Seanad debates

Wednesday, 23 October 2019

Assisted Decision-Making (Capacity) (Amendment) Bill 2019: Second Stage

 

10:30 am

Photo of Maire DevineMaire Devine (Sinn Fein)
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I move: "That the Bill be now read a Second Time."

I am delighted to bring this Bill to Second Stage. I thank the Minister, Deputy Harris, for being present. I am expecting Mental Health Reform representatives to attend after their day-long briefing in the Davenport Hotel, which was very interesting. They are warriors who play an important role, along with all the other groups that raise community, well-being, mental health and disabilities issues, with the mantra "Leave no one behind". They are tireless campaigners for good mental health practice and we are indebted to them for the work they continue to do. We continue to listen to them, be guided by them and be advised by them. They are on the ground and they see the practicalities of legislation that has impacted upon many people's lives in a very negative and damaging way. I also welcome to the Visitors Gallery Deputy Pat Buckley, who is the Sinn Féin Dáil spokesperson on mental well-being and who was directly involved in this Bill.

We can look back and say that we have come a long way from the dark ages of the 1800s and the Lunacy Act, which is not long revoked in this country. Under that Act, anyone could be incarcerated for life on the whim of another person, such as a family member, a priest, a policeman or somebody with money who was esteemed in the local village or town and who could get somebody incarcerated in an asylum for life for a minor misdemeanour, often where financial gain was to be had. We have come a long way from that in seeking equality and inclusion for all and treatment for all who are vulnerable and in need of care.

The Assisted Decision-Making (Capacity) Act 2015 established a number of new legal provisions to address the issue of consent and capacity in regard to healthcare treatments for patients. One such provision was the statutory right to develop and have respected as practicable advanced healthcare directives. Advanced healthcare directives are documents in which a person specifies what action should be taken for their health if they are in the future compromised and no longer able to make decisions for themselves because of illness or incapacity. A well-known example of such a directive is what is called a DNR, the "do not resuscitate" instructions often hanging at the end of a hospital bed. This means that should a patient ordinarily require life-saving CPR or ventilation, that treatment will not be administered.

The Assisted Decision-Making (Capacity) Act 2015, while providing for directives, excludes people who are being treated as involuntary patients in the mental health services. The Bill before the House today seeks to address that. An involuntary patient does not, by definition, lack the capacity to make decisions about his or her care, welfare and future. This is very clear in legislation, despite the exclusion of such patients from the right to advanced healthcare directives. This Bill aims to give involuntary patients access to advanced healthcare directives like everybody else. There is no solid evidence or argument for not doing so.

To make a distinction between voluntary and involuntary patients is clearly discriminatory under the UN Convention on the Rights of Persons with Disabilities. Article 12 of the convention states, "persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life", and Article 14 states, "the existence of a disability shall in no case justify a deprivation of liberty". This clearly shows that where a person has the capacity to make a decision for himself or herself and is discriminated against on the basis of other factors, this is in violation of his or her human rights and the mere existence of a mental health problem does not reach the level of a factor which removes capacity or justifies the removal of these basic rights.

We have done this far too frequently in the past. As I said, we have come a long way. In the past, for a person deemed by someone of so-called importance to be incapacitated, that person's life was finished and he or she ended up in circumstances which he or she had to endure the rest of his or her life because the powers ranged against that person were too powerful to overturn. We are still discriminating in that somebody who is an involuntary patient cannot be brought along in the same way as a voluntary patient under the Assisted Decision-Making (Capacity) Act 2015. Everybody has capacity and we just determine how much that is, so everybody should be able to retain the right to make advanced healthcare directives regardless of their legal status within the mental health care system.

The use of differential standards reinforces the notion that the preferences of individuals with mental health conditions are not respected equally. This Bill will help to destigmatise involuntary status and recognise patients as people who have agency and human rights that should be respected. The legislation is important in terms of patient recovery. Advanced healthcare directives can be particularly important in mental health care, where empowering people to involve themselves in their care recovery is shown to help and improve outcomes. A survey of 600 psychiatrists, psychologists and social workers in 2006 showed that the vast majority thought advanced care planning for crisis would help to improve patients' overall mental healthcare. The findings of a national study published in the journal, Ethics, Medicine and Public Health, suggests an urgent need for legally binding advanced healthcare directives for those who have been involuntarily detained under mental health legislation to provide a sense of control over future treatment, to enhance recovery, and to promote trust and respect.

The Minister is aware I have had a long professional career in mental health and psychiatry as a nurse. I know the idea of trust and respect is paramount when working on a therapeutic level and trying to help people to get back to their lives without too much distress. I often think of the times when people were involuntarily detained, and of the screaming, the dragging, the police and the whole terror around it all. The one thing they would say was, "They gave me ECT the last time. Please do not let them do this to me again. I beg you, please." As they got sicker, they were considered involuntary and they were administered ECT. They were in horror when they woke up and realised what had been done to them, but they had no choices and no individual right to say, "No, and I want you to respect that."How, then, do we expect those patients to come back to us with an open mind and heart and a willingness to collaborate in their treatment? It goes against the grain of a duty of care. This Bill will correct that to a greater degree and I ask the House for its support in relation to it.

The US National Institute of Health at Duke University states that advance healthcare directives in mental health enhance involuntary patients' treatment satisfaction and perceived autonomy and improve treatment decision-making capacity among those labelled with severe mental illness. With regard to fears around refusals of treatment, there is international evidence and national research which suggests that mental health service users or patients, whichever term Senator Kelleher prefers, are not interested in refusing all treatments and are more interested in using the directive to agree treatments with their consultants and psychiatrist and to opt into certain treatments over others based on their own treatment history and experience, which are things we must listen to and allow for. Evidence further suggests the majority of advance healthcare directives include clear and valuable information, are consistent with clinical practice and can improve the quality of treatment decisions.

We have long waited for the rewriting of the Mental Health Act. In fact, we have waited too long. The Minister of State with responsibility for mental health has not changed mental health law with the exception of the closure of a loophole at the demand of the High Court which was fasttracked recently by both Houses of the Oireachtas. This is not good enough. The Assisted Decision-Making (Capacity) Act 2015 which provides for advance healthcare decisions for voluntary patients only has not even been commenced. This is the third Bill I have brought before the House notwithstanding the fact that I do not have an entire Department behind me. While the Minister of State procrastinates, for whatever reason, people are suffering from the delay. The Bill aims to address one aspect of their suffering. I hope it will pass today. We can wait no longer for meaningful change for those living with mental illness.

Photo of Fintan WarfieldFintan Warfield (Sinn Fein)
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I commend Senator Devine on this legislation which cuts to the heart of mental healthcare in the State and the agency we provide to those receiving healthcare from the State. In particular, the Bill seeks to provide for current advance healthcare directives legislation to be extended to involuntary patients.

An involuntary patient does not, by definition, lack the capacity to make decisions about his or her care. This is very clear in legislation, despite the exclusion of such patients from the right to advance healthcare directives. That exclusion foments a stigma around involuntary patients to the effect that they are somehow incapable of making these decisions when this is, largely, not the case. For example, between 2,000 and 2,500 people are detained against their will in psychiatric facilities every year. In these facilities, they can be forcibly injected with medication, physically restrained by staff and locked in isolation. This can happen easily by order of a GP, which can last for 21 days before the patient's case is reviewed by a mental health tribunal. It is typical in cases where a patient experiences spells of having capacity and lacking capacity, including in respect of illnesses like schizophrenia. Healthcare responses must be led by the idea that if a patient can assert his or her capacity and wishes not to undergo specific treatments, that capacity must be upheld and respected. It is also important that where a patient's mental health is further established prior to any tribunal, he or she is not subject to treatment which causes irreparable damage and which could have been avoided if capacity was considered.

When I consider this Bill, I think of the fact that homosexuality was removed from the diagnostic manual only in 1973. The stigmatisation of homosexuality ensured generations of gay men were subject to the likes of electroconvulsive therapy and chemical castration against their will. My own Prohibition of Conversion Therapies Bill 2018, which I hope to bring back to the House very soon, is a remedy for the ongoing coercion of the LGBT community into so-called therapies which can cause a person irreparable damage. In addition, I note Senator Devine's work in this field. This is further necessary amending legislation which she brings forward in addition to the Mental Health (Capacity to Consent to Treatment) Bill and the Health (Exemption of Charges for Involuntary Psychiatric Patients) (Amendment) Bill 2019. Her work and that of Deputy Buckley in the Dáil, as well as of many other parliamentarians in the Houses who champion mental health and continually bring forward robust responses to mental health needs in the State, should be commended.

Photo of Fintan WarfieldFintan Warfield (Sinn Fein)
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What is needed is a robust overhaul of legislation via a new mental health Act, whether it is to implement the recommendations of A Vision for Change, which is now 13 years old, or the various reports completed in the intervening years. The State's response has left us with out-of-date legislation as evidenced by the discussion today. That response upholds stigma and provides inadequate healthcare. I commend Senator Devine on her work in this area and encourage the Minister of State and all Members to give the Bill their full support.

Photo of Jerry ButtimerJerry Buttimer (Fine Gael)
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I commend Senator Devine on her work. Mental health is an important area. If we are to have an honest conversation, our journey over the last two decades has been monumental. That is evident in the fact that there is a debate tonight seeking further reform, progress and commitment to recognising the importance and centrality of the person as opposed to a statistic, entity or someone on a list. It is about ensuring somebody who is actually a person to be treated with dignity and respect. I commend Senator Freeman who Members may not know received an award in Cork recently for her work on mental health.

Photo of Jerry ButtimerJerry Buttimer (Fine Gael)
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When we commended Senator Bacik on the Order of Business yesterday, we should have commended Senator Freeman also.

The ethos and thrust of the Bill are to improve the provision of mental health services. In the transition from the old, archaic and inhumane buildings and wards of the past, we have put in place a different structure and environment on which we can build. I am conscious of the work of my friend and former colleague, Liam Twomey, in this area. Arising from the Assisted Decision-Making (Capacity) Act 2015, we have seen a new test for capacity, the putting in place of decision-making supports, decision-making representatives and an end to wardship. There is a new regime which provides for powers of attorney, which is important. We all agree with the more humane approach that is being taken in today's society. We all agree that the patient deserves and requires a voice and a say in his or her treatment plan. Equally, it is important that those of us who are advocates have that voice and participation right. I say that as someone who works with a lot of people in the disabilities sector. Advocates are very strong and a real requirement. Senator Warfield referred to the LGBT community and I concur with the sentiment he articulated.

The fundamental point is to ensure the voice or will of the person receiving mental health treatment is heard and respected.The Mental Health Act 2001 is the law that governs how we operate. One of the biggest failures in mental health services is the lack of a joined-up approach to the area of recovery. There is a need to have a treatment plan for individual patients from beginning to end and then from discharge out into the community where there is a continuum of support and care given. Too often when the patient is discharged or stops attending a particular organisation we tend to think that everything is fine. A further structure needs to be put in place, a layer not of bureaucracy but of supports, around the issue of a recovery plan.

Some of what we have been doing - Senator Freeman made reference to it earlier in her speech in the debate around the mental health committee - helps to remove or reduce the stigma of mental ill-health. In my 12 years in this House and the Lower House, I have always been a champion of bipartisanship and cross-party co-operation in committees, whether on mental health, the women's caucus, the eighth amendment or LGBT issues. It is about bringing people with us rather than dividing and conquering. In fairness, in the area of mental health, we have seen much progress because there has been such a co-operative collegial approach.

The Government is not opposing the Bill at this Stage. However, we need to look at how, in areas where we find commonality, we can take it out of the bear pit that is the political chamber so that we can advance the cause, especially in the area of mental health. For too long, mental health has been the Cinderella of the health service where people were locked away and were afraid to talk about it. Suddenly, with A Vision for Change, everybody came out from behind the wall and into the community. In my humble opinion, there was no advanced planning. Proper supports were not put in place. We are playing catch-up now. In many cases, we are not succeeding.

We are lucky in the mental health sector of the health system to have wonderful people providing a large range of services. Whether it is the simple counselling element and the more complex psychiatry, it is phenomenal. However, we have a road to travel.

As I stated earlier, we spend €17 billion on health. I reiterate the point that there is something rotten in the state of Denmark when €17 billion in spending on the health system for a population of 5 million cannot achieve everything that we want. I accept that there will always be a deficit or gap. However, mental health is not income specific, geographically located or gender based, it is about people. Whatever else I have learned in my life as a politician, the issue of mental health is about the person. It is a complex matter. At one level, there but for the grace of God go I. That is why we as legislators have a duty of care and support to put in place structures and supports.

I commend the Minister of State, Deputy Finian McGrath, on the work that he is doing. I thank Senator Devine for her advocacy on the Bill today.

Photo of Keith SwanickKeith Swanick (Fianna Fail)
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I welcome the Minister of State to the House.

I commend Senator Devine on her work on this area and the Bill that she is bringing forward and also commend Senator Freeman on the vast amount of work she has done in this area. I welcome Deputy Pat Buckley to the House and commend him on the work he does in the Lower House with my colleague, Deputy James Browne.

As a general practitioner, GP, I am delighted to support this Bill. Fianna Fáil will be supporting this Bill which seeks to ensure involuntary patients in hospitals for mental health treatment will have their advance healthcare directives respected. Currently, involuntary mental health patients is the only group which is excluded from having a living will fulfilled. It is important to ensure that involuntary patients have a voice in their treatment and have their will and preference for mental health treatment fulfilled and respected.

I welcome the changes that have come about over the past number of years. As a young fellow growing up in Castlerea where there was a large mental institution, St. Patrick's Hospital with 400 inpatients, in which my father worked as a plumber, I often played up in its playing fields. They had a farm. In thinking of that time and the time from when I was a medical student working in Grangegorman to when I was a psychiatric registrar working under the medical director, Dr. Blennerhassett, in Portrane, the developments must be welcomed. On a day to day basis in the surgery, I am delighted to be treating patients in the community, keeping them in the community and not having to rely on these dreadful institutions where people were locked up inappropriately for many years. The situation is improving and it is great that we are having this debate here tonight.

The Assisted Decision-Making (Capacity) (Amendment) Act 2015 provides laws for advance heathcare directives. The Act was signed into law on 30 December 2015 but it is not yet in effect. A living will may be valid and enforceable. By making such a statement, one may have withdrawn one's consent to the specific medical or surgical treatment, for example, as Senator Devine mentioned earlier, a do-not-resuscitate request. It is not possible to state with absolute certainty that such a directive would be enforced because this depends on exactly what it says and whether it addresses the precise circumstances.

In some countries, it is possible to appoint someone else to make decisions on one's behalf if one is not capable of making them for oneself. In Ireland, this power is granted via an enduring power of attorney. I see this in my role as a GP but also as a medical officer in a small district hospital. An enduring power of attorney, however, does not specifically allow for the making of healthcare decisions by another person and while one may suggest to one's doctor or hospital that the wishes of certain persons may be considered, one cannot give anyone else any legal right to make decisions about one's healthcare. People can make advance healthcare directives about a broad range of issues, such as the type of medication they prefer, the type of therapies that suit and work for them best and, most important, to treatment refusals - treatments that they do not want - such as electroconvulsive therapy, ECT.

Under Irish law, people who are detained in hospital for mental health treatments are specific excluded from legally-binding advance healthcare directives. As a doctor, I find this deeply upsetting and deeply troublesome. That is why I am supporting this Bill today. This exclusion is contrary to international human rights standards, including the UN Convention on the Rights of Persons with Disabilities.

The Government has recognised that it is necessary to update the 2015 Act for Ireland to be compliant with the UN Convention on the Rights of Persons with Disabilities, which was ratified by the Government in 2018. In June 2016, the then Minister of State at the Department of Health with responsibility for mental health, Deputy McEntee, publicly stated that the draft legislation to reform the Act would be completed by the end of that year. I understand that delays happen with legislation but since then, numerous dates have come and gone. Numerous dates have been given for publication of the draft legislation and none of them have been met. These delays are problematic given the lengthy duration of the review of the Act and the seriousness of the gaps in human rights protections, both for adults and children, receiving inpatient and mental health treatment.

As a GP and as a member of Fianna Fáil, I am happy to support this Bill to ensure that the most vulnerable who often do not have a voice - involuntary patients in mental health institutions - will have their wishes respected. As I stated, it is a basic human right. My party is happy to support this. Once again, I commend my colleague on her work in this area.

Photo of Joan FreemanJoan Freeman (Independent)
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I welcome the Minister of State. I thank Senator Buttimer for his kind words and acknowledgement. His insight into mental health services was very intelligent and compassionate, not just now but also earlier today. The reason I keep pushing the committee is to address the question of what is happening with the money. We have a population of only 5 million. Addressing the question was the purpose of the committee. I agree with absolutely everything Senator Buttimer said.

I commend Senator Devine. She and I have been fighting the same battle for the past three years. We are allies in fighting. I have learned over the years that I know very little about most things. Therefore, I have always surrounded myself with experts. The Minister of State has an expert here today in Senator Devine, who was immersed for most of her adult life in psychiatric care. She knows exactly how it should work and what should happen to make it work. Her Bill is important because it is one more step towards removing the stigma associated with mental illness.

There are two personal points I wish to make. I went to the doctor recently with a certain medical issue and he advised me what treatment I should opt for. I had the right to accept or reject the treatment. Just think how disempowering it is if someone who is brought into the mental health services involuntarily is ignored and not included in his or her own treatment and life. How weak, fragile and unheard one must feel when somebody does not listen to one and include one in the decision.

On the second personal point, my husband and I are in the throes of enjoying power of attorney, which was mentioned by Senator Swanick. We are selecting somebody but we are also in the throes of dealing with a living will. We have the capacity, respect and dignity to be able to do that. For God's sake, can we not accord that same dignity and respect to the most vulnerable?

I do not know whether the Government will support Senator Devine's Bill. It would be an absolute tragedy and disgrace if it were not supported. I am aware the Minister of State is open to it. Having listened to Senator Buttimer, I believe and genuinely hope there will be support for Senator Devine today.

Photo of Colette KelleherColette Kelleher (Independent)
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I welcome the Minister of State and commend Senator Devine for introducing this Private Members' Bill. I compliment Deputy Pat Buckley and his Sinn Féin colleagues on this progressive legislation, which should, and I expect will, attract cross-party support.

As a psychiatric nurse by profession and having served with Senator Freeman when she chaired the Joint Committee on Future of Mental Health Care and on the cross-party alliance and the all-party Oireachtas group on dementia, I am aware that Senator Devine knows her stuff. She is a very powerful advocate for the underdog and for those who are hard to reach. She is an advocate for ensuring that voices that are seldom heard or not heard at all are indeed heard. She combines practicality, compassion, humour and an unwavering belief in making real human rights for those who may be vulnerable and end up in trouble. It is not just pie in the sky. I am delighted to be here today to speak in support of the Senator's Bill.

Assisted decision-making is about honouring people's will and preference, not the paternalistic best-interest concepts that for too long took power away from people and made their will and preferences second order to the convenience of others or even to abuse, incarceration or exploitation. I know what I speak about because I remember some of the treatments a close member of my family received for her mental health conditions. These included over-medication and electric shock treatment, to which I very much doubt she ever consented. Her mental health issues were largely created by a coercively controlling marriage relationship with someone who was, of course, of good standing in the world but not so nice at home. This Bill's welcome focus is on people who experience mental health issues and their treatment under the Mental Health Act 2001 and the Criminal Law (Insanity) Act 2006. This Bill, if passed, will do a very important thing; it will remove the current exclusion of people with mental health difficulties under Irish law from having legally binding advance healthcare directives provided for in Part 8 of the Assisted Decision-Making (Capacity) Act 2015. As said before, this exclusion is contrary to international human rights standards and the UN Convention on the Rights of Persons with Disabilities.

Treatment is fundamentally about consent. Section 83(2) of the Assisted Decision-Making (Capacity) Act 2015 clarified that an adult who has capacity is entitled to refuse treatment, for any reason, even if it seems unwise to others or not based on sound medical principles or if it may even result in death. An advanced healthcare directive allows a person who has capacity to state what treatment he or she does not want in the event that he or she loses capacity in the future. In this way, we can all provide now for our capacitous voice to be heard in the future. To make an advance healthcare directive in the first place, a person must have capacity, but the directive actually comes into effect only when we do not have it. As the law stands, an advance healthcare directive does not have to be complied with if, when one loses capacity, one is detained under the Mental Health Act, and if it relates to the refusal of mental health treatments. In other words, one can refuse antibiotics but one cannot refuse antipsychotics. This exception offends against parity between physical and mental health and it overlooks the fact that those with mental ill health, as with those with physical ill health, are often accomplished experts in their own care. We often know best ourselves what is best for ourselves. The exclusion of an individual with mental health difficulties is discriminatory and cannot in any way be fair, right or justifiable. This Bill would remove section 85(7), containing the exception. According to the Decision Support Service, which is in favour of the Bill, this is very good.

Senator Devine's legislation very much complements Deputy Brown's Mental Health (Amendment) Act 2018, which received cross-party support in both Houses. The latter was all about the environment of people with mental difficulties such that they could be given more choice and control over their treatment. Senator Devine's Bill follows in the same vein and has the support of Mental Health Reform and 75 member organisations. This Bill is also supported by Safeguarding Ireland, which highlighted that this issue was raised as far back as 2014 in an expert report on the Mental Health Act. As previously mentioned, there is an argument that section 85(7) is not in compliance with the UN convention, for whose ratification the Minister of State fought so very hard.

A person with mental health issues should and must have the same rights as all others relating to advance healthcare directives and more. For the sake of, and with respect for people with mental health conditions, who must be always first among equals regarding their health and treatment, I fully support Senator Devine's enlightened Bill. I wish it safe passage through both Houses and into law so as to have a better, more respectful and equal day for those experiencing mental illness.

Photo of Ivana BacikIvana Bacik (Independent)
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I welcome the Minister of State to the House. I commend Senator Devine and her colleagues in the Sinn Féin group on proposing this important and enlightened Bill. I am delighted to support it on behalf of the Labour Senators, along with others. I am really pleased to see it is receiving such great cross-party support. I hope the Government will also support it. We all look forward to the Minister of State's speech because it seems this Bill is a sensible step in the overall progress we are making towards more comprehensive mental health services reform.Others have spoken about our long and shameful history of incarceration of persons in psychiatric institutions and over many decades, particularly throughout the 20th century, we saw very high levels of incarceration in State-run psychiatric institutions. A number of my Trinity College colleagues have done a lot of research on this, notably Damien Brennan, whose text, Irish Insanity, makes the point that Ireland had far higher levels of incarceration in psychiatric institutions than any other European country for many decades of the 20th century. We detained and confined people in institutions and many of them, sadly, became institutionalised as a result. We did this without any of the safeguards we should have had and which we eventually introduced.

We are coming late to the reform of mental health procedures. The Mental Health Act 2001, which is now subject to justified criticism, was itself important reforming legislation and was a huge improvement on what had gone before. There have been other steps since then, with progressive stages of reform, but we are still a long way off the system that should be in place in a modern European state in 2019. I know the Minister of State agrees with this. The national mental health strategy of 2006 set out A Vision for Change and made some important recommendations. That was followed by the predecessor of the current Minister of State, my Labour Party colleague, Kathleen Lynch, who had huge commitment to mental health reform and who instituted a review in 2012 of the 2001 Act which resulted in a range of recommendations, only some of which have been implemented. I was a member of the justice committee which conducted a series of hearings prior to the enactment of the Assisted Decision-Making (Capacity) Act 2015 around the need for reform of capacity legislation, particularly in the area of wardship. In many areas, reforms have been debated and discussed but we are not seeing their full implementation and we are falling short of the standards we should have, particularly as we have ratified the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD.

I am grateful to the NGOs that have been briefing us on this, in particular Mental Health Reform and Justice for Wards, which has provided us with information. As they point out, we still fall short of UNCRPD standards. Our 2001 Act is outdated and a number of important reforms need to be made. Others have spoken about another progressive step in the area of reform, namely, Deputy James Browne's Private Members' Bill, which was passed last year in a spirit of co-operation across the Dáil. This Bill is entirely in keeping with, and indeed complementary to, the reforms put forward in the 2018 Act. The Bill deals with just one aspect of the necessary reform of mental health law and, if passed, will provide involuntary patients in psychiatric institutions with the right to have their advance wishes about treatment respected and will extend the right to have advance healthcare directives for those who are detained in mental health services. Under the 2015 legislation, they would be excluded from this legal right. An advance healthcare directive is a statement set out by someone, when he or she has capacity to make decisions, about his or her preferences for future care and will only take effect if and when the person is unwell and no longer has decision-making capacity. It is a very important principle, like that of enduring power of attorney and Senator Freeman, among others, has spoken of her own experience of such matters.

We know of the experience of persons in psychiatric services. Mental Health Reform conducted a survey, My Voice Matters, and almost 40% of participants who used mental health services felt they were not involved as much as they would like in decisions about the medications they took. Permitting people in involuntary detention to make advance healthcare directives is an important way of ensuring people feel more listened to and that their wishes are respected. I am proud and happy to support this legislation and hope we will not divide the House on it. I commend Senator Devine and look forward to its speedy enactment.

Photo of Finian McGrathFinian McGrath (Dublin Bay North, Independent)
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I am pleased to be here this afternoon to discuss the Assisted Decision-Making (Capacity) (Amendment) Bill 2019, a Private Members' Bill introduced by Senators Máire Devine, Rose Conway-Walsh and Paul Gavan. I am here to represent my ministerial colleagues, Deputy Harris and Deputy Jim Daly, who were unable to be here today and send their apologies. I will, of course, brief them on the matters arising in today's debate. I particularly thank Senators Devine, Warfield, Buttimer, Freeman, Swanick, Kelleher and Bacik for their contributions. I also welcome Deputy Pat Buckley, who does a lot of work on this issue and makes a huge contribution to the debates on it in the Dáil.

This Bill seeks to amend Part 8 of the Assisted Decision-Making (Capacity) Act 2015 to ensure that patients who are involuntarily detained under the Mental Health Act 2001 will have their advance healthcare directives complied with. The Department of Health is supportive of the overall policy intention behind the amendment. In relation to those detained under the Mental Health Act 2001, the Department agrees that advance healthcare directives should apply to those detained under the Act on the same basis as they do to persons with physical illness. Therefore, the Government does not oppose this Bill. However, this position is subject to engagement with Sinn Féin to amend the Bill later in the legislative process to overcome various substantive and drafting issues that arise with it. I will outline these issues in more detail shortly.

An advance healthcare directive is a statement made by an individual with capacity setting out his or her will and preferences regarding treatment decisions that may arise in the future when he or she no longer has capacity. The purpose of these provisions is to provide a legislative framework for an adult individual to make a legally binding advance healthcare directive to refuse treatment. The advance healthcare directive has been recognised as an expression of an individual's autonomy and as a useful tool in enabling the individual to maintain some level of control over medical treatment into the future, when he or she lacks the capacity to express autonomous preferences. More and more people wish to continue to play an active role in their treatment decisions, even when they no longer retain capacity to do so.

Part 8 of the Act of 2015 puts in place a legislative framework to facilitate those people, who wish to do so, to outline their will and preferences for future treatment in the event that they lose capacity. Part 8 provides for an adult individual to make a legally binding advance healthcare directive to refuse treatment. In order to make an advance healthcare directive a person has to be over 18 years of age and must have capacity. In order for a refusal of treatment in an advance healthcare directive to be considered legally binding, the person must lack capacity to consent to the treatment at the time in question. The treatment being refused must be clearly identified and the specific situations in which the treatment refusal is intended to apply must also be clearly outlined. The provisions will also enable a person to outline specific treatment requests in his or her directive. These requests would not be legally binding but would have to be taken into consideration during the decision-making process relating to that person's treatment.

The provisions introduce a mechanism through which an adult with capacity may nominate in his or her directive a legal representative, who is aware of the person's will and preference, to be involved in the healthcare decision-making process on his or her behalf in the event that he or she loses capacity. This nominee is known as the designated healthcare representative. Evidence shows that advance healthcare directives are a useful tool in enhancing patient autonomy and empowerment. In the context of mental health, these directives can have a positive therapeutic impact for patients and play an important role in patient recovery. The recognition of patient autonomy and the application of the recovery approach are key components of the Government's policy on mental health, A Vision for Change, and are important considerations in the ongoing revision of the Mental Health Act 2001.Facilitating the participation of people with mental illness in making decisions regarding their treatment acknowledges that such people generally know best what works for them. The reason those detained under the Mental Health Act 2001 were excluded from the scope of advance healthcare directives was that when the Assisted Decision-Making (Capacity) Act 2015 was being drafted, a review of the Mental Health Act 2001 was also under way. It was decided that the review of the Mental Health Act 2001 should be completed before any change was made regarding the treatment of those detained under the Mental Health Act 2001.

The report of the expert group review of the Mental Health Act 2001 recommended the introduction of legislation providing for advance healthcare directives which should apply to mental health on an equal basis with general health. On that basis, the general aim of the Bill is in line with Department of Health policy. The previous Government agreed with the broad thrust of the recommendations of the expert group review of the Mental Health Act 2001 and approved the preparation of the general scheme of a Bill to amend the 2001 Act to reflect the recommendations of the review in revised legislation. Work is progressing in the Department of Health on these important amendments, with draft heads of the Bill currently with the Mental Health Commission for its observations. Some Senators referred to delays in this regard. It is essential that the Mental Health Commission, which has a significant and important role in overseeing the safeguards provided in the Act, has full input into the framing of the many amendments to be included in revised mental health legislation. This is a phase in the process and the commission likely to require a period in the region of six months to study and comment on the draft heads. I mentioned earlier that the Government does not oppose the Bill. However, I must again stress that there are certain issues of drafting and of substance that need to be addressed.

At present, there are four major areas of concern. The first is that for advance healthcare directives generally, a request for specific treatment is not legally binding on a healthcare professional but will be taken into consideration when a treatment decision is being made. Section 2(b) states that an advance healthcare directive shall be complied with in respect of treatment given. This appears to make a request for specific treatment by a directive-maker detained under the Mental Health Act 2001 legally binding on a healthcare professional, regardless of the appropriateness of that treatment, while a request from any other directive-maker is not legally binding. It is unclear whether this anomaly is intended or what is the policy justification for it. Either way, the implications for the operation of Part 8 of the 2015 Act could be significant and it could make the legislation susceptible to constitutional challenge on the grounds of equality. That is a concern and we must monitor the position in respect of it.

The second area of concern is that the Bill does not address the very specific scenario where an involuntary patient whose treatment is regulated under Part 4 of the Mental Health Act 2001 lacks capacity but has a valid advance healthcare directive that refuses all treatment. At the moment, a person who has capacity and is detained under the Mental Health Act 2001 can refuse all treatment and, in such circumstances, his or her detention could continue even if he or she is receiving no treatment. However, the expert group review of the Mental Health Act 2001 recommended that the criteria for detention outlined in the current Act be amended so that in future if no treatment is being received by the patient, then the detention should no longer continue. This change clearly reflects the view that psychiatric hospitals are where ill patients go to get treatment. Where an advance healthcare directive refusing all treatment is being invoked in the case of a patient who is being involuntarily detained and lacks capacity, the Department of Health will need to carefully consider whether such a scenario needs to be provided for, and what that provision should be. The question also arises as to whether such provision should apply only where another person's life might be in danger, where the life of the detained person may be in danger or where his or her health may be in danger.

The third area of concern is that, in addition to patients detained under the Mental Health Act 2001, Part 4 of the Mental Health Act 2001 applies to patients in a designated centre under the Criminal Law (Insanity) Act 2006, including those who are not fit to stand trial, who are not guilty by reason of insanity and who have been transferred from a prison to a designated centre for treatment of a mental disorder which they cannot receive in the prison. My colleague, the Minister for Justice and Equality, has noted that the provisions cited in section 2(a), namely, section 4(3)(b)(i) and (ii) and section 4(5)(c)(i) and (ii) of the Criminal Law Insanity Act 2006, only address committals where an accused is unfit to be tried. The Minister has informed me that the proposed amendments in section 2(a) should also apply to orders under section 5(2) and section 15 of the 2006 Act. Section 5(2) provides for a committal to a designated centre following a finding of not guilty by reason of insanity, and section 15 provides for a transfer of a prisoner deemed to be suffering from a mental disorder for which he or she cannot receive adequate treatment in the prison, to a designated centre in order to receive the necessary treatment. Failure to provide for these matters could cause a serious problem with the application of orders under the 2006 Act. The Minister for Justice and Equality would be particularly concerned that a situation could arise where a person who has in place a valid advance healthcare directive, refusing psychiatric treatment, may not be treated if he or she is detained in the Central Mental Hospital following a finding of not guilty by reason of insanity or following a transfer from a prison to the Central Mental Hospital.

The fourth issue is that the Long Title of the Bill seeks to bring about improvements for patients detained both under the Mental Health Act 2001 and the Criminal Law (Insanity) Act 2006. Subject to the previously outlined concerns of the Minister for Justice and Equality being resolved, the Long Title may need to be amended in respect of those who are detained pursuant to the Criminal Law (Insanity) Act 2006.

It is worth noting that the main provisions of Part 8 of the Assisted Decision-Making (Capacity) Act 2015 have not yet commenced, so while advance healthcare directives are on the Statute Book, no person can benefit from this legislation until further sections are commenced. Therefore, there is time to deliberate on the concerns outlined to form the basis of a considered view of how best to proceed. The Minister of State, Deputy Jim Daly, and Department of Health officials will work with the Senators to address these matters.

I commend Senator Devine and the other Senators involved on their work in this area. I also commend their commitment to work in the interests of the rights, will and preference of the patient.

Photo of Maire DevineMaire Devine (Sinn Fein)
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I thank the Minister of State for his detailed reply. I am delighted that he can support the Bill's passage through the House, albeit with many amendments. The Bill is good practice and policy and it gives respect and dignity. It furthers acceptance, inclusion and equality. It is about the risk to the human rights issues of somebody who is detained against his or her will and, as a result, stripped of dignity.

In addition to thanking the Minister of State, more importantly, I thank the NGOs, namely, Mental Health Reform and Mental Health Ireland, community groups and university academics that have had an input into the Bill. For too long, people with mental health difficulties were especially prone to being left out of inclusive development efforts. Psychosocial disability is frequently misunderstood and the capacities of people affected are often discounted and their power and responsibility is taken away from them and assumed by clinicians and institutions, even moreso with those who are involuntarily detained.Going back to the days of enlightenment, and considering how enlightenment occurs in every generation, this generation in particular has steamrolled into it and embraced it, as has the country. We have taken a slow course from the lunacy Act to having, as Senator Bacik said, the highest number of incarcerated people per population in Europe. We incarcerated more than were incarcerated in the Gulag, which is quite an astounding statistic and not one to be proud of.

This is about leaving no one behind, to use that much-used phrase we have all got used to. Leaving no one behind is also the moral issue of our age. We cannot achieve equality within society without the full participation of everyone, including those with disabilities. We cannot afford to ignore or marginalise those 2,000-plus individuals per year who find themselves incarcerated and detained against their will in this country. All of us in this House have fought against the exclusion, negative attitudes, stigma and discrimination. We all pledge to leave no one behind, a pledge in pursuit of which we need to accept and pass this legislation as a concrete action to deal with situations of persons finding themselves involuntarily detained.

We will make policy, and I am delighted the Minister of State supports this amending Bill. I thank him and look forward to discussion of the concerns he has rightly pointed out. They need a lot more thoughtful consideration and discussion to get us to a Bill that is fit for purpose. I thank all Senators. I did not think they loved me that much. I have felt very loved today, but more so-----

Photo of Gerry HorkanGerry Horkan (Fianna Fail)
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They just hide it well most of the time.

Photo of Maire DevineMaire Devine (Sinn Fein)
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I thank them for their thoughtful reflections and support. The rallying of the Houses, when we achieve it, is a great sight and a beautiful thing. Most of the time we snarl too much at one another, but that is the thrust of politics. The genuine support is very much appreciated. Hearing myself discussed as I was discussed makes me go a little scarlet. I hope we will all work together. I have great colleagues surrounding me with great progressive and innovative ways to brush away the cobwebs and the paternalism that was so rampant in this country and to look after those we need to hold tight and embrace and give them their voice and help them with it. I am delighted and I thank all Senators.

Photo of Gerry HorkanGerry Horkan (Fianna Fail)
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As somebody who is on a regional health forum with Senator Devine, I know how committed she is to many of these topics, particularly this one, so I say well done to her.

Photo of Maire DevineMaire Devine (Sinn Fein)
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I thank the Acting Chairman.

Question put and agreed to.

Committee Stage ordered for Tuesday, 29 October 2019.