. Organisations outside the Oireachtas such as the Irish Hospice Foundation, Amnesty International and a host of committed organisations in the mental health and elderly advocacy field have helped us to focus on what needs to be done for patients in the health care system. I appreciate their support in drawing up this legislation.

When my father was diagnosed with advanced bowel cancer in 2005, he decided he would undergo limited surgery. He did not want to undergo the radical surgery proposed by his consultant and decided instead to avail of palliative chemotherapy, a less stressful form than the radical chemotherapy many patients undergo. He also decided not to avail of radiotherapy. If he was suffering from Alzheimer's disease or dementia at the time, as a family, we might have disagreed on what was best for him. The doctors treating him might also have disagreed with him on what was the best course of treatment for him. That is what this issue is all about - keeping the wishes of the patient at the centre of the decision-making process in the health care system.

An advance health care decision is nothing more than what any of us could make if diagnosed with a significant illness. We would decide what treatments we would like or would not like to receive. That is all what an advance health care decision plan would allow one to do. It would allow a person to keep control when he or she no longer had the necessary capacity.

I want to make something clear. This is not about euthanasia, the deliberate taking of somebody's life when he or she decides life no longer has a value, nor is it about assisted suicide or refusing life saving treatments such as blood transfusions. This is about having the power to decide what treatments one would like to receive in the event that one receives a serious life limiting diagnosis at a time when one does not have the capacity to decide on the treatment options available.

It may sound straightforward, but there are complexities involved in this issue. The biggest question is what is capacity. Who can or cannot make these decisions? The heads of a Bill on this issue will be published by the Department of Justice and Equality in the coming weeks.

There are flaws in the Bill I have presented. I am not precious about it and would like the Chamber to decide on the best legislative route for patients. Some of the weaknesses have been identified for me in the discussions I have had with people inside and outside the House. I have been told the Bill is too prescriptive in terms of basic medical care needs. I agree. We should say basic medical care needs should be provided for at all times. This issue can be decided at a later stage. We do not need to be too prescriptive in the legislation in that regard.

I have provided that a doctor should read through an advance health care decision made on behalf of a patient. That comes from my background as a doctor in that I have been asked to read through patients' living wills. However, someone asked me why a doctor, no more than a solicitor, should read through it. This is a decision for the patient to make on what treatment he or she wants to receive. If he or she has the capacity to make the decision now, I do not see why I, as a doctor, should interfere in that decision-making process or why he or she should need to obtain a solicitor's or a legal opinion on it. This is about empowering patients to make decisions for themselves. That is the ethos to which we are moving towards in the health service. We are moving towards putting the patient at the centre of the service and that is the thinking behind this provision.

Another weakness identified is that the legal standing of an advance health care decision is not strong enough in the legislation. It is important that we give it the strongest legal standing possible. I have been asked to amend section 8 to make it clear that there can be no opt-out clause for doctors to say they will not accept an advance health care decision for whatever reason. If this provision is to mean anything, it must have the same legal standing as any other document. Therefore, there should be no opt-out clause for any of those treating a patient. An advance health care decision should be treated as a legal document and one should only be able to opt out if there was a serious flaw in it.

Decision-making in the health service should be patient centred. There should be no waffle and we should not pay lip service to the notion that the health service should be patient centred. It has been pointed out to me that there is a provision which has been left out of the legislation. We must create a role for proxy health care decision-makers, whereby one could assign somebody to stand over an advance health care decision. The person concerned would not have to be a doctor or one's solicitor; he or she could be a family member or a trusted friend who would understand what one wanted in the event that one could not make the decision. If this legislation proceeds to Committee Stage, it is important that such a provision be included in it.

The Minister for Health and the vast majority of Members of the House support the sentiments expressed in the legislation and believe we must give patients as much power as possible in the health care system. However, this could be tricky. The Minister and I are members of the medical profession and I know there will be significant resistance from the medical profession in the same way as there is always resistance in changing thestatus quo. This is very useful legislation and will be very important in helping people to make decisions about how they plan their health care. The legislation is simply about empowering patients to become involved in decisions on their health care needs, both now and in the future when they may not have the capacity to make a decision. I ask for the Members’ support for the legislation.

Deputy Billy Kelleher

I welcome the opportunity to speak on this issue. The Bill is very detailed and concise. However, the issue merits much broader debate than a debate in this House alone. It should deal with a change to ethics and how society views certain issues. We should think long and hard about this before we rush headlong towards passing the legislation. It is appropriate, however, that the legislation stimulates debate on the issue. Mr. Dermot Gleeson, the former Attorney General, commissioned a report in 2007 but it was never laid before the Oireachtas Committee on Health and Children. Perhaps that committee should discuss further the broader issues surrounding the Bill.

The Bill is detailed, and one could go through it line by line on Second Stage and highlight some of its inadequacies. Its proposer, Deputy Twomey, has already identified one or two inadequacies that were brought to his attention. There is no unanimity among the medical profession or in society with regard to the proposals in the Bill. It contains some fundamental flaws in that people could be put under duress, for example. I see no safeguards in the Bill to prevent family members or others acting on behalf of a patient who may be fully capable mentally but vulnerable in other respects from exerting pressure. However, this issue could be dealt with on Committee Stage if the Bill proceeds that far.

We need to address this issue. We talk about patient care and patient-centred focus. We all believe everybody has a right to his bodily integrity and should be able to make decisions for himself. There is another Bill before the Houses of the Oireachtas, the mental capacity Bill, that could have an impact on this Bill. How does it fit in with the Bill before us?

I welcome the opportunity to speak on this Bill and that its being brought before the House will stimulate debate. The practices to which the Bill alludes occur week in, week out at bedsides in hospitals throughout the country and in family homes. There is no family which at some stage will not be brought into a conference with its GP, consultant and terminally ill loved one to make decisions. Everybody must make decisions about a loved one at some stage in his or her life. One must ask whether the legislation is necessary at all in view of its potential to be too prescriptive.

There is a need for consensus and to have informed, detailed discussions. We should obtain the report by the former Attorney General, Mr. Gleeson, and submit it to the Oireachtas Committee on Health and Children as a basis for discussion on this issue. Some will have very strong views on the Bill. Deputy Twomey stated some of the medical professionals and representative groups have already discussed this issue at various conferences and have set up sub-committees and established ethics committees to consider it. There is no broad consensus.

The legislation leads to the question of compromising medical professionals in carrying out their duties. Deputy Twomey stated quite correctly that an advance health care decision document or living will, if signed, should have the same legal standing as any other legal document. However, this raises the question of the ability of medical professionals - Deputy Twomey is one - to make decisions in the interest of a patient. This matter requires broad discussion to achieve consensus and inform society.

I agree with Deputy Twomey in that I do not accept the Bill is a first step to euthanasia or assisted suicide but there are thousands who believe it is. Where a fundamental issue of life and death is concerned, we should probably put the matter to an expert group. We always shove responsibility for hard decisions into some committee. That said, we should bring in various groups with contrary views, certain beliefs or strong convictions in this area to determine whether we can achieve consensus in society. If we are to tie the hands of the medical professionals in every way, it will compromise them. We have a duty to listen to what they have to say. Let us be quite clear: we put our lives in the hands of medical professionals day in, day out. As matters stand, we sit around bedsides with our loved ones and talk to our general practitioner and consultants and then make decisions about life and death. This happens continually. Deputy Twomey, however, is proposing that an individual of sound mind and with full capacity could decide the types of treatments he or she should not receive in the event of acquiring a certain illness or debilitating disease. A person of sound mind may make a judgment today to the effect that he does not want a certain type of treatment in the event of something happening to him, but medical treatment and technology could advance to the point where the illness could be cured. Surgery that was massively invasive some years ago is no longer invasive and conditions can be treated in other ways.

Rather than being divisive, I am trying to be constructive. We should bring in all groups concerned and have a broad discussion reflecting broader society. In many people's minds, not mine, this is an issue that is moving beyond what is considered the normal medical practice of allowing the family, patient, medical team, general practitioner and anyone else concerned to discuss the pertinent issues when they arise, either in people's homes or at the bedside in hospital. I propose that, rather than being divisive, we park the Bill and submit the report of the former Attorney General, Mr. Dermot Gleeson, to the Committee on Health and Children to have a detailed, informed discussion on the merits, or otherwise, of the Bill and many aspects of end-of-life care or palliative care.

The Minister, Deputy Reilly, is a very strong advocate of patient-centred care. I fully support that, as does everybody. There are areas of vulnerability in the Bill in that patients and other individuals could be put under duress. There seem to be no safeguards whatsoever in the legislation in this regard. Family members could put an elderly person of sound mind under pressure to be prescriptive regarding the types of treatments he or she would allow in end-of-life circumstances.

The Bill is well crafted and goes to the heart of decisions that doctors and families make day in, day out. Therefore, rather than accepting or rejecting the Bill today after discussion, I propose we take a proactive approach thereto. We should allow the Committee on Health and Children to discuss the concept of the Bill and have informed, detailed discussions. We do so every day in Oireachtas committees in respect of many subjects that do not entail life and death. One might say the reason people might oppose this Bill or support it is they have stronger views on end-of-life care. Many Members on all sides of this House would expect and support the idea that a person has a fundamental right to the most intricate and expensive medicines, and to have the best technology available to him or her, right to the end to keep him or her alive. Equally, Members might say persons have a right to determine the types of treatments they will receive in the event of them finding themselves with a debilitating disease or a terminal illness. We probably all accept that, but there are difficulties in trying to get those two arguments and two sides to meet without conflict and division and without putting fear in the minds of some.

Rather than rehashing my views, I suggest we park this Bill as is and make a commitment in the House to bring forward the report to which I have referred, have detailed discussions on it, and use it as a basis to try to bring about a consensus and a really informed debate. If we are being honest, there are persons watching this debate who will believe this is a first step to assisted suicide and euthanasia. People will believe that. People believe many things when they are not informed. We must inform the public about this proposal, and the best way to do it is through constructive broad discussions where everybody can have his or her view represented. We would then have a final report and recommendations, and if the recommendations are broadly in support of this Bill, let that be the case.

There are the views of the Irish Council for Bioethics and there are other views. The Labour Relations Commission has made recommendations as well in the context of the need for legislative support in the area of advance health care decisions, living wills or testaments or whatever one wants to call them. The bottom line is the commission asks some fundamental questions as to what medical professionals can do in terms of assisting a patient to live longer and more comfortably and whether the patient always has the right to decline medical intervention in advance of he or she knowing what may be the outcome of such interventions.

Deputy Twomey has strong views on this. This legislation was presented previously but ran out of time and had to be resubmitted. There are many, not only Members of this House but in broader society, and members of the Deputy's profession, who have strong contrary views, and rather than being divisive on it, we should bring about some sort of informed discussions and bring society with us on whatever road we are thinking of travelling.

People will have major concerns about this. Vulnerable persons, quite rightly, will have concerns about it as well. If one looks through the detail of the Bill, and this is an issue we could probably discuss on Second Stage because it goes to the heart of the Bill, there is no provision, because it requires one or two witnesses, to deal with a situation where families or the guardians of an individual could bring pressure to bear on such persons to make signed advance health care decisions recommending no intervention in certain cases which could bring about a shorter life expectancy or a quicker death by natural means. This is a matter about which many would have concerns.

I propose we would not move this Bill on to Committee and instead have an informed discussion on the matter on the basis of the Gleeson report which we would present to the committee. It would be discussed and in the event of the committee coming to the same conclusions as are in this Bill, we could discuss it at a later stage or indeed whatever legislation would be recommended by the committee.

We should not be divisive. I do not want to fan flames of concern that exist. I do not agree this is a first step to assisted suicide or euthanasia, but there are many who believe it is. We should not instil fear unnecessarily. Every day of the week decisions are made in consultation with patients which I do not want to discuss and which we all have had. Every family will have them at some stage in their lives. It will be either about oneself or about one's loved ones, but at some stage we all will have these discussions as to whether invasive surgery is required in terms of the treatment of cancer or the person being allowed, without any more invasive surgery, to avail of palliative care and end life naturally. These matters are discussed continually.

On the necessity for this legislation, one could argue whether it complicates matters and makes front-line decisions difficult for medical professionals. Such persons make life and death decisions daily and we are potentially tying their hands. With the advances in technology as well, persons could be making decisions today about treatments which may be more advanced in a number of years to the point where they could have an impact on quality of life.

Deputy Caoimhghín Ó Caoláin

I welcome this Bill and I commend Deputy Twomey on bringing it forward. It provides a welcome opportunity to address an issue with which we are only beginning to come to terms as a society. I do not believe for a moment Deputy Twomey or his Government colleagues propose to bulldoze this Bill through without all the appropriate consultation and engagement across the widest possible plateau of opinion.

People are living longer. Medical science is expanding all the time and, in developed countries at least, 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 persons with long-term illnesses is equally challenging.

We are also faced with new dilemmas or at least dilemmas which were always with us and 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 mechanically. For many this is not a choice 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 to be a terminal illness may prove not to be so. However, many will wish to have the choice, and Deputy Twomey has already placed many such examples on the record. 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 and today provides such an opportunity.

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 or talk about that which faces us all. Last year the National Council on the Forum on End of Life, sponsored by the Irish Hospice Foundation, launched the "Think Ahead" project. Think Ahead is an initiative which encourages persons 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 his or her 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 which 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 is not legally binding and could be implemented only on a purely voluntary basis. If passed, the Bill would have the effect of giving a legal basis to end of life care preferences. It would allow for an instruction to refuse life-sustaining treatment and for the appointment of an attorney, who could make certain decisions on a person's behalf. A health care professional would have no legal liability when he or she follows an advance decision that he or she believes is valid and applicable to the condition being treated. A health care professional would thereby have a defence if he or she acted in good faith.

Naturally, complex ethical and legal issues remain to be fully teased out both in a wider public debate and, if the Bill proceeds, during its passage through the Oireachtas. This is a case in which we should proceed with caution. My approach, somewhat different from the last contributor, isfestina lente, let us hasten slowly but nevertheless progress the proposition and what is entailed in the legislation before us this morning. 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 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 the Minister of State, Deputy Kathleen Lynch, has ruled out inclusion of provision for advance care decisions in that legislation. Will the Government side explain why this is the case, especially since the Bill before us today is being proposed by a Government Deputy and, I understand, is not being opposed by the Government side? Ideally the two Bills would proceed in parallel or would form part of one comprehensive tranche 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 for treatment deemed lawful under the Mental Health Acts 2001 and 2008, where does it leave people with mental illness? It would appear to exclude them from any provision for advance care decisions. It implies that people with mental illness do not automatically have the mental capacity to make decisions. We know, however, 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. We do get better and we can get well from mental illness arising during our lifetime. Our role and responsibility collectively on both sides of the House is to work together to arrive at the best possible content in the legislation. Therefore, if the Bill is to proceed and to be improved and if the mental capacity Bill is to leave out advance health care decisions, the apparent exclusion of people with mental illness should be included by way of amendment.

This demonstrates the wider need to modernise mental health legislation in line with the new UN Convention on the Rights of Persons with Disabilities. I commend the Irish section of Amnesty International on the work it is doing in this regard. Amnesty International has made the point that new capacity legislation should revolve around supports for people to make decisions for themselves or to 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 International also makes the point that advance directives which apply to mental health have been introduced in several countries, including Germany, Austria, Scotland, England, Spain, Belgium, Denmark, Estonia, Finland and Hungary. Other states are working towards providing for them. At the Oireachtas Joint Committee on Justice, Defence and Equality 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. Patricia T. Rickard-Clarke of the Law Reform Commission stated, "capacity legislation should include strong provisions on advance decision making, including advance care directives". She continued:

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 the inclusion of these measures in capacity legislation was re-enforced during the committee hearing by several contributors, including representatives from the Law Society, Professor Gerard Quinn of NUIG, Amnesty International, to which I have referred already, the Alzheimer Society of Ireland and the Mental Health Commission.

Given the focus of part of my remarks this morning it is appropriate to refer to some failures. My remarks are for the attention of the Minister. There has been a failure thus far to appoint the 414 mental health positions promised for this year. The Minister of State, Deputy 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 but 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?

An Ceann Comhairle

We must stick to the content of the Bill.

Deputy Caoimhghín Ó Caoláin

I am, indeed.

Deputy Jerry Buttimer

Deputy Ó Caoláin never does.

Deputy Caoimhghín Ó Caoláin

Has money for this been diverted somewhere else? These are serious questions and it is appropriate to flag them.

An Ceann Comhairle

They are part of the Bill, no doubt.

Deputy Caoimhghín Ó Caoláin

We need answers and, most important, we need to see people in all of these posts providing mental health care for adults and children. I commend Deputy Twomey on his welcome work. Much remains to be done with the legislation in the time ahead but I have no doubt that this is Deputy Twomey's understanding as well. I agree that this should not be rushed. The appropriate consultation and engagement to which I referred earlier is part and parcel of his intent and, with the Government's support, I look forward to that unfolding in the time ahead.

Deputy Clare Daly

I will be brief since Deputy Ó Caoláin robbed some of the points I had intended to make in respect of raising the issue of Amnesty International's concerns on mental health aspects of the Bill. I welcome the fact that Deputy Twomey has tabled this legislation. I will strongly support it on Second Stage. It is important that we articulate these issues and begin to discuss them as a society. In that context, this is a welcome Bill which will provide for the polar opposite scenario of that outlined by the Fianna Fáil Party spokesperson. It is disingenuous to suggest this legislation will result in elderly and sick people being frogmarched into signing declarations against their will. Such a scenario is completely contrary to what it is designed to achieve. One cannot achieve consensus on an issue that is about recognising an individual's right to choose and supporting his or her decisions, whatever they may be and regardless of whether one agrees with them. This is a human rights issue related to the right of individuals to dictate what happens to their bodies and lives on condition that their wishes are not detrimental to society as a whole. It is not an issue on which consensus must be achieved. The purpose of the Bill is not to force people to make the decision one wants them to make but to ensure respect for the decisions people make for themselves. I am glad Deputy Liam Twomey has introduced legislation to provide for this welcome outcome.

The weight of legal opinion recognises the right of a competent person to decide on the nature of his or her medical treatment and refuse such treatment to facilitate a natural death. The Bill provides that a person may provide clarity on this issue by making an advance determination of his or her wishes and have them respected in the event that he or she loses capacity later in life. How could anyone disagree with that eminently sensible proposition which is respectful of the wishes of the individual? This is the direction in which society is moving. The legislation gives clarity to the concept of extending the power of attorney by allowing another person to make certain designated health care decisions on one's behalf. This is a welcome and necessary development.

The legislation works on two counts. First, it will assist those who wish to plan their medical treatment in advance, specifically future medical interventions that they may not want, for the purposes of avoiding an undignified death or enduring undesired circumstances. It gives clarity and provides that persons may make such a choice. Second, it will assist health care professionals whose position in this regard is somewhat unclear. This issue needs to be clarified and any decision made should be considered in the wider context of a person planning his or her entire health care provision in a broader context.

I recognise, as Deputy Liam Twomey has done, that the legislation does not address euthanasia or assisted suicide, which are entirely distinct issues. This is regrettable because many others and I would like them to be explored in a rational and comprehensive manner. We are at the start of a debate on these issues. There is a distinction to be made between the narrow focus of the Bill and euthanasia and assisted suicide. The literal meaning of euthanasia is "good death". Currently, it refers to the practice whereby a third party deliberately ends the life of a person with his or her consent. Assisted suicide refers to a person taking his or her life based on the advice or assistance of another party. We must explore these practices because both have a role to play. I respect people's decisions in these matters and while I accept that my view is not shared by everyone, it is an issue of recognising the rights of the individual.

The Bill provides for the introduction of advance care directives in which persons may indicate a refusal of treatment. It does not allow people to refuse basic care. While I am fully supportive of expanding resources and supports in the area of palliative care, in a small minority of cases - perhaps 5% - it is not possible to ease a person's pain and he or she is exposed to a severe, undignified and traumatic death agony. In such circumstances, I understand the reason a person may choose to end his or her life and die on his or her own terms at a time of his or her choosing. This issue must be explored.

An important shift is under way from a paternalistic approach to medicine and health care provision to greater patient autonomy and the full involvement of patients in decision making on their cases. Although the Netherlands was the first country to decriminalise and regulate voluntary euthanasia, surveys have shown that Irish attitudes to voluntary euthanasia are changing. For example, approximately 60% of final year medical students in at least one Irish university indicated they favoured euthanasia. If society does not address these issues, it leaves the door open for practices such as voluntary suicide and euthanasia to take place behind closed doors in an unregulated manner in which duress may come into play. We do not want this to occur.

The issues of euthanasia and assisted suicide may not come within the scope of the Bill, but this debate offers Deputies an opportunity to raise them. The enactment of the Bill will be a welcome step because it moves us one step along the road. It must also be considered in the context of broader reform of overall capacity legislation, including mental capacity legislation. As Deputy Caoimhghín Ó Caoláin noted, Amnesty International has expressed concerns about Ireland's capacity legislation. I do not propose to elaborate on the Deputy's contribution other than to note that last month's issue ofIrish Medical News reported that the Department of Health had advised that the heads of the mental capacity Bill did not address the issue of advance care directives. The failure of the Bill to cover people with mental health difficulties must be rectified, either in broader capacity legislation or this legislation.

I welcome the Bill and again congratulate Deputy Liam Twomey on introducing it. I also welcome the opportunity to discuss this issue. All civilised societies should be able to rationally discuss and defend the rights of the individual, provided they are exercised in a manner that does not damage the public good. The legislation is a welcome step forward and I will support its passage to Committee Stage.

Minister for Health (Deputy James Reilly)

I thank Deputy Liam Twomey for raising this important issue. All Deputies will acknowledge that there are serious deficiencies in this area which must be addressed. I also thank him for sharing his personal and professional experience with the House.

There is increasing recognition that advance health care directives can empower patients by giving them greater control over their treatment and care decisions. They are also regarded as an important instrument in fostering a patient centred health care model and strengthening partnerships between individuals and their health care providers. In this respect, I recently attended an informal meeting of European Ministers for Health in Denmark at which the issue of patient empowerment was the main focus of discussion. This morning I launched a new service by a public-private tri-partnership, if one likes, of the Mater Private, Charter Medical and Third Age, a voluntary group which is determined to ensure that as people grow older, they are allowed to continue to reach their full potential.

I propose to respond to some of the comments Deputies have made. Deputy Billy Kelleher who raised a number of issues is correct about the potential for the intent of the Bill to be misinterpreted. For this reason, we all have a duty to ensure we inform people about its true intent, that is, to empower patients or, in my view, citizens. It is not necessary to wait until one is ill to avail of an advanced health care directive and people should not do so because they can be revised at any time.

I take issue with the arguments made by Deputy Billy Kelleher. There will always be concern about people being placed under duress and stress. However, it should be borne in mind that the current legal position permits a will to be made with a single witness present. There are many people more likely to put somebody under pressure if or she has some property or other wealth to leave behind, so I do not think that argument can be carried in the same way as it was presented today. However, we need lots of time to discuss this. I know I have Deputy Twomey's agreement that we need time for a full debate to let everybody understand precisely what this Bill is about, because that is very important.

The Medical Council's ethical guidelines in 2009 state that doctors should take into account an advanced care directive made by a patient. Therefore, there is already a broad consensus among the medical profession that these instruments are useful as a guide to the patient's wishes. I agree with those who say - Deputy Daly alluded to it - that patients, as citizens, have a right to determine what they want. As a doctor, my belief has always been that we are there to advise, but it is up to the individual to take that advice or not. It is not up to us as professionals to impose our will and our values on the patient or the citizen.

Deputy Ó Caoláin claimed that the Minister of State, Deputy Lynch, opposed this. That is incorrect. She does not oppose it. The Department has been working on this for quite some time. Much work has been done and it was intended that this would be part of the mental capacity Bill. There will be serious difficulties with this Bill in its current format, and I know that Deputy Twomey accepts that. We will explore the possibility of making changes to rectify that on Committee Stage, but if it becomes impossible to do that for technical reasons, we will revert to our original intention, which is to put it in the mental capacity Bill. I commend the Deputy for bringing this Bill forward. It is an important and emotive point that touches all our lives. I agree with Deputy Kelleher that these are the things that the committee should be exploring in great detail.

Advance directives are not aimed at allowing people to request actions which are currently illegal in this country, such as euthanasia or assisted suicide. I would like to make that clear, because I was door stepped this morning coming out of that launch in Smithfield. I was asked whether this Bill was about assisted suicide. It is absolutely not about that. It is about allowing patients make decisions, when they have the mental capacity to do so, about what they want at the end of their day, such as whether or not they want to be resuscitated, whether or not they would like to be administered particular types of medication like chemotherapy. Thankfully, none of us knows what the future holds for any of us. I sat with a good friend of mine on Sunday morning and this afternoon I am going to his funeral. He was 55 and died of lung cancer, due to smoking. My views on tobacco are well known, so I will not go into that today.

Ireland currently has no specific legislation on advance health care directives. This has led to uncertainty about the legal status of people's health care preferences documented in advance health care directives, and whether or not they will be adhered to. It has become apparent that Ireland needs a legislative framework in this area. We are way behind many other jurisdictions and we need to catch up. Consequently, the area of advance health care decision making is one in which my Department has been actively engaged. We will offer all assistance possible to the Deputy, and I appreciate the support of others as well. This is an issue where we can put party politics aside.

I also agree with Deputy Ó Caoláin's comments on being afraid to talk about death. There has been a change in approach over the last few decades. There was a time in this country when TB was seen as a disgrace, and nobody would know that somebody in the family had it. That changed with the efforts of Dr. Noel Browne and the sanatoria and new drugs. Then the taboo issue became cancer. People did not want anyone to know that they had cancer, but now they are not afraid to talk about it because we know that it is not a death sentence and that we can often cure it. We also need to talk about death. I have always felt it is important that patients know the reality. I do not necessarily think that doctors should be giving them precise timelines, but they need to know the situation. As a GP, I could never live with the fact that I was not supposed to tell the patient he was gravely ill but the patient knew he was gravely ill anyway, the spouse knew but was not supposed to know because the patient was not supposed to know, and nobody discussed it. That is not to the good in my view. We need to prepare for death and we need to acknowledge it as an inherent part of life.

The purpose of the mental capacity Bill is to put in place a comprehensive framework to support persons lacking the mental capacity required to exercise their legal capacity in some or all respects. The Bill will reform the law in respect of adults who are vulnerable in the sense that they may lack some or all capacity to make important decisions for themselves. It will modernise the law on capacity, some of which dates back 200 years, and will bring Irish capacity legislation into line with current thinking and modern legislative frameworks worldwide. Given that advance directives are a tool for allowing individuals to make decisions regarding the kind of treatments they may or may not wish to receive in the future when they do not have capacity, the mental capacity Bill was considered to be an appropriate vehicle for providing a legislative framework for advance health care directives. Officials within my Department have been working closely with their counterparts in the Department of Justice and Equality in this regard.

I already mentioned the Minister of State, Deputy Lynch. She would be here today but she is at her daughter's wedding and I wish them all well.

Members will appreciate that the issues involved are complex. Detailed consideration of a number of topics, such as the role of the proxy decision makers, the definition of medical treatment, and how those with mental ill health can be accommodated, is required as part of any legislative solution in this area. Given that Deputy Twomey has now brought forward his Advance Healthcare Decisions Bill 2012, it is my intention to support it. Undoubtedly, all of the complex issues mentioned will have to be addressed as the Bill progresses. I look forward to a comprehensive discussion on Committee Stage. Should it become apparent that for legal and ethical reasons, the mental capacity Bill represents a more efficient and practical way of consolidating the law in this area, then this option may be pursued. I know that Deputy Twomey agrees with this.

I thank him for introducing this important Bill, which will undoubtedly touch the lives of many citizens and allow them to realise their health care preferences and values at a time when they may not be in a position to express those wishes. It will also be a helpful guide to the professionals who care for people in their time of distress towards the end.

Deputy Caoimhghín Ó Caoláin

On a point of information, I have no doubt the Minister of State may personally support all that we have been discussing this morning, but she did say what I quoted.

An Ceann Comhairle

Thank you Deputy.

Deputy Caoimhghín Ó Caoláin

She ruled out advance directives for the mental capacity Bill when she addressed a conference------

An Ceann Comhairle

We are in the middle of the Second Stage debate.

Deputy Caoimhghín Ó Caoláin

-----organised by Amnesty International on 3 April 2012. The record is very clear and I ask the Minister to refer his queries to her about the issue.

An Ceann Comhairle

Deputies Keating, Flanagan, Eoghan Murphy, Buttimer, Dowds and Stanton have indicated they wish to speak. We have an hour and half before the Minister responds and the proposer of the Bill sums up, so each Deputy has a maximum of 15 minutes to speak. I call on Deputy Keating.

Deputy Derek Keating

I welcome the opportunity to comment on Deputy Twomey's Bill which, I understand, he produced 18 months ago. The Bill deals with patients' end of life care and with their medical treatment, wishes and management. It will allow people to deal with those issues before they lose the capacity to make known their views.

I have discussed this issue with a number of people, who work in hospices for example. They tell me the general practice at present is that an advance health directive, given through a proxy or next-of-kin who has had a conversation on the matter with the patient, is generally respected by doctors and families.

I am reluctant to mention assisted suicide or euthanasia. I had no intention of doing so this morning, but I feel compelled to do so following Deputy Kelleher's contribution. He said he did not see those issues as part of the Bill but that many other people would. Given the number of times he mentioned the issues in his contribution, there is now more likelihood that people will raise them. We can see the forces at work here. The Bill refers to health care. I will say no more than that, for now.

Deputy Twomey is concerned that Ireland is lagging behind and that patients may be unable to communicate their care decisions to care givers if their wishes are not formally recorded. The current practice is that people who are dependent, unwell, have life-limiting conditions or are terminally ill have available to them a care plan which their care suppliers work out in detail with them or with their next-of-kin or proxy. The Bill, however, is directly related to situations where a person has a life limiting condition or is terminally ill and is being kept alive indefinitely by life prolonging treatment because a medical practitioner has, without consultation, decided to do so.

I do not want this matter to become another marketplace for the legal profession, who may seek to capitalise on the Bill. In the past, the legal profession have benefited handsomely from new legislation. That must not happen in this case.

I welcome Deputy Twomey's efforts to progress this issue. We need to clarify the management of people's wishes. We also need to acknowledge that a person is making an informed decision and is not acting emotionally. Sufficient safeguards, checks and balances must be in place to ensure a person receives sufficient support in making such an important decision.

An article in theIrish Examiner of 5 October 2009 was headlined, “Doctors who ignore living wills are breaching patients’ rights”. The article went on to say that “doctors who ignore a living will by forcing a patient to receive life saving care against their wishes could potentially be taking part in medical assault, it has been claimed”. It is worthwhile raising issues of extremes in this situation and how a patient’s wishes will be communicated. The Bill deals with this in some depth.

The Minister for Health has one of the toughest jobs in the country. The Government intends to get on with the legislative process. We should get on with this Bill. We should allow for full consultation. A number of issues will arise during the debate on later stages. It would be helpful to establish a working committee of officials from the Departments of Health and Justice and Equality, because the legislation will have implications for both Departments. That process would provide an opportunity for joined-up thinking. I would welcome the Minister's view on this suggestion. I believe it would be helpful in progressing the Bill.

I support Deputy Twomey's efforts and I welcome the Bill. The Government will support it and I urge the Government to find ways to enact it. The joined-up thinking to which I have referred would be helpful.

Deputy Terence Flanagan

I, too, welcome the introduction of the Advance Healthcare Decisions Bill 2012 by Deputy Liam Twomey. The Bill will allow individuals to decide in advance the extent of the medical treatment to be given when they are no longer able to make that decision, due to incapacity or illness.

There is no Irish legislation in this area but living wills are popular in the United States. A survey in 2007 found that 40% of the population of the United States have made a living will. In Europe, the adoption of living wills has varied from country to country. In Germany and Spain legislation has given binding force to advance healthcare directives while in England and Wales the legislation is linked to mental capacity regulations.

As someone who is pro-life and has ultimate respect for human life, I have concerns about the Bill and, in particular, about the complexity of some of the issues involved. For example, a person may change his or her mind about a living will and forget to update it. Such a person may not be in a position to communicate that change of mind, should he or she be incapacitated at the end of his or her life. We know that people who attempt suicide often regret doing so. How will such changes of mind be factored into the Bill?

I share some of the concerns expressed in the public domain that the introduction of living wills is a high-risk strategy that might lead, over time, to the introduction of assisted suicide or euthanasia. I welcome the remarks of the Minister and of Deputy Twomey that both are illegal at present. There is, nevertheless, a perception that the introduction of living wills may lead us down that road. Other Deputies have referred to this danger. I merely flag this issue.

In the United Kingdom in 2009, Ms Kerry Woolterton died tragically at the age of 26, having swallowed anti-freeze. Ms Woolterton was fully conscious when she was brought to hospital. She was clutching a living will and stated that she did not want to be saved and that she was 100% aware of the consequences of her wishes. The consultant sought legal advice and did not intervene. Some public concern was expressed that living wills should apply only when a patient does not have the mental capacity to make a decision. The case of Ms Woolterton was tragic. Her father blamed the doctors for not saving her life. We must be aware of situations such as this as we introduce this type of legislation. It would be a concern for accident and emergency units if people with living wills were hospitalised following the introduction of the legislation. I welcome the introduction of the Bill. However, we must tread with caution and take into account the experiences of other countries, in particular in the United Kingdom.

Deputy Eoghan Murphy

I will be brief. I wish to speak in support of Deputy Twomey and to congratulate him on introducing the Bill. I also thank the Minister for his comments and commend Deputy Keating on his contribution. I agree with much of what he said.

I was fortunate enough to study for an arts degree in UCD. My friends always asked me whether it was worth anything. As part of my philosophy course we did an elective on biomedical ethics. In the course of it we studied ethical questions relating to the State, society and medicine, in so far as advanced medical health care was concerned. We looked at everything from in vitro fertilisation, IVF, all the way up to end of life issues. We went from first principles and looked at the technology. It was incredibly informative and much of the reading I did at the time and the learning I experienced has informed much of my approach to these types of issues. I did not think at the time that I would have the opportunity to consider them as a legislator a few years on.

I support Deputy Twomey's Bill and much that it aims to achieve. The idea of empowering the patient and care, as referred to by Deputy Keating, at the end of one's life is incredibly important as well as how we view and discuss it. There is perhaps more to do. Deputy Twomey was gracious enough to admit that improvements or changes could be made to the Bill. One change which has been highlighted already has been brought to the attention of Members by Amnesty International regarding the advance directives that apply to mental health. I was given a briefing by Amnesty International and I read through it. I will refer to one issue that caught my eye. It relates to the Law Reform Commission's attendance before the Joint Committee on Justice, Defence and Equality to discuss capacity legislation. Ms Patricia Rickard-Clarke of the Law Reform Commission stated at the time that a person cannot refuse basic care but can refuse artificial life sustaining treatment. That is what people were trying to ascertain with the capacity legislation. She went on to say that, ideally, advance care directives should be a part of the capacity legislation. According to Amnesty International, if that advice were taken on board then section 6(8)(c) of Deputy Twomey’s Bill would have to be amended or deleted to allow for the use of such advance directives for people with mental health difficulties. I ask Deputy Twomey to consider that as we take the Bill forward to Committee Stage.

That is all I wish to say on the Bill but I wish to speak briefly about the Friday sitting. I will bore people because every time we sit on a Friday I talk about the sitting and the reforms that can be made. Usually I speak about how the Friday sitting could be improved but in fact there is much from the Friday sitting that we could take to improve other days that we sit. For example, for any of us to speak in the Chamber today we had to be present to listen to the debate. If we wanted to partake we had to indicate that to the Ceann Comhairle, listen to other people's views and then give our own. That does not happen in the normal course of debate. In addition, the speaking time was allocated by the Ceann Comhairle fairly and evenly among speakers. It was not just block-booked by the parties whereby one person would have 20 minutes and another only two. It is a much fairer way of doing business. Usually when I talk about reform in the Chamber I say that if the Chief Whip is listening he might consider adopting some of the reforms but at this stage I know he is not. Therefore, perhaps it might be incumbent on some of the newer Members in the House to come up with our own reforms to Standing Orders to ensure that we can improve the business of the House as we see that it needs to be improved because we are bringing fresh eyes to the Chamber in this new Dáil.

To return to Deputy Twomey's Bill, I congratulate him on it. He has my support. I look forward to following the Bill through Committee Stage and to participating in greater detail if I can at that time. I again thank the Minister for his remarks.

Deputy Jerry Buttimer

I dtús báire, ba mhaith liom comhghairdeas a dhéanamh leis an Teachta Twomey as ucht an Bille seo a thabhairt go dtí an Teach. This is an important Bill. I am pleased that the Minister is present. I am also pleased with the participation of Members in the Chamber. It is important to have a debate in an informed manner that is not provocative or emotive, and does not raise flags, create political footballs or intimidate or frighten people.

Many of us in this House are in receipt of e-mails, postcards and all manner of documentation from pro-life campaigners and about other aspects of health care. The Bill is about the important issue of advance health care. It is about the wishes of the patient. Of all the Bills I have heard presented as a Member of Seanad Éireann or as a Member of Dáil Éireann, Deputy Twomey's opening remarks were perhaps the most honest and commendable of all when he said that it was not perfect legislation, it was work in progress that he wished to be advanced further and to encompass all views. That is the way it should be.

The Minister is correct; what we must avoid is misinterpretation and scaremongering to the effect that we are on the road to euthanasia or assisted dying. We are not. No Member on this side of the House or among the majority of those on the other side of the House is prescribing that. It is important that this message emanates from the Chamber today. This is about advance health care; it is about what patients want.

Many of us who have had the privilege of being in a hospital room with a member of our family who was dying, or with a constituent or friend seeking advice, information or friendship will understand that the last few hours and moments are precious and we will never forget them. None of us has a say in when we come into the world and when we leave the world. That is the bottom line. That is the way it should be. Our life is a gift. However, what we must do is assist people who are ill to get care – be it palliative care or medical treatment – for their illness. I very much welcome the Minister's speech and the clarity he brought to this important issue. As Chairman of the Oireachtas Joint Committee on Health and Children I would very much welcome the Bill back to the committee. I am sure Deputies Ó Caoláin and Kelleher who are pivotal members of the committee, as are Deputy Keating and Deputy Dowds, would very much welcome it as part of our work programme. We will discuss our work programme with the Government Chief Whip, Deputy Kehoe, the Minister for Health, Deputy Reilly, and Deputy Twomey. The Bill is something on which we could work.

As Deputy Kelleher alluded to in his remarks, the structure of health care is evolving. The quantum of care and ability of medical technology and advances ensure that health care now is different to what it was five years ago and even five months ago. Life is complex and health care is complex. The sentiments underlying the Bill and the proposals contained in it are sound. It is about the wishes of the patient, which must be at the centre of any decision-making process in health care whether it relates to a patient's relationship with his or her GP, consultant, consultant oncologist or whoever else. I was heartened by the Minister's remarks. From my experience in dealing with a GP or consultant they have always been upfront and honest. We do not have the ability to put a time line on a person's life.

We were all briefed by Amnesty International prior to today's debate. I compliment it on the briefing provided. It is important that the mental capacity issue is examined. As the Minister indicated, it is a complex issue. We must appreciate that the issues concerned relate to people.

I welcome the Bill. As the Minister indicated, it is about time that we spoke about death. It is a natural part of life. It is the end of our life which faces us all no matter who we are, from the head of state to the person who is just born today. In saying that, it is important that we do not use the Bill as a political football but as a means to achieve what Deputy Twomey is seeking. It is important in examining the Bill to ensure that all health care directives must be legal within the jurisdiction of this country. Deputy Stanton has done much work in this area in the Joint Oireachtas Committee on Justice, Defence and Equality. A report has been published on the matter. The Bill is opportune. We could move forward on a joint platform with the justice committee and work together on the issue.

We must also examine other aspects of the Bill such as health care proxy. For this reason, the civil partnership Act was one of the most important developments of recent times in that it allowed a partner in a same sex relationship an opportunity to be involved in making decisions on a loved one's health care. For example, the partner could be informed by a hospital consultant, participate in discussions and provide a link with the ill person. In this light, the question of having a health care proxy is important.

I commend Deputy LiamTwomey. The Bill represents the beginning of a journey and none of its supporters on this side of the House is promoting anything other than what it expresses, namely, advance health care decision that place the patient at the centre in consultation with health care professionals and family members. We must walk carefully, take our time and make incremental progress. I again thank the Acting Chairman for allowing me the time to contribute to the debate.

Deputy Robert Dowds

I commend Deputy Liam Twomey for introducing this important Bill and not shying away from something that is morally difficult. While my wife was a student, an Anglican chaplain told students that, when they were old, it would be their duty to decide on when they should die. It was a shocking comment to make. When I first heard such remarks, they sounded incredible, given that they had come from someone from a Christian background. For a Christian, humanist or a member of a major religion, the right to life is a central tenet. However, the man in question was making the point that, owing to medical advances, we had reached a stage at which people could be kept technically alive for a considerable length of time. As I grew older, I understood his point more. The Bill addresses this important issue.

I know of many people who entered old age with considerable fears and asked that medical interventions not to be made if they reached a stage at which they had no quality of life. As Deputy Liam Twomey told me during a conversation yesterday, a written request to this effect does not stand and must be ignored. It is important that people be given an opportunity to request that, with the possible exception of efforts to reduce pain, no further medical interventions be made.

It is welcome that the issue is being discussed in the open. It is key that each individual be able to make his or her own choice. Some have tried to make this choice in theory. In practice, however, it has not been possible. Every Deputy knows of people, family members or friends who, having lived fulfilling and productive lives, have reached a point at which they are lingering. Some of them would not want to be kept going beyond a certain point unnaturally. This option should be available to them. For this reason, I welcome the Bill which should be teased out carefully. As a member of the Joint Committee on Health and Children, I would welcome its detailed discussion of the Bill.

I do not wish to say much more. In addition to the individual giving consent that is verifiable through independent people, a consensus should ideally be reached between family members and medical professionals to the effect that there should not be further medical interventions. I agree with the Minister who stated terminally ill patients should be made aware of their position. It is important that people be kept informed. If they are facing death, they should be aware of this, instead of being conned. As Deputy Jerry Buttimer stated, the final days of people's lives are precious and they should be able to make peace with themselves and their families. The opportunity to do this is greater if they are aware of their position.

I look forward to the debate on the Bill and hope it will provide for those who decide to forgo unnecessary medical interventions when they lose their quality of life.

Deputy David Stanton

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 inThe 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.

Minister of State at the Department of Arts, Heritage and the Gaeltacht (Deputy Dinny McGinley)

On behalf of the Minister, who is unavoidably absent, I thank Deputy Twomey for raising this important matter and all the Deputies who spoke on the issue. There were interesting and thoughtful contributions to today's discussion. The Government recognises the importance of implementing a legislative framework relating to advance health care decisions, and we share Deputy Twomey's interest in progressing the issue.

Having heard the matters raised during the discussions, we are all no doubt even more aware of the complex issues relating to advance health care decisions. In light of the inherent complexities, it is essential that an appropriate policy and accompanying legislative framework to underpin advance health care decisions is implemented. We all agree that the primary goal should be to implement a framework that provides legal support and protection for people to exercise their autonomy with regard to future treatment and care decisions. I therefore express my thanks to Deputy Twomey for raising the issue, and the introduction of this Bill recognises both the need and the opportunity to develop legislation to facilitate such advanced decision making.

The Government accepts Deputy Twomey's Advance Healthcare Decisions Bill 2012 but in doing so, I highlight that issues relating to advance health care decisions are necessarily embedded in the wider context of the law on capacity. Given the forthcoming and highly anticipated publication of the mental capacity Bill, we should be mindful that the provisions within Deputy Twomey's Bill do not conflict with the provisions of the forthcoming Bill. I compliment the Deputy for taking the initiative in introducing the Bill and all the speakers on their contributions.

Deputy Liam Twomey

I thank everybody who contributed, and I particularly thank the Minister, Deputy Reilly, for accepting the legislation. Some very thoughtful contributions were made during the debate.

We all believe in setting out the ethos we want in our health service, which is to become more patient-centred than doctor-centred. There have been significant changes in the past number of years that may be forgotten. The Irish Medical Council now has a lay majority and allied health care professionals, like social workers and physiotherapists, must now register, with people having the ability to make formal complaints in a way that would have individuals censured as a result of inappropriate action. The Mental Health Commission was set up on the back of the 2001 legislation. When the legislation was published I worked as a general practitioner, and people argued that it would not work and that people with serious mental health problems would be running around unable to get help. That turned out to be rubbish and the legislation and the Mental Health Commission has had a positive effect on mental patients. It is dealing with many difficulties that have become clear to mental health patients. That shows we have much work to do in fine-tuning that legislation, which is more than a decade old.

HIQA has been in place for five or six years and when it was established, people argued that it would add nothing to the health service. Nevertheless, Ms Tracey Cooper and her staff have been significant drivers in improving standards in the health service, which benefits patients. All of these changes are radically shaking up thestatus quo and how our health service is perceived. They are adding benefit for patients, which is what we should be about. We must constantly put the patient at the centre of what we do, and this legislation does that.

I will go further. We must push forward with a patient safety authority that could put the patient above everything else. Such an authority would be an overarching body that would incorporate the functions of the Mental Health Commission, HIQA, the Irish Medical Council and all the other agencies. When such a body is formed, we can really say that we are putting the patient at the centre of the Irish health care service.

Another major issue mentioned this morning is the definition of capacity. There are complex legal issues surrounding the term but the problem is similar to the example outlined by Deputy Stanton when he mentioned that 40% of patients do not quite understand their medical treatment. That is probably true and it can be difficult to grasp every word said by a doctor if a person is in need of serious surgery or is having a serious medical condition explained. That does not mean there is no capacity to decide treatment, and we may be too purist in our approach to capacity. One can understand enough to know what one needs, and we must look at the issue from that perspective.

If somebody is depressed when writing an advance health care directive, it may be darker than if it had been done when the person was in great form, but does that reduce the impact of the intent of the directive? It does not, as it relates specifically to that person. When we debate capacity, we must bear in mind that although capacity is different for everybody, people understand far more than we take for granted. We can make such issues a bit too complex.

The essence of this legislation is that a patient can decide his or her quality of life until its end. It is in the final days, weeks and months of life that a person would like to have most control. That is what the Bill is concerned with.

Deputy Kelleher referred to changes in health care and how they could impact on somebody with an advance health care directive. The directive can be changed at any stage. One can renounce it orally if one wishes. The lifespan of a patient diagnosed with dementia is only a few years. Medical technology does not improve that quickly but it reduces the complexity of procedures and enables them to be undertaken with more finesse. For instance, open heart surgery was the norm 20 years ago whereas nowadays it is done via angiogram. It is less stressful and easier on the patient undergoing the procedure. A person could write in his or her advance health care directive that he or she does not want to have major surgery carried out but that may not need to be applied given the changes that could have happened in the meantime because the procedure may be easier to carry out. That is a positive aspect to this. The Deputy could be adding complexity to an issue that is not complex. I am only bringing my own experiences to this. Some of the concerns he has raised do not exist. This proposals will be beneficial to patients in the long term.

I also do not accept his comments about people being put under duress. One can have one's full faculties and be put under duress by family members. That has nothing to do with an advance health care directive. If anything, such directives can protect people because they can draw one up when they are in a better frame of mind and that will kick into play when needed rather than them coming under duress from family members when they are vulnerable. I have never witnessed duress being applied regarding somebody's health. Such duress usually comes about when someone is drawing up a will, which entails handing over property or money to an individual.

Deputy Billy Kelleher

That requires two witnesses or signatures.

Deputy Liam Twomey

That does not apply to health issues. The Deputy is adding a layer of complexity that does not exist. This is practical legislation. I have taken on board the concerns of Members. I am not precious about where the legislation goes but I would like to find the intent to be covered by legislation. I do not mind whether it comes under the mental capacity legislation or whether it is a stand alone Bill. There are pluses and minuses to both approaches. However, all we should look for is that advance health care directives are included in some Bill passed by the House to ensure we pursue the ethos we have adopted in recent years to make patients the centre of our health services. That is the approach we should take.

I appreciate the opportunity to discuss this and I also appreciate the remarks made by colleagues, which were positive and supportive, and that is important. I would like the Bill to be referred to the Select Sub-committee on Health to be teased out. The Irish Hospice Foundation, Amnesty International and other organisations have been involved in pursuing this. Dr. Siobhán O'Sullivan from the Department of Health, who is present, has worked tirelessly on this issue and she has good ideas in this regard. She shares many of my ideas, as do many other people. There is a consensus on this issue but it is time to give legal effect to advance health care directives that people have and that they want included on their medical files in order that when doctors and nurses make decisions about them, their views will be taken into account through the directives.

I thank everybody for attending and I hope the Bill progresses.

Question put and declared carried.

Dáil Éireann debate - Friday, 8 Jun 2012

Advance Healthcare Decisions Bill 2012: Second Stage

Dáil Éireann debate -
Friday, 8 Jun 2012