Marie Louise O'Donnell (Independent)
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I move:

That Seanad Éireann –- conscious that almost 29,000 people die each year in Ireland and 290,000 people are newly bereaved;
- aware that contributors to the recent hearings on palliative, end-of-life and bereavement care at the Oireachtas Joint Committee on Health and Children identified that end-of-life issues are wider than health care;calls on the Government to put in place a review to explore the components of an overarching strategy on end of life and bereavement, which would have regard to the wider societal issues arising, including legal, financial, economic, educational and cultural aspects.

What a negative message and disproportionate burden that is on older people and their psychological security and peace of mind concerning funeral arrangements.
In other areas citizens have taken brilliant initiatives such as the Compassionate Communities project at Milford Care Centre in Limerick which seeks to work in partnership with individuals, groups and communities facing loss and those experiencing bereavement. The grief-at-work resources were developed in partnership with the Irish Hospice Foundation, the Irish Business and Employers Confederation, IBEC, the Irish Congress of Trade Unions, ICTU, the Small Firms Association, SFA, the Department of Jobs, Enterprise and Employment and others to help workers to support employees. In 2011 the Taoiseach launched the Forum on End of Life's think ahead initiative, a citizen-led planning tool that encourages and provides a way for people to think about and pre-record their wishes in the event of a serious illness. It highlights the importance of planning ahead to ensure an individual's right to make decisions for himself or herself is honoured.
The State must learn from these initiatives and catch up with community-led creative solutions. We need the panoply of State services to help us to think, talk and tell about dying, death and loss and enable us to support each other. We need to examine what we do and do not do brilliantly, pull all these strands together in a coherent whole and weave all the separate threads of good practice and support into a tapestry of our common humanity. I urge the Government, through the Minister and the Cabinet, to accept this proposal that it establish an advisory or working group to build on the initial work done by the Oireachtas committee. The group should be charged with the task of identifying all the components of a comprehensive end-of-life strategy and the actions required to ensure a better end of life. It should develop a strategic framework which identifies short-term minimal resources, highest priorities and medium-term and long-term outcomes, creating a blueprint for action to ensure people can live well at the end of their lives and that their families are supported in their bereavement. The group should be led by the Department of the Taoiseach to ensure a wide perspective and supported by a strong secretariat. It should be cross-departmental and comprise representatives of all Departments, including the Departments of Health; the Environment, Community and Local Government; Social Protection; Justice and Equality; Education and Skills; Finance; and Public Expenditure and Reform. It should invite oral and written submissions from interested parties and facilitate meeting people where they are, namely, in their homes and communities. It should seek the views of people living in the community. It should reflect on the findings and recommendations of the Oireachtas Joint Committee on Health and Children which concentrated on the health aspects of end-of-life care. It is not an Insurmountable task or ask but an essential undertaking.
Dr. Paul D’Alton addressed the Oireachtas committee thus:

Death remains the biggest threat as well as the greatest challenge to humanity. It is the single universal event that affects all of us in more ways than we care to know. There is a growing amount of literature that points to the fact that death is not a discrete event; rather, we die as we live ... In this way dying well does not simply involve the last days or weeks of life; rather, it is the product of attitudes and values that we hold as citizens and governors of the State. These attitudes and values underpin how we prioritise and organise our services, how we interact on a personal level, and fundamentally how our society responds to the issue of death and dying.

The think ahead initiative helps prevent shock, helps avoid confusion ... by encouraging us to think, talk and tell. It takes the attention, the intention and the desire of the way we live and applies them equally and exquisitely to our death and dying, so we have some control, choice, peace, dignity at the end.

David Norris (Independent)
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I congratulate my friend and colleague, Senator Marie-Louise O'Donnell on introducing this topic. While it is not particularly sexy, it is extremely important and affects us all. I cannot, however, congratulate the Government on its utterly feeble and disgraceful amendment.

David Norris (Independent)
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Thank God for that - well done. Government Members are decent people and we can stand united on this motion. It would have been outrageous to have tabled an amendment to it. I thank the Government, as it is a good day for Seanad Éireann and Senator Marie-Louise O'Donnell. This important point has been addressed, but it did not receive much publicity. Last year a former Member of this House and a former Supreme Court Judge, Mrs. Justice Catherine McGuinness, chaired the Forum on End of Life which issued a press statement calling for precisely the kind of thing for which the Senator calls, that the Government prepare a national end-of-life strategy. The statement read:

We believe the time has come for the State to look at all aspects of end of life in Ireland and plan for the future delivery of care and services. The strategy should be wider than health care and reach into other relevant areas of life - economic, legal and administrative affairs. Death is a taboo issue. The State should take the lead in starting a national dialogue on death and bereavement.

The development of evidence-based guidelines for end-of-life decisions in non-malignant terminal illness is overdue. This work will be valuable from patient management and health service planning perspectives as it will identify and characterise the current limitations in care for a large proportion of patients with neurodegenerative diseases. Informing and guiding patients and their families through the difficult decision-making process to a peaceful death should be integral to the medical practice.

A young doctor came in and told his partner that he was dead. That was it. Then in they came and carted him off. She said that nobody there had any training on how to deal with a person who is suddenly bereaved because hospitals "don't do death". I think that they should start to do death.

There is also prejudice and stereotyping against various groups such as Travellers, people who suffer from dementia and gay people who experience what is called disenfranchised grief. Sometimes these people are not allowed to attend funerals or are not recognised as spouses. Occasionally this does happen. I will never forget when Micheál MacLiommóir died and President Ó Dálaigh, at a time when being gay was still criminal, reached across the grave to shake the hand of Micheál's partner, Hilton Edwards, and told him he was sorry for his trouble. What about people who suffer from cystic fibrosis which is a very special disease? We need to examine all of these matters. What about people with learning disabilities? Bereavement is often not just about the confusion of the person. Parents worry what will happen to their child when they pass on.

I shall make two final points. Sometimes terminally-ill children are discharged into the community but there is no place, help or assistance available for them at that point in their lives.

Finally, the State grant for funerals is gone. I would like the Minister to re-examine the matter and provide a cushion and help to people. If that were done it would indicate that we, as a community, care. I congratulate my colleague, Senator O'Donnell, on tabling the motion.

Colm Burke (Fine Gael)
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I formally withdraw the amendment. I welcome the Minister of State to the House. I also welcome this debate and thank the Senators for bringing it forward.

As set out in the motion, on average 29,000 people die every year and for every person who dies ten people, directly or indirectly, are affected which amounts to 290,000 people. The motion covers a number of different issues. It is important that we look at how and where people die which has been referred to by a number of speakers. A survey was conducted a number of years on Irish people and 67% indicated that if they were dying they would prefer to be cared for at home. However, only 25% of people die in their own home, 70% die in care institutions, and 43% of deaths occur in acute hospitals. It is in that context that we need to decide whether it is necessary, for instance, to transfer people from nursing homes to hospitals for the last few days of their lives. We need to examine the issue immediately. Between the fair deal scheme being operated in private nursing homes, community hospitals and care facilities for the elderly, over 27,000 people are cared for. Surely we could start with them and adopt a more progressive approach instead of unnecessarily transferring people to hospitals at this time. We need to look at the matter.

We must also examine palliative care. We focus very much on palliative care for people with cancer. Interestingly, the figures show that 29% of people with cancer in this country take up most of the palliative care support. In fact, 33% of deaths are due to disorders of the circulatory system but we do not take that fact into account when it comes to providing palliative care. It is right that support is given to people with cancer but palliative care should also be provided to people with other health problems.

Let me turn to the Department's document entitled Future Health: A Strategic Framework for Reform of the Health Service 2012-2015 which shows that the HSE is working on a prospective funding model for palliative care. The review will be chaired by Professor Charles Normand who is the professor of health policy and management at Trinity College. The review will include the following: an analysis of international approaches to palliative care funding; a description of the best palliative care model provision; a description of current data collection systems for palliative care activity; a description of the current funding for palliative care and will refer, as I mentioned earlier, to palliative care not being confined to people with cancer; and a definition of the current spend on palliative care.

Let me outline one of the palliative care issues. This year a budgeted spend of €73 million, in the national service plan, has been provided for palliative care but that sum does not include spending on palliative care in acute hospitals. Quite a big budget already exists but is it being used effectively? How can we develop the programme to accommodate all of the needs of the people who are ill?

The motion deals with a number of different areas. It is about adopting a joined-up thinking approach to providing support and care to people who are facing death. All of their medical care is being provided but we must assist their immediate family. As a practising solicitor I have discovered that people do not take into account the best way to deal with their affairs. This motion deals with the legal and taxation aspects of death. Solicitors are asked to visit hospitals at a very late stage in order to look after people's affairs. People simply do not give serious thought to drafting a will. As a result, solicitors are finding more and more that issues arise after the person has died which cause even further conflict. Over the past decade I have dealt with a number of cases where a family who worked very well together before a death changed once the death occurred. Major problems arose that led to major divisions and people ended up not talking to one another at all. In any review on such a matter we need to educate the public generally on the need to plan ahead, especially for taxation purposes.

I welcome this debate. It is a start but we need to continue the debate. All of the professions involved need to adopt a joined-up approach and I refer to the medical, legal and care sectors. However, the debate is very welcome.

Labhrás Ó Murchú (Fianna Fail)
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I compliment Senator O'Donnell on the motion which may be unusual but makes a lot of sense. One wonders why we have not considered such a motion in the past. The fact that it does not show up on the radar as often as we like does not change the fact that we all have a vested interest in the motion. There is not a person here, or a person who will consider the motion, who will not be at the receiving end some day of whatever policies and procedures are progressed.

I also compliment the Government on withdrawing its amendment. I was taken aback when I saw its amendment because I could not see the reason for it. The withdrawal is a good start.

A lot of us just draw on our own memories. How often have we written to a bereaved person to express our sympathy and made the point that we know he or she will be comforted by many happy memories. That sentiment is very much a part of the motion. It is not just about dying or the dead but also the living who remain. That can indicate straight away the multifaceted nature of the policy that is required. There will not be any disagreement about the motion because we all strongly agree with it. I hope that the motion will be treated with a degree of urgency.

I hope we will not just agree on this, because we all support the motion, but also treat it with a degree of urgency. There are ways of means of doing that. The role the Joint Committee on Health and Children has already played is an indication of the opportunities we have to progress this motion very quickly. The motion is comprehensive and well thought out and flags many of the headings to which we have to give consideration. It would be helpful if the Joint Committee on Health and Children, over a number of hearings, invited various interested parties to appear before it, now that Senator Marie-Louise O'Donnell has provided a focus for us and let it play a role.

Everybody here will have visited somebody who was dying, whether at home or in a hospital, and each environment is different, but the public environment is a particularly important one. The smallest thing in a hospital, when visiting someone who is dying, can leave one with a bad or a good feeling or a good memory. It all comes down to staff and their training. In general, my experience is that they are pretty good in this regard. Communications skills are very important in this area.

Another issue concerns the actual place where the person is left. I have seen an elderly person dying in a ward where there were other patients. It was difficult for the patient who was dying, it was difficult for the visitors and it was certainly difficult for the other elderly patients in the ward. Much of this will require a great deal of commitment. Obviously we are talking about physical space and so on to make this possible. There are other issues as well. A very good friend of mine who died in the past three weeks had attended a meeting with me two weeks previously. Due to a double brain tumour, the person lasted only 14 days, which was shocking for everybody involved. It was interesting to note that she sent for her friends to come in and plan her funeral with her. This is becoming quite common and it shows how the culture is changing. We are making decisions on what music we want played. This is important to the relatives and friends as it helps them to grow with the reality that they will lose a relative, a loved one and a friend.

So far as the motion is concerned, any one of us could virtually write a document on this, referring to the points we have noticed over a period. While I was a member of the town council in Cashel, a very distraught lady came to visit me. She explained the reason she was so upset. She said she could not sleep at night thinking of Jack's feet, God be good to him, out under the kerbs. What had happened was that Jack had died and been buried, and subsequently, the council made a decision to lay a path in the cemetery, putting it over his feet. One wonders if that means much to anyone, but to that lady it meant everything. She could not sleep at night. Even though I am smiling, I could understand it for the person involved.

One must also remember there are 3,500 to 7,000 people in Ireland who are suffering from mental problems as a result of bereavement. That is understandable because of the legal issues involved. I have often reflected on this at a wake. We help people to get through the immediate grief and we are very good at that. Those who are bereaved are able to smile and talk. However, when they return to their own homes after all the sympathisers have gone, the reality, which is huge, hits home. There is a trauma involved in that also. We should assist in whatever way we can assist through policies and focusing people on the financial realities. Even cultural and legal issues have to be considered. I compliment Senator Marie-Louise O'Donnell on starting something I believe is very important. The withdrawal of the amendment is much more than it might appear on the face of it. I think we are all beginning to realise that there is an opportunity for us to do the right thing for future generations.

John Gilroy (Labour)
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I welcome the Minister to the House. I assure Senator Marie-Louise O'Donnell that this morning when we saw the amendment proposed by the Government, we were equally concerned and, as Labour Party Senators, made our concerns known to the Minister, who agreed to withdraw the amendment. We were shocked that the amendment would have come before the House in the first place and we are happy to support the motion.

Last year the Joint Committee on Health and Children conducted public consultations in the area of palliative care, end-of-life care and bereavement. The contributions to the committee find good expression in the motion before the House. That is the reason we welcome it. I commend Senator Marie-Louise O'Donnell on tabling the motion. It is part of a political process and it is good practice, if a motion is introduced in one House of the Oireachtas, that we follow it up here later.

Last month I presented a report to the Joint Committee on Health and Children on suicide prevention which I hope we will be able to progress here. The Minister is aware of and is supportive of it and will surely come in to discuss it with us. During the public hearings we heard from a range of expert witnesses, including the Institute of Community Health Nursing. Public health nurses have a key role to play in this area because, in conjunction with general practitioners, they are probably the first ones who come upon the need for palliative care. That is how it should be. There is a huge role for public health nurses, which needs to be expanded. We need to support them in the delivery of care as close as possible to home in the community. The care needs to be structured and holistic, and public health nurses are to the forefront in this area.

Nursing Homes Ireland also made a thoughtful contribution, pointing to the fact that 23,000 people receive residential care in our nursing home services. Some 75% of the care is provided by the private sector, which has a role to play also. I draw attention to several publications in this area and one in particular which was written in conjunction with the Irish Hospice Association, End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland. It is an excellent document which provides a platform on which to build our strategies, and should be used as one pillar of a comprehensive and holistic approach that is needed in this area. Who better to listen to than the experts delivering the services? That points to the comprehensive nature of Senator Marie-Louise O'Donnell's motion and the reason we should support it. The motion is non-controversial and eminently sensible in calling for a comprehensive and strategic view of how we might deliver services. There is no question that the services are very good, but they could be better. A strategic view of services is exactly what is needed. I am aware that the Minister is keen that this is the way it should be.

To speak about the importance of delivering palliative care and end-of-life care as close as possible to the person's home is not to ignore the increasingly complex nature of some of the palliative care interventions required. Unfortunately, their complexity means it will not be possible for some people to receive palliative care treatment in the location of their choice - that is, at home or in a nursing home - as it may require complicated intervention at acute level.

Where it is possible to ensure that palliative treatment is provided in the home, we should do everything possible to support that.

Declan Walsh, a professor of palliative care medicine, made a contribution to the committee also and called for a comprehensive, integrated, palliative medical programme. When professors of palliative care call for this, they are obviously saying we do not have it currently. We need - and the Minister is looking at this - to provide a service that is closely linked with clinical, operational, financial and administrative services.

I had reason in the past couple of weeks to have some contact with accident and emergency services in this country, one in Navan and the second contact with Cork University Hospital, in regard to the admission, on an acute basis, of two very unwell elderly people. The service provided in these accident and emergency services was far from optimum and I was very discouraged by the level of treatment received by both of these people. Whether this was an unfortunate or isolated instance or symptomatic of something worse in our accident and emergency services, it needs further examination.

I abhor hearing the media talk about elderly people as "bed blockers". I have heard the Minister say many times here that what is needed in this country as much as resources and staffing is a change in the culture of how we deliver services. I know he is strong on that and look forward to working closely with him in that area. I have a lot more to say, but do not have the time to say it now .

Jillian van Turnhout (Independent)
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I thank my colleague, Senator O'Donnell, for putting forward this motion for debate and for starting a conversation and discussion on this issue. Senator O'Donnell accompanied me, as a member of the Oireachtas Joint Committee on Health and Children, to the committee hearings and we both participated actively in them. I learned a lot by having her there. In developing this overarching strategy, I suggest the Minister of State needs to look no further than Senator O'Donnell to lead the work in this area.

As Senator O'Donnell said, we die at all times, at all ages and in many different ways. When we talk about end of life, we often forget the word "care". People only hear the words "end of life" and think of finality and the last moment or second. However, this motion suggests for me that end-of-life care refers to those days, months, weeks and years leading to death. Who knows when death will arrive? None of us has a time stamp that tells us exactly when the moment of death will come. Therefore, we are talking about care over that time.

Think of the language we use about death. We start with children by saying things like "Granny went to sleep". It is no surprise then when the child says, "Mammy, I do not want to go to sleep; I am afraid I will not wake up." This is like telling a child whose parent has been imprisoned that the parent has gone off to work, leading the child to have a fear and resentment against work. We need to be careful about the language we use when talking about death, from talking to children all the way through the care system. We often use medical language in a way that does not allow the individuals involved, their families and supporters to use other meaningful language. This does not allow them express their fears and admit they do not know the answers. Often there is no right answer, no pathway or set of steps to follow or to explain what exactly will happen.

Often when we speak about end-of-life care, we are talking about care for older people, but we must be equally cognisant of the work of organisations like the Jack and Jill foundation and the LauraLynn Children's Hospice. I would like to mention in particular the Irish Hospice Foundation and the eight children's outreach nurses it is providing. I thank the foundation for providing these nurses. I am very proud to chair an organisation, Early Childhood Ireland, which has raised funds through its pyjama days for these nurses. I believe that we have raised €1 million over four years for this outreach service.

I want to speak personally on this issue. I know that the story the Minister of State often hears in the Department is the negative story, but I have had a very positive experience and I want to name the Clonskeagh community nursing home in this regard. I believe the word "community" is very important in regard to this issue. During the committee hearings, one of the witnesses spoke about the triangle of care - the staff, the patient and the relative and went on to say that staff in this area need three Cs. They need to be confident, competent and comfortable. I came up with my own three Cs when talking of the individuals concerned, because we often remove these three Cs, consent, choice and control from the individual.

The three Cs for an individual describe what we are talking about here. We are talking about consent, choice and control and when control is removed from the person. My experience in Clonskeagh has been that one can pop in at any time, because it is a home. My dad is at "home" in Clonskeagh. People there go to bed at all different times of the day and night. There is no set bed time. When my dad was in another hospital, I registered him to vote in the children's referendum because I wanted to be sure he got to vote on that issue. He was the only resident in that hospital to vote at that time. However, in Clonskeagh community nursing home, everyone is registered to vote, because it is their home. We often seem to push people into a nursing home and say that is it and confine them to that, but that should not be the case. In Clonskeagh nursing home, they celebrate the good days, have parties and invite singers in to sing. It is the kind of atmosphere we would all want. It is about consent and control. Staff never force anybody to do something or to take part in something. The individual has control over what he or she wants to do.

We heard again and again in committee hearings about staff, which includes cleaning, catering, nursing and care staff. We are not just talking about one group. The idea that only one person talks about death or end of life is wrong. Should we have to wait until that one person is on duty before a family member or individual can ask a question? We all face the cliff edge, but do not know how far it is to get to it. We need to look at how we deal with this.

Senator Burke mentioned accidents and emergencies. I believe there is too much reliance on a medical approach in this regard. We do not need to take the medical approach all the time when dealing with end-of-life care, because this is not always the answer. That is not part of the choice and control for the individual concerned. The person does not need to be in an accident and emergency unit. Instead, people need care and support at that difficult time.

Some particular issues were raised during our committee hearings and I have raised these issues at quarterly meetings with the Minister. These particular issues concern advanced care directives. I believe we wait far too late to take these on board. We learned at our hearings that in Belgium when one buys a house, one also makes a will and makes out an advanced care directive. This is seen as a positive move, not a negative one. We need nurses who can prescribe medication and a provision allowing ambulance services to pronounce death. There is too much use of resuscitation by ambulance staff to ensure they get people to the hospital where they can be pronounced dead. Rather than this, if somebody has died at home, we should allow the ambulance staff pronounce the death in the home.

We need this overarching strategy. I look forward to the report being produced by the Oireachtas Joint Committee on Health and Children. I thank my colleague, Senator O'Donnell, who is a fount of knowledge in this area. Personally and professionally she has been a great resource for me. I believe she would play a strong role in developing the strategy.

Caít Keane (Fine Gael)
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I welcome the motion put forward by Senator O'Donnell and compliment her on moving it. The discourse on older people and care of our elderly citizens is one of the most important discourses we can have, as is the management of our approach to the elderly, death, dying and bereavement, not only within our health services, but in society in general. This motion covers many of these areas and matters, not only for patients in the health system but for the whole system. Senator O'Donnell has encompassed many of the relevant areas in what one might say is a broad motion.

It has to be because people do not change because they are elderly or late in life.

Having a truly strategic approach to care of the elderly, not only those facing end of life, makes political and economic sense because death is something everybody will experience. We all have a vested interest in the subject. Some 27,000 people die in Ireland each year and up to 290,000 are newly bereaved. In anticipating and planning for the needs of the elderly, over-medicalisation is usually what we have to deal with in Ireland. When there was consultation in the Seanad, Nursing Homes Ireland had a good input and spoke about medicalisation. It has many facets, for example, preventing inappropriate emergency admissions, discharge from expensive care settings such as acute hospitals and providing care closer to home in line with the patient's preferences. It is easy to have over-medicalisation and the patient's preference sometimes do not come into it.

In 2011, there were 523,800 people or 11% of the population over the age of 65 years. By 2041, this percentage will have risen to 22%. It is vital, therefore, that we look at this issue in an all-encompassing manner. On my way here this morning I listened to a radio interview with a 98 year old woman who gave classes in knitting. Given the benefits the elderly bring to society and will bring in the future, we do not use them. Everybody has so much to offer, which is another facet at which we should be looking.

I note the contribution made by the voluntary and community sector. When representatives of Nursing Homes Ireland were here, they spoke about nurse training and how nurses over-medicalised in treating the elderly. As we all know, gerontology is distinct from geriatrics, the most universally acknowledged branch of medicine that deals with the diagnosis and treatment of disease, but I took to heart Nursing Homes Ireland's statement that nurses should receive more training in the field of gerontology and what the people wanted. In its submission it stated nurse training was lacking in assessment and care planning. This was through no fault of the nurses but the training provided. Nurses are ill-equipped to assess a person's psycho-social needs and include his or her personal preferences in care planning. Personal preferences are so important as one size does not fit all, be it in what the person wants in making a will, giving power of attorney to someone while he or she still can, all of the financial and legal matters that have to be dealt with and everything else that worries an older person. In that regard, he or she should have the facility to get advice on what he or she should be doing.

The range of issues which impact on bereavement is diverse, ranging from palliative care, counselling, social welfare payments following death to taxation on inheritance, the legal rules around capacity, public awareness and bereavement training. I acknowledge that 8,751 episodes of bereavement support were provided by the Department's bereavement support services in 2013. The Minister of State, Deputy Kathleen Lynch, is doing a lot in the Department to acknowledge the person-centred approach recommended, which is obvious in the various changes made in what she termed "other supports" provided and the linkages in the provision of advice on social protection and support from organisations such as the citizens information centres. I mentioned the voluntary sector, but there is also the Irish Hospice Foundation and the work the Minister of State is doing with it.

John Crown (Independent)
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I do not normally do this, but I will read a brief article which was written a few years ago by Dr. Ken Murray, an American general practitioner. I found it extraordinarily informative and moving. It is one everybody looking at changing policy on end-of-life care should read. He wrote:

It's not a frequent topic of discussion, but doctors die, too. And they don't die like the rest of us. What's unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
Of course, doctors don't want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They've talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen - that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR [cardio pulmonary resuscitation] (that's what happens if CPR is done right).
Almost all medical professionals have seen what we call "futile care" being performed on people. That's when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, "Promise me if you find me like this that you'll kill me." They mean it. Some medical personnel wear medallions stamped "NO CODE" to tell physicians not to perform CPR on them. I have even seen it as a tattoo.
To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they'll vent. "How can anyone do that to their family members?" they'll ask. I suspect it's one reason physicians have higher rates of ... depression than professionals in most other fields.

I will make one practical observation. Not only is it right from a humane and social point of view to do this medically, it also makes sense in terms of health service resources. I am not saying we should economise in caring for the dying but doing it wrong is not only wrong but also more expensive. I am not saying people do not deserve to have these resources provided when their prognosis is that their life expectancy is short; they do not lose their rights when their life expectancy is short, but we are putting them through things that are bad for them.

Kathryn Reilly (Sinn Fein)
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I welcome the opportunity to speak to this important motion and thank Senator Marie-Louise O'Donnell and her colleagues for tabling it.
There is no escaping death and there is little point in trying to do so, at least until some future time when cryogenic technology allows us to freeze ourselves. However, death is traumatic, stressful and costly. Other speakers focused on elderly people, but the subject of end-of-life care issues is not confined to people of a particular age. Having buried a friend, I realise it is not something for which we can ever be prepared. In respect of the educational and cultural aspects of bereavement, I used to laugh at my father and called him a coffin chaser when he listened to the death notices, but when it came to my own experience, I was not ready to organise flowers and put on black clothes to attend a funeral service. Growing up, one experiences one's granny or grandad passing away. It is in our mind that death affects the older generation, but we also need to consider that end-of-life and bereavement can happen at any age. I refer to Donal Walsh and the example he showed in concentrating on the importance of life.
I do not know if other Senators have read the book, Tuesdays with Morrie, by Mitch Albom which contains lessons on how to live. I was reminded of that book when I read the motion. Even though the protagonist in the book, Professor Morrie Schwartz, was prepared for death and imparting lessons to the author, Mr. Albom, he was nonetheless fearful as his condition deteriorated towards the end. For someone who was previously independent, losing the ability to dance had a particular impact on him.
Other speakers referred to the legal and financial aspects of bereavement. I have two brothers and always tease my parents about what they will be leaving us in their will. This is an issue which people often neglect. I get on very well with my brothers, but that is not to say if, God forbid, something were to happen to my parents, we could not fall out with each other. People need to be aware of this issue.
The fact that we have an ageing population gives rise to challenges. Combined with high levels of emigration in recent times, there could be profound implications for the way in which the parents of today enter their final days. There is a danger that some of them will be left alone and devoid of the support of their extended family and bedside care provided by sons and daughters.

It is very difficult, if one's loved one is in another country, to deal with his or her loss or illness. I am very happy to support this motion, and I welcome the fact that the amendment has been withdrawn.

The Irish Hospice Foundation published a report last year entitled Access to Specialist Palliative Care Services and Place of Death in Ireland - What the Data Tells Us. It examines the empirical aspects of this shortage of palliative care. One of the findings was that where one lives impacts on how one spends one's final days. There is regional inequity in resource allocation. The report estimates that 2,470 people are denied admission to hospice beds in Ireland each year. While this motion considers aspects apart from the health issues, there is much to be said for the hospice approach to death and dying. Senator van Turnhout mentioned the home approach. I am aware of hospices where people have their own things around them so that they are not alienated and can have comfort in their last months or days. We need support for families in bereavement. As Senator Ó Murchú said, in the initial stages of grief we are very good at helping one another, but weeks and months down the line, when people stop making the tea or calling in, we have to deal with the grief. We need to consider that.

I thank Senator O'Donnell for introducing this motion forward. We need to keep it on the agenda, because death happens and it affects everyone. I welcome the Minister of State's comments.

Mary Ann O'Brien (Independent)
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I welcome the Minister of State to the House and thank Senators O'Donnell and Norris for tabling this motion. I am naturally going to focus on the sad story of end-of-life care for young children because I represent the Jack and Jill Foundation, which was set up in 1997 to provide specialist care to children with life-limiting conditions. It is a nationwide service serving the Twenty-six Counties. We have a very simple model with eleven wonderful specialist paediatric liaison nurses who come to the maternity unit or the home of the family with the sick child. They help source nurses in the area to get to know and liaise with the family, to care for the child, and to help the parents and the other children cope with the situation at home.

Previous speakers have said that 80% of adults want to die at home, but sadly, 76% do not die at home. Parents have the exact same wish for their children. In most cases they want their children to die at home, although in some cases parents do not feel they can cope with that. I am very proud of the wonderful mummy who built the LauraLynn Hospice in South Dublin. There is also the Irish Hospice Foundation. I hope that in the spirit of good governance these three charities will begin to collaborate. They each have different strengths and different ways of working. We could gather our collective knowledge and experiences and develop good strategy and practice. This is an area of increasing learning and continual striving for excellence. Those parents need commitment, love, dignity and control to create the relationship within the family between the baby or the little girl or boy and the other siblings, to make it as happy and special a time as it can possibly be.

The Jack and Jill Foundation does not have a waiting list. Nursing care can be provided within 24 hours. We do not care if it is Saturday night or Sunday morning. We are a small organisation but we stretch all over the country. We create a relationship with the family, staying with it for a year or more after the child or baby dies. We run bereavement counselling once a year. We try to bring together all the parents who have lost children because, while we might think we are experts in counselling them, they counsel each other just by sharing.

We have raised over €50 million, of which the Minister of State has very kindly given us just under €5 million. We need a lot more money. We need to ring-fence money so that people with children who are going to die can have 24-hour nursing care in their homes. We are funding four Jack and Jill liaison nurses to undertake a master's level qualification in children and young people's palliative and complex care at Coventry University. All of the nurses need that education. We have to bring ourselves to the next level.

It may sound strange to bring up medical cards, but we must roll out the red carpet for these children, not red tape. Our nurses spend a lot of time on the phone with the HSE and the public servants fighting on behalf of these children and their parents, trying to get a medical card for someone who is checking a child out of hospital, who might have a month or six months to live. I leave that thought with the Minister of State.

Feargal Quinn (Independent)
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The Minister of State is very welcome and the step she has taken in withdrawing the amendment is also welcome, because it means this debate is welcomed by the Government. I know something of the Think Ahead project, which is part of the Irish Hospice Foundation's forum on end of life in Ireland. It is a fantastic initiative which aims at awareness-raising, planning and promoting public debate on issues related to death, dying and bereavement. It is a difficult subject to raise, but if people do not have an open conversation about it, that can bring many problems for families. I was present at the death of my sister-in-law in Our Lady's Hospice. It was a very pleasantly well-planned departure. Her children were with her. For years we had been afraid to talk about death. That was the only occasion on which I came across the work of the hospice and it was what one could call a happy death.

Prior to the 20th century, in Western culture, being without preparation for even a sudden death was considered a huge tragedy. It is amazing to discover that people have gradually moved away from talking about death, because it became a taboo subject. The simple fact, however, is that many studies have shown that there is a much greater satisfaction for patients' families at the end of life when time is devoted to end-of-life discussion.

At present, conversations about end-of-life wishes happen all too often for the first time at the patient's bedside, prompted by daunting questions such as, "If your father's heart stops, do you want us to start it again?" What if one's children had to answer that question? This is the last question someone wants to take responsibility for, particularly for someone they love. Family members, including one's children, may disagree, decisions can be delayed and regrets over the things that should have been said and done surface.

It is also, obviously, much better for the patient when planning takes place. Patients at the end of life who are unable to communicate and who have not documented their treatment preferences through an advance directive are vulnerable to receiving unwanted treatment. This vulnerability is heightened for patients without family or recorded preferences. To take one example, according to the Irish Hospice Foundation, when end-of-life care preferences were recorded in nursing and medical notes, dementia patients were less likely to be transferred to acute care or have unnecessary invasive procedures.

Mr. Des O'Neill, a consultant in geriatrics and stroke medicine, pointed out that "contrary to popular opinion, the greatest danger at the end of life is not that you will be over-treated, but that you will be under-treated, in a system that has strains of ageism and prejudice against disability, in particular dementia."

Studies of surrogate decision makers such as family or doctors have found that surrogates and patients often do not agree about the use of life-sustaining measures for patients. One medical study from the United States which reported discussions between patients and family care givers about treatment preferences found that in 60% of cases there was not agreement between patient and care giver about life-sustaining measures desired for the patient who is near death. That is a scary thing to consider. Therefore, on a policy level, we should do much more to ensure that younger people also plan for the future. It was interesting to hear the points made. I appreciate the tabling of the motion. It is helpful, as it gets us all thinking about the issue. Senator Marie-Louise O'Donnell has given us the opportunity to think about things we would not necessarily have thought of otherwise. There is a significant chance if something does happen to a person that one might not get the treatment one wants.

I wish also to draw attention to the need for more public awareness about a proper document on end of life. A form devised by Think Ahead allows people to record the location of key legal and financial documents. That might be the wrong thing to think of at this stage but it is very important. I would love to see a situation in which such a form will be as normal as a doctor giving a routine check-up. In terms of financial issues, unfortunately, a lot of people are still not making wills to ensure their affairs will be taken care of according to their wishes. A will is also helpful in avoiding disputes. The fact is that the less family members, especially children, have to deal with financial issues, the more easily they will be able to put their lives back together. We have heard something in that regard in the course of the debate. The grieving process will be less difficult if the family's or the children's financial future is clear and secure.

I am very glad this subject is also opening up the conversation about organ donation. This is a subject that has been close to my heart. I brought legislation before the Seanad some years ago on presumed consent. The more people who record their preference for donating organs, the more lives can be saved. I am concerned that the Bill never became law. It should be enacted. I hope the Government will return to it.

We have an obvious problem in that many people cannot afford adequate end-of-life care, yet they have capital locked up, for example, in their house. The Government must look at ways to allow the elderly to free up more of the capital locked into their homes, thereby better providing for themselves. The UK-based charity the Joseph Rowntree Foundation has piloted a scheme in the United Kingdom with three local authorities in which elderly people can sell a stake in their home which buyers would reclaim after their death to pay for modifications such as a walk-in shower that would help them remain in their homes rather than go into a nursing home. The idea is to free some of the money locked up in the property. Perhaps we could take similar steps in this country. I am aware of several older people who on paper are not badly off because they own their own house, but they want to stay in the house and not sell it. However, they need to free up some cash to survive more comfortably on a day-to-day basis. I would love to see us look at some of the best international practice in this area. There is much potential in this regard when considering end-of-life care.

Perhaps the Minister of State could indicate where we stand in terms of the provision of specialist training in end-of-life care for family doctors. Are there any plans to introduce that?

Kathleen Lynch (Cork North Central, Labour)
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Could Senator Quinn please repeat the question?

Feargal Quinn (Independent)
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Could the Minister of State indicate where we stand in terms of the provision of specialist training for family doctors in end-of-life care? Are there any plans to introduce such training? I congratulate those who tabled the motion and I congratulate the Minister of State on accepting the position and not going ahead with the amendment.

Mary Moran (Labour)
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I too welcome the Minister of State to the House this evening. I pay tribute to Senator Marie-Louise O'Donnell in particular for bringing this extremely important motion to the House. I am also delighted that the amendment has been withdrawn. This is an extremely important motion and something with which we are all in agreement. The motion is too important for dissent. The issue is one that every single Member will have to face.

I welcome Angela Edgehill from the Irish Hospice Foundation and other visitors who are present. I met Angela last year through work with Think Ahead. I have worked closely with her on some areas and got to know a lot about the Think Ahead project and the excellent work it does. I was concerned last year when I read in a briefing document provided by Think Ahead that in 16 counties in Ireland there is no access to hospice beds. Could the Minister of State indicate whether the situation has improved this year? The number of patients denied admission to hospice beds last year was 2,470. Has the situation improved and are we moving in the right direction?

The briefing document provided by Think Ahead is excellent. The proposal is to introduce an initiative to which everyone in the country has access. That is the way to go. I had some brochures in my office last year which I offered to people having raised the subject with them. We are all aware that it is something that can happen. Some of us might be prepared for it but others, as we in this House know only too well, can be struck down and our lives can change in a matter of minutes. It is very important that those who care for us and will be left behind know our wishes and that we make whatever preparation we can. I have discussed the matter with others and I have attended briefing sessions. I never met one person who said the subject was too morbid and they did not want to talk about it. The document provides the key information on what we can do in terms of care and treatment. It also goes into care preferences and how people want to be cared for. Even in our own families some say they want to be cared for in hospital while others want to be taken home. It is important to make known our cultural and religious preferences. Important information is provided on legal and financial provision. It is also important to think about what we want when we die in terms of services and readings. When I discussed it first with Angela I questioned whether people would want to talk about such matters, but it is something that must be discussed. Organ and body donation and post mortem arrangements are also worthy of consideration.

An important subject is where to find important documents. I am probably the world's worst for knowing where policies are. I am great at having them but if someone were to ask me where they are I would not know. Such things could be very important when someone dies if he or she only has a single current account rather than a joint account, as can very often be the case in houses where the main breadwinner passes away and the other person does not know where to access all the documents. I have an example of a form which simply goes through every single aspect and allows one to indicate one's wishes. It is a very sad topic, but I wish to introduce a lighter note. When I brought the document home after I had read through it I said to my children that I was going to fill in the form and that we would look at it together. To this day, it has become one of the biggest laughing points. Every time I do something that annoys the children, they say "That's it - we are going to do this or that."

When I was a music teacher, I often played music at funerals, so I know how important it can be for the family and friends of the deceased. It is important we pick the appropriate hymns and readings to show our respect for the deceased. I do not mean any disrespect but when I raised with my kids what music I would have played at my funeral, one of them suggested at the very end of the mass we would have “Ding-Dong! The Witch is Dead”. While this is a light-hearted touch, it is important that people discuss this subject.

John Whelan (Labour)
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I welcome the opportunity to address this motion tabled by Senator O’Donnell who deserves all credit and thanks for providing us with the chance to have a constructive discourse around this important topic. I am relieved the Government, through the influence of the Minister of State, Deputy Kathleen Lynch, decided to withdraw the amendment to the motion. I do not know how we would have faced into a division over the waking of the dead and comforting the bereaved. There is no more compassionate or kind person in politics than Deputy Kathleen Lynch.

I am surprised, however, it has taken three years for this topic to get to the floor of the House. Politicians of all persuasions have had a strange relationship with funerals and bereavements down the years. Some are noted for never missing a funeral while I have been chided and chastised repeatedly by colleagues for not going to funerals. However, I refuse to go to someone’s funeral if I did not know the person. I will stick with that as it is hard enough to attend the funerals of those I knew.

When I was a young person, I was always bewildered as to why people showed up in large numbers to shake hands with families at funerals. As we grow older and experience bereavement, we realise how important and comforting this is for bereaved families. It should not be taken lightly as it is a well-worn and age-old ritual that should be respected. From a distance it appears a simple process but it is important for families experiencing bereavement, getting them through that difficult time of hardship and loss. It helps them hear other people commenting on their loved one and the relationship they had with them, a point we sometimes overlook.

Coming from a family of seven, I am conscious of the support one has during bereavement with a larger family. These days, family units are smaller with only one or two children in a family. Many people start families later in life and many parents and children do not have the support or the wise counsel of grandparents and extended families. Emigration is another issue affecting families these days. Portlaoise parish provides an Internet video link for funerals that can be seen anywhere in the world for extended family members who cannot make it home. I know of relatives of one family who were able to watch a funeral in Portlaoise parish church in Australia. Who would have thought we would have to resort to this? We have the technology which will help people to cope with a loss, which could be particularly heightened as they have emigrated.

Young people these days struggle to deal with new stresses and burdens imposed on them. If we are going to review the junior certificate, coping skills of all kinds should be embedded in the new curriculum. By the time we give young people bereavement counselling, it can be too late because they might be in the throes of the trauma. This motion calls for advance preparation for bereavement. What would be wrong with introducing coping skills for bereavement into the curriculum?

Other members raised the issue of preparing a will. Every year, there is a day devoted to making people aware of the importance of a will. It is a matter younger people believe does not affect them. Making a will properly, no matter one’s age, reduces stress on families who may have to deal with a bereaved family member leaving no will.

It has been brought to my attention over the past several months that across the midlands, post mortems are not being carried out in cases of sudden deaths during weekends. I have encountered cases of young people, unfortunately, killed in a road accident or through suicide on a Thursday evening or a Friday morning but no post mortem will be conducted until after the weekend. This leaves families without closure. While they need time to mourn, the trauma, anxiety and hurt is unnecessarily prolonged by this harsh cutback in health services. Will an on-call service be made available across several hospitals so a grieving family does not have to wait until Monday for a post mortem to be carried out and the funeral, in turn, deferred to later in the week? Death does not keep office hours. Accordingly, we should have post mortem facilities available in our hospitals at weekends, particularly in cases of sudden death. It is unfair to put this additional burden on the bereaved.

Kathleen Lynch (Cork North Central, Labour)
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I thank Senator O’Donnell for provoking this conversation that we all have inside our heads every day of the week but seldom have out loud. I welcome those in the Visitors Gallery who are connected with the Irish Hospice Foundation and the delivery of palliative care. Many Members will have heard me say before that palliative care is not necessarily immediate end-of-life care.

We all have our stories and they are not always about older people, as Senator Mary Ann O'Brien said, which I understand perfectly. It is not always about the very young either but crosses the whole of life.

I met a man by the name of John Murphy through looking for housing and we became very good friends. He dipped in and out of the palliative care service for ten years as he had difficulties with pain management or surgery. It gave me a different insight into what palliative care was as opposed to what we thought it was, for the last month or week of life. He eventually died on the morning of St. Stephen's Day at Marymount hospice, Cork. My sister-in-law and I had spent Christmas with him. While I am not certain any of us would ever see leaving this world as a pleasant event, in John's case it was very peaceful and dignified. That is very important to every one of us and it is especially important to those who sit and wait that that dignity and respect be maintained. We are not discussing somebody just transitioning but someone whom we loved, understood and with whom we had a relationship leaving this world. It is very important to say it is not just about that short time at the end.

My father-in-law died recently in an acute hospital. He was cared for by a palliative care consultant. While he did not receive the type of intensive attention one would get in a hospice, very clear advice was available and pain and discomfort were alleviated. While we are not making as much progress as we would like, we are making some and training people. Senator Feargal Quinn's question is apt. If we are to have advance care directives and capacity legislation which we will shortly, more people will opt to end their days at home. What part will GPs play in that regard? Because they are the ones who know us best and who have probably treated us all our lives, they are a key and essential element.

I thank each of the contributors. Each person has a different story, which is important. As Senator Marie-Louise O'Donnell said, one size does not fit all because each story is different, with different family and community reactions. I thank Senators for raising the issue.

Bereavement is a part of life which, unfortunately, affects each and every one of us and something to which we can all relate. Few other events in life can leave a person as bruised, confused and, often, angry and few test our personal resources more thoroughly than the pain of losing someone close to us. Where a child is lost or a person is taken through suicide, the pain for those left behind defies description. Any instance where a person's death is sudden or unexpected, for example, in road accidents, as Senator John Whelan said, or through any other accidental cause, will leave families and friends in shock, disorientated and bewildered. We can all relate to this. The bereaved often do not know where to turn. Senator Marie Moloney made a recommendation on undertakers and the type of information they hold because they are the people to whom we go, no matter how we choose to deal with our loved ones. I commend the Senator for drawing attention to these issues by proposing the motion. I will forward her suggestion to the division to see where it can go. The motion correctly highlights the range of issues bereaved people face every day. Not only must they come to terms with intensely personal grief and loss and the immediate practicalities of funeral arrangements, but they often face legal issues, financial worries and a plethora of other issues as they try to reconstruct their lives after a death.

Bereavement takes many forms and occurs in an almost infinite variety of circumstances. Levels of interaction with officials and other agencies will vary very widely, as will the nature of these interactions. The mix of supports provided will vary dramatically from setting to setting and from person to person and any given intervention may be entirely unrelated to others. This is to be expected, given the number of people and agencies involved and the range of issues arising. It is critical that all agencies constantly review what they do to support the bereaved and other groups who are vulnerable or find themselves under pressure and constantly strive to improve and strengthen what is provided. This will require co-ordination across measures in some cases and individual responses to be tailored in others.

While palliative care is primarily directed at the person who is dying, it is also perhaps the greatest support we can provide for those close to the dying person, as what they want more than anything else is for their loved one not to suffer. Many people in Ireland have as good a death as it is possible to have. The hospice movement is well developed compared to elsewhere. There is general acceptance of the philosophy of the hospice movement, which is to enable people to live as full a life as possible right to the end, with dying seen as part of a continuum and a process rather than an event at a single point in time. As well as caring for the person who is approaching the end of life, palliative care also provides support for families and this care continues after their loved one has died.

It is the intention of the Government that all dying people will be provided with the type of palliative care services that they need, regardless of what diagnoses they have, how old they are or whether they die in a hospice, an acute hospital or at home. I had a very fruitful meeting with the Irish Hospice Foundation which operates on a 32 county basis. I asked the question about older people in care homes being moved to acute hospitals. I was told there was a new protocol whereby most people in care homes, if possible, were allowed to die in that setting, which they now call home. That is another progressive and welcome step.

The HSE is working with the Irish Hospice Foundation on the hospice friendly hospital programme to ensure the principles of hospice care are incorporated into the care provided in acute hospitals and residential homes. Most palliative care consultants work across acute and hospice settings and also with community home care teams; therefore, there is already much ongoing collaboration to ensure patients and their families receive a seamless service. It is equally important, as Senator Mary Ann O'Brien said, that the three substantial charities operating in this area co-operate. Their learning and experiences are different and sharing expertise within the three will be beneficial. There is very good co-operation and engagement between the HSE and voluntary organisations, for example, with voluntary hospice organisations in Waterford, Kerry, Wicklow, Galway, the midlands, the north east and Mayo-Roscommon, to address the gaps in service provision.

While I do not want to impose a long list of statistics on Members, some performance data from the HSE for 2013 are worth mentioning. They show that almost 95% of patients received a specialist palliative in-patient bed within seven days, while 99.5% received the service within one month. Again, improvements can be made. All HSE areas have community specialist palliative home care teams in operation. On average, 3,234 people accessed these services each month during 2013, a 10% improvement on the figure for 2012. Some 87% of patients received specialist palliative services in their places of residence within seven days, while 99% received the service within one month.

A national policy was published in 2009 to set out a clear strategy for the development of an integrated palliative care service for children and their families, across all care settings, which included the establishment of a national development committee.

The national development committee, the membership of which includes representatives of statutory, voluntary and professional bodies and parents, has established a number of working groups to progress policy recommendations, including the development of a model for hospice at home care. This is being done in partnership with LauraLynn, the Milford Hospice and the HSE and three pilot locations have been identified.
Eight children's outreach nurses are now in place with the assistance of the Irish Hospice Foundation, for which we are very grateful. The nurses work to identify the needs of each child and ensure families are appropriately linked with local services. They are located in Drogheda, Limerick, Waterford, Temple Street and Crumlin in Dublin, Mullingar, Cork and Galway.
In 2010 the Economist Intelligence Unit ranked Ireland as having the fourth best developed palliative care service out of the 40 countries surveyed. The 2001 report of the national advisory committee on palliative care recommended that bereavement support be an essential part of all specialist palliative care programmes and available in all settings where specialist palliative care was offered. In 2013, 8,751 episodes of bereavement support were provided for 2,233 families through adult specialist palliative care services. In addition, 72 families received bereavement support through the children's outreach nurses and Our Lady's Children's Hospital Crumlin during the two months of January and February this year.
The HSE is in the final stages of producing a palliative care comprehensive framework which sets out the core competencies as to the required knowledge, attitudes and skills across ten health care disciplines. One of the areas of care addressed is loss, grief and bereavement. The framework, through its implementation, will ensure the provision of bereavement support is enhanced across all care settings, including in the community, nursing homes, hospitals and specialist palliative care units.
Another palliative care service improvement being undertaken by the HSE is the development of an initiative entitled, Towards Excellence in Palliative Care. It consists of eight quality assessment and Improvement work books which will be used to assess specialist palliative care services against the national standards for safer and better health care.
One of the essential elements relates to maximising quality of life and support in bereavement, including the development of bereavement plans. Other supports and advice are also offered to those who find themselves bereaved. The National Office for Suicide Prevention which is based within the HSE is working to develop formal and structured partnerships between voluntary and community organisations and the statutory sector to support and strengthen community-based suicide prevention, mental health promotion and bereavement support initiatives and to fund a range of very important initiatives in these areas. The office provides funding for Console, a registered charity that provides one-to-one counselling for those bereaved by suicide. Console has centres in Dublin, Cork, Galway, Limerick and Wexford. It also publishes a directory of bereavement support services which range from local support groups, self-help groups, voluntary or community groups and larger organisations with multiple branches.
Reach Out, the national strategy for action on suicide prevention 2005-14, will come to the end of its ten-year term this year. My Department and the HSE are developing a new strategic framework for suicide prevention for the period 2015 to 2018, building on the comprehensive work delivered under the current Reach Out strategy. The aim of the new framework will be to support population health approaches and interventions that will assist in reducing loss of life through suicide, while aiming for improved co-ordination and integration of services and responses in this area. I have recently approved the establishment of a planning oversight group and five advisory groups covering research, policy, practice, engagement and communications and media to drive the process and they have commenced their work. The new framework is expected to be in place by the end of this year.
The Department of Social Protection and the Revenue Commissioners will advise families on where they stand as regards entitlements and whether liabilities arise. The staff of these Departments and other public agencies will be as sympathetic as possible to bereaved persons and try to smooth the way for them as much
as they possibly can. I take on board what Senator Marie Moloney said, that once people have the information in their hands, they can read it at their leisure when they get home.
The Citizens Information Board is an excellent resource, too. It provides general guidance and very useful contact details and linkages to both public and voluntary agencies which can help at this time. In 2013 the board issued a publication entitled, Information for those affected by bereavement. It provides information on dealing with the practical and material matters that arise following a death. The Irish Hospice Foundation has provided a series of short, simple information leaflets aimed at the bereaved and those who support them. A document entitled, Finding your Way, has been published by the PARC road safety group. It is a guide for victims following the death or serious injury of a loved one in a road traffic collision. There are many other bereavement services and support groups throughout the country, both public and private. Information on organisations providing bereavement support is available from the Child and Family Agency.
An issue which, unfortunately, can arise for dying people is that of mental capacity. This is a particularly painful and difficult issue but one which cannot be ignored. Accordingly, the Government made a commitment in the programme for Government to develop a modern statutory framework to support decision-making by adults who had difficulty in making decisions unaided. In this context, I am glad to say we published the Assisted Decision-Making (Capacity) Bill 2013 in July that year which constituted a fundamental reform of the law in this area. The outmoded legislation will be repealed. Wardship will be abolished. The Bill proposes a series of guiding principles designed to safeguard the person's autonomy, where possible, and ensure the person's will and preferences can be at the heart of decisions concerning his or her life. It proposes a series of support options for situations in which decisions have to be taken on behalf of an individual. However, it requires that those taking decisions on behalf of another person are obliged to respect his or her wishes, where known. It constitutes a major step forward in protecting the rights of vulnerable adults, including those reaching the end of their lives. It passed Second Stage in the Dáil in December 2013 and will shortly be considered on Committee Stage.
An advance health care 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 in the event that he or she lacks the capacity to provide consent or refusal for these treatments. On Tuesday, 4 February 2014, the Government approved the publication of the draft general scheme of the advance health care directive provisions for the purposes of public consultation. Following on from the consultation process, the advance health care directive provisions will be incorporated into the Assisted Decision-Making (Capacity) Bill 2013 on Committee Stage, in line with a Government decision made in 2013. It is envisaged that the Bill will be taken on Committee Stage in the coming months.
The work that has been and continues to be done to support people who are bereaved demonstrates the priority the Government attaches to this issue. This will continue to be the case for all public agencies which have a role to play. For my part, I will ensure the issues which fall within my remit will be given the priority they deserve. I will also ensure those who are approaching death and those who are left behind when a loved one departs will always remain our central focus.
I wish to add the following. Even with advance health care directives and knowledge of a person's will and preferences, in my discussions with people who operate at that end of the scale - it was interesting to hear Senator John Crown's contribution - they have told me that it will be very difficult to override the insistence of families at the point when they say, "Hold on a second, she never discussed that with me." That will be very difficult to deal with. As Senator John Crown rightly said, we need an education piece. I hope today's exercise has made a contribution towards educating people in this regard.

Marie Louise O'Donnell (Independent)
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I thank the Minister of State. I also thank my colleague, Senator David Norris, for seconding the motion and Senators Jillian van Turnhout and Mary Ann O'Brien who were part of the Taoiseach's cabal for speaking to the motion. I thank the Government for withdrawing its amendment which I appreciate more than it knows. It was brave, perceptive and good to do.

About one year ago I was doing some work in my capacity as a broadcaster and a writer when I met a man who was facing his last days. He was living in a very tough and treeless estate located somewhere outside Mullingar. He ached for breath as I sat beside him in the privacy of his own home. When he turned to me and said "You cannot get off this planet alive, Marie-Louise," I knew that death, dying, end-of-life issues and bereavement had a lot more to do with things other than health. That was at the core of what I tried to say earlier.

The motion is not about health. While it of course comes from the genius of the eclectic and electrifying people who gave of their expertise to the Joint Committee on Health and Children - which of course would be the platform for this proposed review - out of that come issues on finance, legality and all the matters I included in the motion, including the educational, cultural and legal aspects of our living lives. This is because the living have to do with the dead and dying and the dead have an awful lot to do with the living. Moreover, it is never someone else's business. One cannot present it to the palliative care or health providers and tell them it is their business. It is the business of people in all walks of life, including Senator Crown's remarks on the education of doctors, the education of young people and in respect of culture, finance, law and all parts of society.

I ask that the State learn from the brilliant initiatives that it created itself, as well as those created nationwide in the various different community-led solutions. I ask that the full panoply of State services be examined and that the Government begins to bring them together, both what is done brilliantly and what is not, to weave them all from a thread to good practice and support into our common humanity. I ask the Government to set up a facility whereby this can be done. While Members need be part of it, I believe there is a place in which this can be done and in which all these strands may be brought together. This should be done in order that people in Ireland can, as the Taoiseach stated, learn to live well, that is, to be born well, to live well and to grow old but also to die well, as they have lived.

I wish to comment on a most interesting remark on bereavement made by a member of the public at the national conference organised in October 2013 by the Forum on End of Life. She explained that because her husband had died well, she and her children could live well and grieve well. What happens before death can dictate what happens after death. I wish to expand this issue beyond the confines of health to all of our living lives. This was the point of the motion and I thank my colleagues for their support. I thank all Members of the House for their support because a motion such as this comes from a good place. It does not come from a political place but is above politics. Members brought a great deal of their own experience, as well as much agreement, to what I was trying to suggest to the Government. I hope Deputy Kathleen Lynch, who I consider to be a fine, articulate, compassionate and perceptive Minister of State, might bring to the Cabinet the idea of bringing this together and might examine its possibility in the future.