Jerry Buttimer (Cork South Central, Fine Gael)
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The meeting is divided into two parts. I ask members to be concise in their contributions as this will assist in the running of the meetings. This is the first meeting in a series which will investigate the arrangements for end-of-life care in Ireland and what measures can be taken to ensure that persons of all ages who are approaching the end of life are enabled to die well and with dignity. End-of-life issues will affect every human being. They encompass the areas of both physical and mental health. Death is a fact of life. Some 29,000 people died in Ireland last year and up 290,000 people were bereaved and are coming to terms with loss.

It is appropriate that the committee turn its attention to the current system of care for those who are dying and how the health services are organised to deal with end-of-life care. I thank the committee members for their involvement in the preparation for these hearings. I thank Senator Marie-Louise O'Donnell for her assistance and Senator John Crown for his expertise.

This country has a long tradition of dealing sympathetically and respectfully with the end of life and bereavement. It is important that those approaching the end of life, as well as their families and friends, are treated with dignity and respect and given proper care and support. A significant part of the health budget is also invested in caring for our dying patients. We need to examine how a high-quality health service can be provided by making proper use of resources. We will all have an end-of-life experience - hopefully, not for a long time to come, although this is not in our hands to decide. It is good policy for the committee to review and plan for the future. I hope this series of meetings will help in the examination of the key issues and lead to the development of a basis for a framework for future planning and further action. Over the course of these hearings we will hear from experts who are delivering end-of-life care in all care settings, be that in hospices, in the community or in nursing homes. We thank those who are attending the committee meetings voluntarily and willingly in order to give us their insights and expertise.

I ask all contributors to be conscious of time, as there are two sessions today. We plan to hold six sessions over the next five meetings. The committee will publish a report which it is hoped will lead to further action.

I welcome Ms Sharon Foley, Ms Patricia Rickard-Clarke, Professor Eamon O'Shea and Dr. Joan McCarthy. I advise the witnesses that, by virtue of section 17(2)(l) of the Defamation Act 2009, they are protected by absolute privilege in respect of their evidence to this committee. If they are directed by the committee to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given. They are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or persons or entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing ruling of the Chair to the effect that they should not comment on, criticise or make charges against a person outside the Houses or any official by name or in such a way as to make him or her identifiable.

I invite Ms Sharon Foley, chief executive officer of the Irish Hospice Foundation, to make her opening remarks.

Ms Sharon Foley:

I take this opportunity to commend the committee's Chairman and members on their decision to hold a series of hearings into end-of-life care. They are doing the people of Ireland a great service and I welcome the initiative. Reviewing the care of the most vulnerable members of our society is both worthwhile and essential. Every year, 29,000 people die in Ireland, and it is estimated that 290,000 people are left bereaved. It is obvious that death matters in Ireland. While €72 million is budgeted for specialist palliative care, international research suggests that up to €1.3 billion of the national health budget is being expended on end-of-life care. However, this spending is largely unplanned and uncoordinated. No one wins, neither the patient nor the State.

The elements of a good death are truly personal to each and every one of us. There are many elements, personal, communal and societal, which contribute to whether a person has a good death. We cannot promise to be able to influence each of these factors but we do believe that much more can be done by health and social services to ensure better end-of-life care, everywhere. We believe it is possible to secure high-quality care for those facing death which will also ensure the best use of resources. We believe it is the right of every person to die in comfort and dignity, but we believe this must be planned for. The key recommendation of the Irish Hospice Foundation is that we need a national end-of-life and bereavement strategy to plan for the inevitable and to ensure there is no absence of care and no ignorance of need and that end-of-life care is as good as possible.

A national strategy is needed to help us to plan, develop and co-ordinate end-of-life care in hospices, hospitals, homes and communities, as well as addressing the wider economic, legal and administrative issues. This must be a strategy for the entire population, from those who need GP support up to all those who need specialist palliative care to manage their pain and other complex symptoms. This strategy needs to be relevant and supportive of all health care and social care staff who are required to deliver health and social care. The strategy must be relevant to all patients, young and old, to patients all over Ireland and to patients with all conditions, including dementia.

I have three further specific recommendations. We need to develop hospice care. We have plenty of strong national policies around specialist palliative care but we fall down when it comes to putting policy into practice. The result is that some citizens have more access to more services and a choice of care while as many as 2,500 people cannot access an inpatient hospice bed because these do not exist in the regions in which they live. The current number of hospice beds is 155. According to HSE plans this number should be 450. The budget for the national specialist service in 2013 was €72 million - about one third of the cost of running one Dublin hospital for a year. This budget has been cut repeatedly over the past few years. Three regions in the country have no inpatient hospice unit - the north east, the midlands and the south east - as well as the counties of Kerry, Wicklow, Mayo and Roscommon. This inequality between regions and counties is unacceptable. Some people are able to access a full range of services while others with the same needs are denied this access.

The lack of a full range of hospice services has an impact for patients and the health system. Hospital care is expensive. Our research into deaths from cancer shows that fewer sufferers die in hospital if they live in a region which has a hospice, from 52% of deaths in hospital in the north east to 21% in the mid-west. The support of a hospice home care team will mean that a patient is nearly twice as likely to be able to die at home.

Practical ways to support the provision of specialist palliative care are urgently needed. A national end-of-life and bereavement strategy would help us to plan all services, including specialist hospice care. In addition, there must be improved support for acute hospitals to deliver better end-of-life care. Most of us wish to die at home, but 43% of us will die in an acute hospital. A hospital audit we conducted shows that more than 80% of people who died in hospital were admitted via the emergency department, and had the same long wait as everybody else. That is not what people want for themselves or their loved ones. The audit also estimated that up to one quarter of patients could have died at home if the appropriate community supports had been in place.

A great deal remains to be done. Our hospitals aim to cure, but they must acknowledge and plan for their role in providing end-of-life care. The reality is that people die every day in hospitals. That is not a failure on the part of those facilities; it is a fact of life. We need to support hospitals in delivering the very best end-of-life care which ensures dignity and comfort for the dying patient. There are already examples of excellent practice throughout the country, which should become everyday practice across the board. For example, our hospice-friendly hospitals programme has developed a range of recognised quality standards, staff training programmes and practical resources. If a charity can do that much, one can only imagine what might be done if services are properly planned and funded. There is scope for substantial innovation and enhancement within the estimated €1.3 billion that is allocated to end-of-life care. I urge members to strive for more and work to do better.

Death in hospitals should be considered as part of the national strategy for end-of-life care. While we await that strategy, we have a fantastic opportunity arising from the formation of the new hospital groupings. These groupings should be directed to develop and deliver comprehensive plans for how they will cope with the people who die in their facilities and how they will care for the bereaved. At the same time, we need to help more people to fulfil their wish to die at home. Two thirds of those asked express a preference to die at home, but only 26% actually achieve that preference. While people sometimes change their minds, it is clear that we can do more to help greater numbers to fulfil their wish to die at home. A great deal of good work is already being done through our primary palliative care programme, our nursing for night care services and our funding of children's outreach nurses who support families caring for children at home. However, active planning is needed to develop comprehensive home and community supports which, at the same time, will save resources in the acute hospital setting. Again, we come back to how a national strategy can help us to develop community supports to help people to die at home.

If members take away only one point from today's meeting, I hope it is an awareness of the need for a national end-of-life and bereavement strategy which helps us to plan ahead and ensure people can die well, wherever they are. It is worth remembering that we all have only one chance to get it right in terms of our end of life. I thank the Chairman and members.

Jerry Buttimer (Cork South Central, Fine Gael)
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Thank you, Ms Foley. I now invite Ms Patricia Rickard-Clarke who is representing the national council of the Forum on End of Life in Ireland.

Ms Patricia Rickard-Clarke:

I thank the Chairman and members of the committee for inviting me to speak on behalf of the Forum on End of Life in Ireland. The forum represents the voice of people in Ireland on end-of-life issues surrounding dying, death and bereavement. It is an initiative of the Irish Hospice Foundation and was launched in 2009 by the then President, Mary McAleese, and is chaired by Mrs. Justice Catherine McGuinness. I propose to highlight several areas in which the forum is working in order to enable people to die well in Ireland.

One of the forum's key objectives, as contained in its work plan for 2013 to 2015, which was submitted to the committee, is to advocate for a national end-of-life strategy. Issues arising at end of life are wider than simply health care. Any of us who has had a loved one die knows only too well that there is a myriad of financial, legal, social, cultural and administrative issues related to a person's wishes other than those related directly to health care. For this reason, we need a comprehensive interdepartmental strategy which can address all areas of end of life and ensure the issue is effectively addressed by Government policy.

In short, we must recognise end of life as a natural part of the lifecyle. Government policy addresses the needs of the newborn, of school-going children and of people up to and post retirement age. So too should it address the needs of those at end of life. The forum's work plan addressed some of the issues that should be addressed by an end-of-life strategy, including, for instance, regulation of the funeral industry – one of this country's least regulated industries – and the importance of end-of-life proofing of buildings to enable more people to die well in their own homes and communities.

Another of the forum's objectives is to change policies and practices where this is required. Our systems must be flexible enough to take on board the needs of those at end of life and to change accordingly. Later today I will attend the forum's conference in Dublin Castle - an event that takes place every two years - where 300 members of the public and health professionals who are interested in doing things differently will discuss how we can make Ireland a good place to die. One example of a procedure that needs to be adapted is the forum’s recommendation that authority be extended to trained nurses and paramedics to pronounce death. This was raised during the public consultation the forum undertook in 2009 to 2010 as something that needed to happen, both from the perspective of bereaved families and in terms of making effective use of personnel in hospitals and emergency situations.

Advance care planning is another important issue. How many members of this committee have made an up-to-date will that reflects their current circumstances and wishes? If they are anything like the rest of the population, most of them will not have done so. How many members have thought about where they would like to be cared for at the end of their lives? Have they considered whether they would prefer to die at home and whether they would prefer cremation over burial, or vice versa? Have they told anyone close to them about these wishes or kept them to themselves? Many of us have made such decisions but without communicating them to another person. Talking about death in Ireland is the final taboo we have to face. People in many other countries make advance directives as a matter of course throughout their lifetime. We need to catch up in this regard.

The Think Ahead project - a major element of the forum's end-of-life work programme - is a public awareness initiative and broad advance planning tool designed to guide members of the public in discussing and recording their preference regarding end of life. It is important that we articulate what we want in preparation for a day where we may not be able to speak for ourselves. Not only is it our right to speak for ourselves; it is also our responsibility to spare our loved ones the burden of having to make decisions on our behalf, not knowing whether they are doing the right thing. The forum is initiating a culture change through Think Ahead which encourages people to think, talk and tell: think about what they would like; talk to their doctor or someone they trust; and tell someone close to them of their wishes in order to ensure they are carried out.

While advance directives are recognised in Irish law and are legally binding, there has as yet been no legislative framework to give clarity to the public and health care professionals. That is set to change. The Minister for Justice and Equality, Deputy Alan Shatter, stated in July 2013 that provision for advance directives will be included on Committee Stage of the Assisted Decision-Making (Capacity) Bill 2013. We hope this will help to ensure that people know their rights and can express their preferences.

Think Ahead was launched by An Taoiseach in 2011 and is currently being rolled out nationwide with the help of community groups and key players, including health professionals, solicitors, accountants and local politicians. The initiative is part of the move in Ireland towards meeting our international obligations under the Hague Convention on the International Protection of Adults of 2000, the 2006 United Nations Convention on the Rights of Persons with Disabilities, and the Council of Europe recommendation in 2009 regarding powers of attorney and advanced care directives. These international obligations require us to have systems in place to take account of individuals' will and preferences and ensure their respect and dignity are maintained in carrying out their wishes at the end of life.

We have an opportunity here to make real changes that will enable people to die well in Ireland. We must take that opportunity. I thank members for their time.

Jerry Buttimer (Cork South Central, Fine Gael)
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Thank you Ms Rickard-Clarke. I now call on Professor Eamon O'Shea from the Irish Centre for Social Gerontology at NUI Galway.

Professor Eamon O'Shea:

My background is primarily in aging and dementia studies. I possess a particular knowledge of end-of-life care, having doing some work in this area during the past five years or so.

Irish people are living longer and this means that more of them are going to reach the stage at which end-of-life care will be necessary. One of the important aspects of the work I do relates to transitioning to death. Many people die outside the home, but transition to end of life is a really interesting concept in long-stay care in particular. People transition into older age; they then transition into some level of dependency, then into perhaps residential care and then into the end-of-life stage. It must be recognised that they undergo a series of transitions and that everything does not happen all at once. We sometimes think of death as coming suddenly, but it often does not do so. To reinforce what previous speakers stated, we must be aware of the need to integrate care structures in order to ensure that the various services work together. I refer in particular to gerontology and palliative care services, which are critical.

The other generic context is that of information flows between living and dying. I spend a great deal of time in nursing homes and residential homes. These are places of living but they are also places of dying. What one notices immediately in these homes is the need to create a culture of understanding of death and of support for those who will be left behind. Information flows between care staff and people who are dying and those who remain living are critical. These are the critical interfaces we sometimes forget when considering palliative care services.

The third generic concept relates to quality-of-life issues. These are serious issues and one of the critical dimensions of the human rights of people who are dying is that they must continue to live until they actually pass away. The sort of personhood associated with dying must be to the forefront in the context of how we care for those who are dying. In this regard and in the context of the work I do in the area of dementia, it must be to the fore when it comes to those who are cognitively impaired. There is a need to support those who cannot communicate in ways which would be considered normal but who can still communicate in some fashion. These are critical aspects which we need to discuss.

Another major issue relates to "mediating differences", as I term it, and communication. Ms Rickard-Clarke referred to communication and advanced directives. There is a need to take on board how we communicate decisions at various times in our lives. For example, decisions we take now might resonate in ten, 20 or 30 years' time. There is a need to be aware of this factor and the progress being made towards introducing legislation in this regard is really welcome.

On the locus of decision-making among individuals, health professionals and families, we have all been at the interface at which we feel we want to give and receive information. However, we do not always get the information we require. Information is critical, as is the discourse relating to life and death. It is difficult for people to discuss death, but this is so necessary if the quality of life and standard of care that are essential are to be achieved.

Issues relating to communication and language barriers and to different cultural ways of dying are arising with increasing frequency. Some of the staff at residential care homes come from different cultures and they may have a different interpretation and understanding of death and dying. Increasing numbers of people from other cultures will be dying in our hospitals and residential care homes and we need to consider the differences to which I refer if we are to meet the requirements of such individuals.

The final aspect of mediating differences relates to education and training. It is critically important that generic staff should be trained to understand end-of-life care issues. This matter cannot be viewed as being one with which palliative care services will deal. All care staff in hospitals and residential care will be obliged to deal with death and dying and they need to be trained to do so.

On facilities and services, we need to think more about the infrastructure of dying - that is, the places in which people die and the privacy, dignity and respect associated with death. It is not always possible to do so but we need to make much better efforts to get the infrastructure right in terms of our approach to dying. The position is similar with regard to the bereavement services required after death. When someone in a residential care home dies, everyone notices. We need to discuss this matter and put in place services for those who are left behind in such homes when a valued member of the community dies. So often, this matter is just passed over.

I wish to make a quick comment on dementia and the need to make cognitive impairment an issue. There is some international evidence to the effect that people with dementia are often subject to unnecessary investigations, receive less pain relief and are the subject of over-prescribing. There is a need to be careful when it comes to those with dementia who are nearing death.

Following a number of years of research, I am of the view that there is a need for greater consultation with individuals for many years before death, as death approaches, when they are transitioning into long-stay care, and right up to the time of death. We need to talk to people but we also need to learn how to talk to them. Dialogue is extremely important. The second element is that we must improve both the physical infrastructure and bereavement services. The third element relates to enhanced education and training for staff, which is really critical. The fourth element relates to the need to make end of life and bereavement major public policy issues. I would encourage movement in that direction.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Professor O'Shea and welcome Dr. Joan McCarthy from the school of nursing and midwifery at UCC.

Dr. Joan McCarthy:

I thank the Chairman and members for inviting me to attend these important hearings. My background is in ethics, in teaching ethics and in researching ethical topics with health professionals in Cork, Ireland and abroad. I will focus on ethical problems and suggest solutions in respect of some of the core issues and ethical challenges I see arising for people involved in end-of-life care.

When it comes to death and dying, patients, health professionals and families must make decisions in tense, fraught, emotionally demanding and constrained circumstances. In this context, recent research indicates that the general public has little understanding of the basic terminology relating to end-of-life care. People are confused with regard to the processes relating to such care and uncertain about the role of families in the context of information-sharing with patients or in respect of making decisions for patients. In addition, health professionals are uncertain with regard to patient autonomy rights and can feel pressurised by family members into denying patients relevant information or carrying out treatments they consider futile.

An understanding of the ethical challenges at the end of life is central to good end-of-life care because lack of knowledge, uncertainty about ethical obligations and responsibilities, lack of confidence in expressing nagging doubts and concern with regard to litigation and professional accountability can and do lead to oversight, error and poor practice. As previous speakers indicated, Irish legislative and regulatory bodies are driving reform in this area. This is long overdue and welcome, but if the kinds of reform envisaged in the national consent policy or the Assisted Decision-Making (Capacity) Bill are to be fully realised, then there must be a cultural shift in health care organisations and in practices. Such a shift must also take place among members of the general public. Ultimately, it makes good clinical, social and economic sense to develop educational strategies and support to ensure that clinical practice is ethically and legally sound.

We might live in an age of instant solutions but ethical problems in end-of-life care are not easy to resolve because they involve value-laden opinions, strong personal beliefs and emotional responses. As Professor O'Shea observed, the increasing diversity of the Irish population means that different cultural values must be respected and different religious perspectives understood. There is also a need for greater sensitivity, deeper understanding and more inclusive policies and practices. Increasingly, ethics is everybody's business. We cannot just leave ethics to the ethical experts; nor can we assume that clinical expertise implies ethical expertise. Moreover, recent legal challenges in respect of assisted suicide and euthanasia might have captured the public imagination but clarity and understanding are also required in order to engage with or understand more usual but also very complex and contested decisions and interventions such as those which relate to starting, stopping and de-escalating treatment, sedation, pain management and the provision of nutrition and hydration.

It follows from that kind of complexity and the dense textured challenges that are presented in end-of-life decision making that educational strategies, policies and research need to be put in place. One set of educational resources that has already contributed to demystifying ethical issues that arise in regard to end-of-life care is the document, Ethical Framework for End-of-Life Care. It is the outcome of a unique collaboration between my team in University College Cork, UCC, the Royal College of Surgeons in Ireland, RCSI, and the Irish Hospice Foundation. It is a set of resources for health and allied professionals and the general public. It considers ethically challenging situations in end-of-life care in the context of ethical values, professional codes and laws.

In this presentation, I suggest two important simple, practical and economic initiatives that will consolidate and extend the work and the impact of the ethical framework. The first initiative is a national network of clinical ethics committees. Introducing clinical ethics committees into model one to four hospitals and other health care providers in the community would bring us in line with international practice. In Canada, Australia and the United States they have such multidisciplinary committees, which perform a threefold function: To provide ethics education for health professionals, staff, patients and families; formulation and review of health care policies in the light of ethical considerations and; consultative support to staff with complex and difficult clinical cases. Some committees already exist, for example, in Beaumont Hospital and the Bon Secours organisation in this country but I suggest that they are introduced across the board and that there is a regional and national network among the clinical ethics committees. In light of budgetary constraints, the cost would be minimal and largely administrative at local level but there is a need for some support at national level to co-ordinate the network and ensure there is translation among various committees around best practice.

My second suggestion is a national end-of-life health care ethics observatory. That would be a joint initiative of institutes and universities in partnership with hospital education centres and professional bodies in Ireland. Building on the collaboration between UCC and RCSI the observatory would include tasks, such as providing educational support to the general public; to improve the training and continuous professional development of clinicians and health care staff; to develop and update the ethical framework to ensure that it is current and fit for purpose; and to initiate fourth level educational programmes, PhDs and clinical doctorates in clinical ethics and bioethics to support ongoing work. Research would be included in that area. Again, with an eye to budgetary constraints, the observatory could start as a virtual observatory. What is important is that it is national not where it is sited. It could be supported initially by a network of key people and eventually should find accommodation in the longer term in a large hospital.
Finally, when the Liverpool Care Pathway was found wanting in the UK, the reviewers called on the British Government to ensure that "guidance on care for the dying is properly understood and acted upon, and tick-box exercises are confined to the waste paper basket for ever".Drawing on the experience of others, we can see end of life and dying as a complex art. Care of the dying is a complex art that demands a range of many skills, including ethical skills and competencies so that sight is not lost of the fundamental bond between professional and patient. Where ethics support is part of a standard practice of health care organisations, the international evidence indicates that health care staff are more ethically literate leading to improved patient and family outcomes and less moral stress, desensitisation and burnout for health professionals who are struggling at the coalface due to current budgetary constraints. The two initiatives I suggest, namely, the national clinical ethics committee network and the observatory would work together to ensure the development of that kind of ethical literacy. It presents an opportunity for Ireland to take a leadership role internationally in the development of ethically and legally sound clinical practices in end-of-life care.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Dr. McCarthy and all the witnesses for their excellent testimony this morning. I apologise on behalf of Deputy Ó Caoláin who had to leave. He is dealing with a Bill later and he had to leave to prepare for it.

Marc MacSharry (Fianna Fail)
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I thank the panel for their presentations and their ongoing work. I have two brief questions only because the presentations were very good in terms of recommendations for us to consider. It was said that the potential expenditure each year could be €1.3 billion. Could the witnesses elaborate a little more in that regard? They said it is not in the interests of patients, the health service or anyone. Are we wasting money, doing the wrong things with it or is it purely an issue of general management following on from a strategy? I would welcome more information in that regard.

There was brief reference to the right to die and euthanasia as a policy. Could I get a general view from witnesses on the matter? I do not advocate euthanasia but I am interested in the views of witnesses on the issue because there have been some high profile cases in recent years in the courts and the committee could benefit from hearing the views of professionals in the end-of-life area.

Sandra McLellan (Cork East, Sinn Fein)
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I welcome the witnesses to the meeting this morning and thank them for their presentations. I echo the Chairman’s apology on behalf of Deputy Ó Caoláin who could not attend this morning. I have a few points to make and questions to pose.

With regard to the Irish Hospice Foundation, I am aware that Marymount Hospice in Cork is very well regarded and is the subject of many fund-raising activities. The work of the hospice staff is truly heroic. The point on staffing and resources is well made. Has the Government or HSE indicated at any stage whether additional funding will be made available? Are witnesses aware of whether there are commitments on additional beds?

I have a query on what was said by Ms Patricia Rickard-Clarke on the need for end-of-life proofing of homes. It is an interesting proposal. What would it involve and are there any countries to which we should look as an example in that regard?

Professor O’Shea highlighted the fact that there is a substantial challenge in terms of qualifications and training. He made the point that there are significant gaps in qualifications and education. What courses are available and do additional courses need to be provided or can the shortfall be met by other means?

Dr. McCarthy made some interesting proposals on clinical ethics committees. A point was made in a later presentation about a stand-alone entity. What is her view on such a proposal and could it deal with the need for a change in culture, which she flagged? Would it aid clinical ethics committees and what form should such an entity take?

Jillian van Turnhout (Independent)
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I am approaching the hearings as a learning exercise in the hope that when we bring together the report that we will be able to add our voice and put together recommendations. I am in no way an expert on the issue. A wealth of experience is evident in this first session.

My question relates to the call for a national strategy. Many of the points could be integrated in a strategy. How realistic is the call at the moment? Wearing my other hat on children’s issues, we are close to finalising a strategy. How close is the strategy in this area? I wonder how much we should pin on the strategy as we wait for it.

We have to get down to dealing immediately with some of the component parts of the issues the witnesses have raised with us. The issues I am considering include community care, the timeliness of such care, the care of people in their own homes - the statistics have been given in this regard - and how such care complements the medical health care system. I deliberately use the word "complement" rather than "compete". I am interested to know about the strategy in that regard.

Jerry Buttimer (Cork South Central, Fine Gael)
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I will come to the other members shortly but I want to go back to the panel of witnesses.

Ms Sharon Foley:

Some of those questions may have been addressed to me. To answer Senator MacSharry's question, the figure of €1.3 billion is an international estimate based on an assumption that approximately 10% of the national health care budget is spent on end-of-life care. That is being delivered not only by those providing specialist palliative care, which is for those with special and complex needs, but also by the public health nurse, the general practitioner or the general nurse working on the ward. We do not know where all of that funding is spent but we get a sense that much more thought and planning could be put into end-of-life care in all health care settings to ensure we can deliver better end-of-life care. That is from where we take our evidence.

With regard to euthanasia, we in the Irish Hospice Foundation operate to hospice principles, which is neither to hasten nor to postpone death. There is no doubt that there could be a debate on euthanasia but we would believe so much more needs to be done to deliver good palliative care services throughout the country. That is our position. We must get that right first before we move on to the next debate, and there is a good deal that needs to be done in that regard. I held up a national strategy to members. That was done in 2001. In 2009 a national implementation plan was developed by the Health Service Executive which identified its priorities. In a way that answers Senator van Turnhout's question as well. There are many commitments in place but we must see those move into action. Some updating and refreshing may need to be done in light of new findings, but we must move that into action.

On the Government commitment, there was some commitment in the 2013 service plan to open the beds in Marymount that were developed as part of the new build in Marymount and also to move towards planning in Waterford and Kerry, but we still do not have an opening date for that. These issues need to move from the pre-planning and discussion stage to actual plans and development. It must be remembered also that each of those developments is hugely supported by volunteers who are out fundraising day after day to support them. Their patience will run out at some point if they are not seeing commitments made. Already, 44 beds that were built remain unopened, approximately 20 of them in the hospice in Blanchardstown. It is simply not good enough to have these facilities developed, supported by the volunteers in line with national policy, and then not delivered upon. Have I answered all my questions?

Jerry Buttimer (Cork South Central, Fine Gael)
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Yes.

Ms Patricia Rickard-Clarke:

On the issue of euthanasia, Senator MacSharry might know that the Law Reform Commission produced a report in 2009 on the question of the recommendation of legislation for advanced care directives. That was following an issue that had arisen in the public arena about the need to have this legislation. The commission was not looking at that stage at the law on homicide, which includes assisted suicide and euthanasia as criminal offences. It was saying that it had not even got off the blocks in terms of considering people's wishes at the end of life. We need that conversation, and we need the legislation on advance care planning. In the research the commission did it was very clear that if we had a good legal framework in terms of planning for the end of life, the debate would move away from assisted suicide and euthanasia to a later stage, but we have not even started that.

I mentioned the various international obligations. In 2009 the Council of Europe recommended that member states must have facilities in place to allow people the right to self-determination and autonomy, the right to enduring power of attorney and the right to have an advance care directive. We badly need legislation to comply with our international obligations in that regard.

On end-of-life-proofing of buildings, the forum is talking about cases in which people die at home. It is about the adaptation of a room or, in terms of local authorities' development plans, the need to consider having wider doors in particular rooms in buildings or in communities. Many people now are choosing not to be buried in the traditional manner and we must take account of people from other nationalities, etc., living in Ireland. In the community and in the public arena we need buildings and facilities for people if they choose to be buried there. There is also the question of crematoriums and so on, because more people are opting now to be cremated, but we do not have proper facilities in terms of public buildings, or even in our own homes, to deal with such issues.

On the national strategy, I come at that issue from a non-health-care perspective. In the Assisted Decision-Making (Capacity) Bill we have the legislation on capacity but we have not yet got the detail of the Bill on advance care directives. That proves that there is not always the interdepartmental coming together that is required. From a legal perspective, we must have a strategy to allow people to assign enduring power of attorney so that when people lack capacity we are not into the courts system. Similarly, in terms of their care, we have the advance care directive.

Regarding wills, we all know that not making wills causes great hardship to people and families. When people are ill and dying I am averse to people running in asking them to sign pieces of paper or whatever. If they have not made a will, that is not the time to do that. There must be advance planning in all of those areas. It is vital that all Departments with responsibilities in this area come together to develop an end-of-life strategy. I hope I have answered the questions.

Jerry Buttimer (Cork South Central, Fine Gael)
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How do we compare to Europe or the rest of the world in that regard?

Ms Patricia Rickard-Clarke:

Badly.

Jerry Buttimer (Cork South Central, Fine Gael)
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Is it a cultural thing or-----

Ms Patricia Rickard-Clarke:

It is. That is why we hear of the taboo with regard to talking about and planning for death. In Canada, for example, when people get married, take out a mortgage and buy a house, they make their wills to provide for their children. They assign enduring power of attorney and their advance care directives. Those are in place and they continue to update them as their circumstances change; therefore, their wishes are being recorded all the time. Culturally, we are bad at planning for that, but the international research indicates that when planning takes place it is easier for people facing the end of life, and indeed family members.

Another issue is that people might say we do not have court cases on many of these issues. We do not because people who lack capacity do not have money. We do not have free legal aid for these issues, as we see in other jurisdictions where there is a lot of litigation. We must get that planning in place and have a framework.

Professor Eamon O'Shea:

To take up the question of euthanasia, I have no expertise in that area but I do have expertise in the issue of quality of life and communication about death. That is the first step. That needs to be done first. The emphasis on quality of life and what is a good death requires conversation at a societal level as much as at a staffing level within the services. That is the first stage in this discussion, as my colleagues have stated.

With regard to education and training, there is a paradox, as far as I am concerned, in that dying is an inherently private experience but it is also an incredibly social experience. It is a social experience for care staff and communities and we must think about that in terms of education and training. I am not simply talking about education and training for better care but about attitudes to death. It is about cultural appreciation of death and how to locate death within life - within the living - for the living. That to me is as much part of a holistic approach to death as clinical guidelines or a good policy towards death and dying.

One thing a strategy achieves - this goes back to the first question on expenditure - is to bring together a good deal of information and in that way provide a focus. We know from experience that strategies tend to attract money and that they tend to make us make good decisions on the best approach to the spending of that money. That is one of the good aspects of a strategy.

We definitely must figure out how much we are spending because we need to know that to make good decisions about how to allocate resources. However, there are issues with respect to other strategies. For example, the national dementia strategy is about to be finalised over the next three to six months and within that there must be, for example, some appreciation of dying for people with dementia. In other words, we also must integrate within such sectoral areas issues in respect of death and dying. It is as important to bring such issues into these various places. For example, this is also really important in respect of other chronic diseases.

Dr. Joan McCarthy:

On euthanasia, I agree with my colleagues about the importance of a national conversation on death and dying. It is important to welcome and accept that sincere and reasonable people disagree about euthanasia and assisted suicide. It would be good to welcome any kind of conversation about our fears and worries in this regard and not to be afraid of scaremongering to the effect that every discussion we have about death and dying must be or is about suicide, assisted suicide or euthanasia. It would be good if people were not afraid to say what they believed about it, understood it to be and so on. The kind of courageous journey of a citizen such as Marie Fleming is something that will happen repeatedly because people hold strongly to their wish to be in control of how they die and particularly of when they die when they face highly traumatic illnesses and so on. On the issue of euthanasia and assisted suicide, I also believe it touches on people's underpinning moral values, their religious perspectives and their world views. This of course makes it extremely difficult, profound and emotional. We can honour this and can welcome differences of opinion about it without being obliged to say this commits us to this, that or the other thing. In the meantime, as I stated in my presentation, ordinary and usual things happen in death and dying in respect of breaking bad news, sedation and so on, about which people do not have an understanding. We are just beginning to grasp the importance of recognising and respecting patients' choices regarding ordinary, basic matters, the importance of communicating with patients and so on. Consequently, there are many things we can do but in respect of assisted suicide and euthanasia, one certainly is to not be afraid of embracing the disagreement and the diversity of views pertaining to it - that is, the fact that reasonable and sincere people hold different views on it, the varying levels of evidence extant for the implications of introducing it and so on. The discussion of the issue in the High Court was an example in which reasonable and sincere people discussed evidence in respect of assisted suicide.

I was not sure about the question from Deputy McLellan about the clinical ethics committee being a stand-alone entity. Perhaps I did not express myself clearly, but I am not talking about a stand-alone clinical ethics committee. I am talking about a national network of clinical ethics committees, as well as some support for that national network in the form of a small task force in the HSE, the Department of Health or a large hospital, which would support the translation of ideas among the existing clinical ethics committees. The eighth module of our ethical framework is quite detailed on this issue and was mainly written by Dr. Louise Campbell of NUI Galway, who is a national expert on clinical ethics committees. In addition, Professor David Smith of the Royal College of Surgeons in Ireland has been working closely with clinical ethics committees around the country. Consequently, there is some national expertise in this area and the eighth module of the ethical framework explains what such committees are, how they work internationally and so on, which is helpful for us.

Jerry Buttimer (Cork South Central, Fine Gael)
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As five other speakers have indicated, I will now call on Senators Colm Burke and Crown and then Deputy Catherine Byrne, in that order.

Colm Burke (Fine Gael)
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I thank everyone who made presentations this morning, as they were highly informative. The Marymount hospice has opened in Cork this year and an additional 20 beds are being provided there. I understand the facility is recruiting an additional 36 staff and hopefully they are about to come on-stream, which would be welcome. I am a little concerned about the three areas in the country without hospice facilities or beds and they certainly should not be obliged to wait the 20 years it has taken for the expansion in Cork to take place. This matter must be prioritised. I have a concern regarding the national strategy that pertains to families. On foot of the number of people who have left the country, many people no longer have children who live in Ireland and there must be careful planning for this issue in that present levels of support may well not be in place in ten or 15 years' time. It is an issue that underpins the importance of putting in place a national strategy in this area.

A number of speakers have touched on the legal issues and as someone who has been practising for more that 25 years, I am a little concerned about the lack of extant knowledge about the legal process. Even simple matters arise, such as people who have made wills failing to advise the executors that they have been made. This is amazing. Similarly, trying to get people to create an enduring power of attorney is extremely difficult and I agree with Ms Patricia Rickard-Clarke's point when she spoke about buying a house and getting all those things in place at the same time. It is something that must be done and this is about disseminating information. I seek the witnesses' views on how they would approach getting across such a message. Should it be a joint approach from a number of Departments and Government agencies, or how do they envisage it happening?

Another issue that concerns me greatly is the level of litigation now arising regarding the administration of estates for which wills are made. I have found an increasing level of litigation where wills exist and one reason for this is the tendency of courts to allow costs for such litigation to be drawn from the estate of the deceased. In cases in which people have a fairly frivolous claim against the estate, they will lose their action but their costs still are paid from out of the estate. There is a message from this that must be dealt with because, speaking as someone who is operating in a legal capacity, I find amazing the reluctance of the courts to release moneys for the benefit of the person while at the same time, a great deal of those moneys are being used up in litigation afterwards. Perhaps there should be a discussion paper on how restrictive are the courts with regard to releasing moneys where people require care. This must be tackled and there is a present need to disseminate an information package in this regard. As the relevant information is not out there, what are the witnesses' views as to how this should be approached?

John Crown (Independent)
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I thank our colleagues and, as someone who was recently told he was one of the leading referrers of people to the palliative services in the country, I just wish to state what an outstanding job they do. It has been a real pleasure to see this specialty and discipline growing over the two decades in which I have been back in Ireland. I have a couple of quick points to make and will ask a couple of quick questions. First, I deal with a large number of patients who die and in each week of my career I meet on average two people who definitely will pass away from the illness with which they came to see me, as well as some others who ultimately also will have that outcome, where it might not have been apparent that it was inevitable but where it still has happened. It has dawned on me that there is no real right way to die. It is very different. Some people clearly get phenomenal benefit from the warm embrace of being in a specialised purpose-built hospice, and that is really excellent. Some people - I believe an increasing number - wish to die at home, and I believe we should do everything we can to accommodate them. There also are people who wish to continue their care in a seamless fashion in the institution in which they have been looked after through the potentially curative phase of their illness. However, when that is no longer working and when, sadly, they are in the terminal care phase of their illnesses, for want of a better phrase, they would be quite happy to stay in the same institution in which they had been treated.

There is a real need to have a little flexibility and nimbleness in the way we develop our end-of-life services to accommodate those and facilitate the choice which is critical.

After the very sad conversation with a patient after the active phase of their treatment is over, they very often ask me if we are sending them to a hospice. I tell them we would be delighted to have them go to the hospice if they so wish. However, if they want me to continue being their doctor, we can give them the same care with the expert palliative services which we have in our hospital. It is critically important in developing the strategy that we acknowledge those three elements. Does the delegation believe there should be an emphasis on one direction rather than the other?

The second issue is one of cost. There is no doubt there is a significant amount of waste in the care of people who would not be thought of as formally palliative. Culturally and historically, palliative care has been regarded as cancer-related. That is changing, however. One reason is that the actual post-active treatment/pre-death phase of many cancer patients is quite short. Patients can be quite well, up and about and getting active treatment until that last treatment is no longer available to them. Often that final phase is shorter than expected. There is an increasing recognition that the extraordinary skills built up by palliative medicine doctors and care nurses would be beneficial for other people. I was delighted to hear Professor O’Shea refer to the needs of dementia patients. There are many of them who have been badly disabled by cerebrovascular disease or strokes whose quality of life is miserable, who do not want any more active medical treatment and whose primary concern is the symptomatic quality of their life. There is a real need to focus the energies and skills of the palliative services in directions which have not been thought of as classical palliative services.

With respect to cost, we often have a chat with a patient informing him or her that there is nothing else we can do to make the cancer shrink but we are not giving up and will look after them in a different way. When one does cross that Rubicon, the aspect of the cost of the hospital-based part of the care becomes a lot cheaper. This is apparent when one discourages the young doctors from enthusiastically ordering the extra tests they read about in medical school by asking them whether it will make the patient feel better or worse. It is also important to cost the different methodologies in end-of-life care.

With respect to the euthanasia debate, I always promise my patients that I will be with them as long as they want and I will not let them die in pain. If one takes that philosophy and undertakes to give whatever level of medication is required to make patients symptoms go away and guarantee patients will die comfortably, that is not euthanasia.

We must acknowledge that we have developed an extraordinary new national resource with one of the world’s true leaders and developers in the field of palliative medicine, Professor Declan Walsh. He has spent a long career in developing the palliative care unit at the Cleveland Clinic in the United States and has come to make his services available to us in Ireland. He is a resource all of us need to tap into in a big way.

Catherine Byrne (Dublin South Central, Fine Gael)
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I acknowledge the work of the National Council on the Forum of End of Life in Ireland lead by a woman I admire much, Mrs. Justice Catherine McGuinness, and wish it well in its conference today. Most families want dignity and love for their loved ones when they are passing on. There is a fear when the word "hospice" is mentioned. However, they provide excellent care for the patient and their families. I had the privilege of my mam dying at home with the help of a palliative care team, as well as the unconditional love of my two brothers who lived with her, minding her to the end. For those who want to pass away at home, we should try our best to make it happen. In the case of my mother, we were glad she could be at home surrounded by family and friends but most of all helped by the palliative care team which brought us into a space where we had never been before and made us very comfortable.

I am surprised the report stated there are only 155 hospice beds available. In 2013, the Health Service Executive, HSE, plan stated 92% of all patients referred to a hospice should be admitted in one week. Given the shortage of hospice beds, how near are we to this target?

I have been to several cremations lately. It is like a conveyor belt with people put in one door and shoved out the other. There is no time for people to stay around and sympathise with the family. It seems to be a constant rush by undertakers to get people in and out on time so that someone else can pass through afterwards. This is wrong and needs to be looked at. What is the trend for cremations? Are they becoming more of an option across the country?

The Irish Association of Palliative Care terms palliative care as life-enabling. In what way does one work towards changing the perception of palliative care? When one hears someone is in palliative care, just like the word “hospice”, people automatically believe the person in such care will die. This does not necessarily happen and people can live for some time with the right care. How can we change that perception of this type of care?

Peter Fitzpatrick (Louth, Fine Gael)
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I wish to put on the record what a wonderful job palliative care teams do as I experienced with my late father and my mother at present. I also want to put on record what a wonderful job the hospices do. Ms Foley stated €73 million is spent on specialist palliative care but it is unplanned and uncoordinated. Will she elaborate on this? It is a service that is doing a fantastic job and I would not like to think there is waste there? She stated 26% of people die in their homes. If one has the support of a hospice home care, one is nearly twice as likely to die at home. Will she expand on that? There are 155 hospice beds but the HSE has stated there should be 450. What is happening to close that gap? Every person has the right to die in comfort and dignity.

Dan Neville (Limerick, Fine Gael)
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I welcome the delegations for their presentations. We are lucky in the mid-west that we have the Milford Care Centre hospice which has allowed many people to pass away at home. Everyone in the mid-west has had some family member given assistance by this hospice.

A debate will open up shortly on euthanasia and assisted suicide. What are the views of the delegations on this? We can all have closed minds that it cannot happen. However, I believe there is going to be a strong and vigorous debate around this issue.

Marc MacSharry (Fianna Fail)
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Are there abuses in the funeral industry? Is there a need for some form of regulation?

Jerry Buttimer (Cork South Central, Fine Gael)
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I must suspend the sitting. I apologise to our witnesses for this interruption, but we are called to vote in the Dáil as elected Members of our democracy.

Jerry Buttimer (Cork South Central, Fine Gael)
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We resume now in public session and I apologise to our witnesses. There were two divisions in the Dáil and one in the Seanad. Senator MacSharry had to leave us because he is the Fianna Fáil spokesperson on a Private Members' Bill in the Seanad. He sends his apologies.

Ms Sharon Foley:

Some of my answers will be combined answers to various questions. Senator Burke asked about 92% of patients being referred in one week. If there are no specialist hospice in-patient beds in a region patients cannot be referred. The HSE simply cannot meet that target.

Several people talked about legal issues and emigration. I reiterate the point that end-of-life care and our approach to death, dying and bereavement is much wider than health. That is why we are calling for a national end-of-life and bereavement strategy.

To encourage people to deal with the legal matters involves raising the debate about dying, death and bereavement in Irish society. Advance planning then becomes part of one's natural life. One plans for the end of one's life when one is well and gets on with living one's life. It should become an everyday practice.

There are things that can be done now. As we speak, the HSE and the Department of Health are drawing up their service plan for next year. The committee can play an important role. There is a need to protect the budget that is allocated to specialist palliative care, protecting hospice home care.

Somebody asked a question about the impact of a hospice home care team on patients. The team is able to come into the home and provide that care at home. It makes a huge difference to patients at the end of life. If a team has a patient with complex needs who requires a bit more care and they cannot provide that care at home, they have no choice but to transfer that patient to the hospice, if they are lucky enough to have one in the area, or the acute hospital. They play a hugely important role but they need to be supported. We have a concern about hospice home care. Invariably, it is provided by small teams comprised of four to ten nurses, which are easily affected by cuts to budgets. One must deal with sick leave, maternity leave or people leaving, or the team may suddenly be halved after a budget cut. That has an impact on the ability to deliver hospice home care.

I reiterate that one of the things that can be done is for projects that have been earmarked to go ahead is to move from a preplanning to a planning stage. Senator Crown spoke about the choice of care location and promising people a good death. In our larger submission, members will see that we outlined all the elements that contribute to a good death. Some of those are well beyond our control. A good death is in some ways a facet of whether one has had a good life, building up good family and social supports, whether one has a belief system, and how society supports people who are dying, so we cannot promise all of those things. However, there are things we can do now to make things better. What we would like to see in a broad end-of-life strategy is the taking into consideration and pulling together of all of these wider elements to produce a coherent road map for the next five to ten years.

Senator Crown spoke about the need to improve skills in acute hospices. We have been advocating for that for a long time. In the past year, the clinical care programme for palliative care has developed a competency framework which has involved all the partners. That is about increasing the skills of health care staff at all levels of the health care system so they have the requisite skills around palliative care and are able to deliver care. We would like to see that competency framework developed.

My response to Senator Crown's and Deputy Neville's questions about what is being done to plug the gaps in the different areas is "Not enough". In the midlands, we have funded a piece of work to look at what might be the care needs of patients in hospices. It found the equivalent of 18 full-time beds are being used all the time for patients with palliative care needs. In respect of the earlier point about much of the budget being spent on end-of-life care, it is there and is being spent on end-of-life care, but we do not know where it is being spent and it is largely unco-ordinated and unplanned.

My colleague will talk about the regulation of the funeral industry. In terms of trends in cremation and the uses of cremation, we do not have the figures to date but all we know is that demand is rising, it is a very unregulated area and it is something that needs to be developed. In respect of the communication strategy, requiring our staff to have good communication skills around end of life is one thing, and we must provide the training and education. If any member wants to take part in any of our training and communication courses across all the Irish hospitals, we would be happy to provide the training or even come into Leinster House to provide that training. Communication in respect of staff is also a facet of the general capacity of our society to talk about dying, death and bereavement. There needs to be a better and more open debate in Irish society about the need to plan ahead and to consider and plan for people who are dying.

Ms Patricia Rickard-Clarke:

In respect of the point made about the level of support that will be available in the future for people whose family members are emigrating, this further emphasises the need for advanced care planning. The Assisted Decision-Making (Capacity) Bill 2013 will contain a provision for the office of public guardian. One of the roles of the public guardian will be to devise codes of practice and a public awareness programme, including leaflets, to inform the public about the need to make wills, allocate enduring power of attorney and prepare advance care directives. It will inform the members of the public about the need to plan ahead for when they lack capacity. That is extremely important. It is also extremely important in that the Bill provides that the public guardian will work with professional groups on codes of practice that will guide these groups. For example, it is terribly important that lawyers have their own practice guidelines on how to deal with these issues.

The tendency of the courts to allow costs to be awarded out of an estate is normal practice, but it is not always the case, depending on the situation. Obviously, that is one of the current rules. Many of the administration cases coming before the courts that are being litigated arise out of people dying in debt, so there are insolvent estates and difficulties arise in how to deal with that. That is one aspect. It is important to note that under the personal insolvency legislation, one of the mandatory requirements for a debtor is to make provision in the case of incapacity or death, so that they will probably draw up a will or allocate enduring power of attorney, which is a very worthwhile provision in that legislation.

I could not emphasise the role of the public guardian strongly enough in respect of public awareness. As I said in my opening statement, the forum is a public awareness initiative, so it is up to all of us in different groups and professions and the forum to promote public awareness of that planning, which is so important. We talked about the training of health care professionals. Many members of the public do not understand that they should go to a specialist lawyer in respect of these issues, which can be complicated and very difficult in particular family situations. It is terribly important that lawyers' skills are improved, and the Law Society of Ireland has a role in that as well. The Law Society of Ireland has issued a number of guidelines, particularly in respect of dealing with older people and vulnerable people, over the past few years, but there is still more to be done in that area.

In respect of the regulation of the funeral industry, there is no bar to entry and no licence provision at the moment. There is no qualification for the embalming of bodies or opening of a crematorium. We need regulation. The council of the forum contains a representative of the Irish Association of Funeral Directors. We have a working group that is looking at these issues and will make detailed proposals in respect of this. We will be making proposals in respect of planning by local authorities for end-of-life situations.

Jerry Buttimer (Cork South Central, Fine Gael)
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Is Ms Rickard-Clarke saying that any person can open an undertaker business with no qualification and no standard?

Ms Patricia Rickard-Clarke:

Yes. There is no licensing or regulation at the moment. Lots of people undertake training.

Jerry Buttimer (Cork South Central, Fine Gael)
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That is not mandatory but is done voluntarily.

Ms Patricia Rickard-Clarke:

Yes.

Jerry Buttimer (Cork South Central, Fine Gael)
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With regard to crematoria, is planning permission-----

Ms Patricia Rickard-Clarke:

Planning permission is issued in order to open a crematorium, but we do not have standards.

Professor Eamon O'Shea:

I will be brief, because my colleagues have covered most of this. One issue that came up was the uniqueness of death and how each death is different. This is critical to maintaining the personhood about which we spoke, particularly with people who have cognitive impairment. Again, I stress that particular groups need special attention in terms of the uniqueness of each death and the need for services to recognise that. In respect of how communities are changing, particularly with regard to age and family structures, a good death requires communities of the living. By that, I mean that we need living and vibrant communities in order for all of us to die well. There must be some public visibility around death and that understanding of death to support the private grief that is associated with it. This is something we need to think about in terms of how we organise health and social care services and how we integrate voluntary, statutory and family views about death. It is critical to keep that community focus on the way we think about a holistic view of health rather than a clinical one all the time. In respect of costs, we need serious scrutiny of how we spend money in the last weeks of life in terms of making good decisions about where best to allocate that money, because we do not know whether some of that expenditure might need to go to other areas that embrace some of these broader social, personhood and holistic elements of life. To make good decisions about where we spend money, we need more information about how we allocate these resources.

Jerry Buttimer (Cork South Central, Fine Gael)
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Senator Crown made that point in his remarks. He used the analogy of the young doctor conducting a battery of tests. Professor O'Shea referred to information about dying as a contentious issue. Have we changed in that regard?

Professor Eamon O'Shea:

It has been five years since we conducted our research. It is interesting that older people, in particular, were willing to speak about death in general but when it came to being specific about their own deaths, there was reluctance on their part and among care staff in residential settings to address this issue. We are learning how to speak openly about these issues but until we get to that point the information deficit will remain. Where we have an information deficit or a vacuum, we can sometimes get bad policy. This is not necessarily because what is going on is wrong but perhaps it is not what people prefer or need at that particular time. That is related to resource allocation. Sometimes we get bad resource allocation decisions because we are not concentrating on what is really important. I do not have extensive expertise in this area but, from an economic point of view, it is important in the last months, weeks and hours of dying. That is what we have to address in terms of the broader strategy if we are to understand these relationships. It is particularly important to get resources to flow to where they can best be utilised.

Dr. Joan McCarthy:

Further to what my colleagues have said about the uniqueness of every death, it is important not to sanitise death or consider it in terms of dying in the surroundings of one's family. There are patients who will rage against the dying of the light. There are awkward patients and others with imperfect families or no families. Health professionals have to deal with those kinds of situations. Doctors and nurses must, for example, work with families and patients who are in conflict or despair. Advance directives like think ahead and let me decide, which was developed by a colleague in UCC, Professor William Molloy, support health professionals and families because they make clear what the patients want.

In regard to Deputy Catherine Byrne's question on perceptions of palliative care, the palliative care specialists coming before the committee in the next session will be able to speak to that subject more expertly than I can. The European and Irish associations of palliative care have conducted research demonstrating that the use of palliative care does not hasten death. If anything, it makes people more comfortable with the process of dying. Pain management is something that accompanies the journey of the dying person. It does not push him or her towards death. It is a gift to all of us to be able to draw on that support.

On Deputy Neville's question about euthanasia and assisted suicide, those debates are about the processes involved. We are only beginning to understand what it means to respect people's autonomy. What does it mean for us as a culture to accept people's choices, preferences and individual responses to their life projects and what obligations do these place on health professionals? In very ordinary ways, people exercising choice is something that is difficult to promote. For example, I was disoriented when I came to Leinster House today because I am not used to the system. I was somewhat disempowered by the entire process. In the same way, patients and their families are disempowered when they enter a hospital because they do not know what is going on. In a basic way, we are only beginning to think about how we can enable people to believe they can participate and have a role in making decisions. We need to develop processes that allow us to debate issues like euthanasia and assisted suicide in a reasonable way that allows sincere people to voice their views and consider national and international evidence. We must also think about the impact such debates will have on the goals of medicine and nursing. What are nurses and doctors supposed to be? Important questions arise in regard to solidarity and communal responsibilities, as well as preserving the integrity of doctors and nurses. As the Deputy noted, these issues are going to be a part of our culture but it is important that they do not sabotage the important subjects we need to discuss in the everyday sense of people dying in hospitals, health care settings or, ideally, at home.

Mary Mitchell O'Connor (Dún Laoghaire, Fine Gael)
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I thank the witnesses for their empathetic presentations and, in particular, for their discussion of holistic death compared to clinical death. I acknowledge their concerns about costs. They are being very respectful with their language in this discussion but when the issue emerges into he public domain, the focus for us will probably be on assisted suicide and euthanasia and some of what they said will be forgotten. How can we separate the two issues to make them work for the person who is dying and his or her family so that euthanasia is not the only focus for the media?

Professor O'Shea advised that we need to upskill doctors and somebody else spoke about upskilling lawyers. Is that happening as part of the training programme for young doctors or do we need to retrain them to deal with death properly?

Jerry Buttimer (Cork South Central, Fine Gael)
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I concur with Deputy Mitchell O'Connor that it is important the issues raised by the witnesses are not lost in the external debate. End of life care will affect all of us. Is it fair to say that assisted suicide will affect a minority whereas we should be looking at the majority?

Dan Neville (Limerick, Fine Gael)
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It is a major ethical issue. We have followed the debate in the UK and studied the report that was prepared in that country. It is an area we will have to consider carefully rather than allowing it to be sprung on us. We should not leave it to the High Court to decide that we must discuss the issue. I am not being judgmental one way or the other.

Ms Sharon Foley:

The forum on end of life, which was supported by the Irish Hospice Foundation, conducted a year long consultation on all matters related to death, dying and bereavement, and we found that the Irish public was willing to engage on all aspects. It is refreshing to see such willingness to get involved in debate not only about bereavement but also the dying process, loss and supporting people at the end of their lives. I have confidence in the committee's capacity to steer that debate and, to reiterate my opening comments, I welcome this initiative as a brave step that is much needed in Irish society.

Ms Patricia Rickard-Clarke:

Most people want to have a happy death at the end of their lives. We have a lot to do before we get into that debate. I am happy to engage in it and if the public wants a debate I am sure this committee will facilitate one. However, we are way behind most other jurisdictions in planning for our deaths and facilitating families through bereavement. We have not even put legislation in place in this regard. On the question of professional training, culturally we are also lagging. All of our professions need to be trained to recognise the right to autonomy and self-determination. Once the legal framework has been put in place, considerable training will be required to understand the legislation.

Professor Eamon O'Shea:

The training should be given not only to medical professionals but also everyone engaged in this area. Reference was made to the holistic approach to dying.

If our approach to dying is truly holistic it must broadly move beyond the clinical, medical and caring areas into an understanding of what is needed around death.

This debate should be about the living. The living are living until they die and it is about how we create the quality of life and what we consider to be a just, human-rights-based approach to dying, but it must be emphasised and placed in the context of living and how living takes place right up to death. It is up to us to shape that debate. It incorporates pain relief, counselling and bereavement, but it is about how we constitute the quality of life associated with the living as we approach death.

Dr. Joan McCarthy:

I reiterate what my colleagues have said. It is very much about the nuts and bolts, the ordinary everyday and acknowledging "death" and "dying" as ordinary words that are not so terrifying. If we take the sting out of those words we will also be less afraid of challenges and debates with regard to assisted suicide and euthanasia.

Jerry Buttimer (Cork South Central, Fine Gael)
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I most sincerely thank our four witnesses for their presentations and the substantive body of work they have submitted as part of their presentation. They are available on the Oireachtas website and will be part of our final report. We have made a very positive start to our series of hearings.

Jerry Buttimer (Cork South Central, Fine Gael)
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We resume for our second segment of hearings on end-of-life care. I remind people to turn off their mobile phones off as the sound made by them interferes with the broadcasting of the proceedings and is unfair to staff who have to listen to buzzing in their ears. I thank our witnesses for attending and apologise for the delay to this part of the meeting. We were delayed by a number of votes in the Dáil. I welcome Mr. Kevin O'Dwyer, Dr. Brian Creedon, Dr. Margaret Clifford, Dr. Karen Ryan, Ms Paddie Blaney and Professor Doiminic Ó Brannagáin. They are all very welcome.

I remind witnesses that they are protected by absolute privilege in respect of the evidence they are to give to the committee. However if they are directed by the committee to cease giving evidence on a particular matter and they continue to do so, they are entitled thereafter only to a qualified privilege in respect of their evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given.

Members are reminded of a long-standing parliamentary practice or ruling of the Chair to the effect that Members should not comment on, criticise or make charges against a person outside the House, or any official by name in such a way as to make him or her identifiable.

I thank the witnesses for their participation this morning and for their forbearance this afternoon. Mr. Kevin O'Dwyer is here on behalf of the Voluntary Hospices Group and is also CEO of Marymount Hospice in Cork. He does Trojan work in Cork, and I thank him, all his staff and volunteers for what they do in Cork. I invite him to make his opening statement.

Mr. Kevin O'Dwyer:

I am delighted to have this opportunity to address the joint committee on behalf of the Voluntary Hospices Group on the subject of specialist palliative care services in Ireland. The Voluntary Hospices Group is a membership group, representative of all the major voluntary specialist palliative care service providers in Ireland. It provides 139 of the 153 hospice beds in the country, with another 46 beds ready to be opened. In addition, all of the members operate specialist community services and day care services.

The revenue budget of the group is €53.5 million of which 69% is contributed by the State. The capital spend by the group in the past five years was €74 million, of which €60 million, 81%, came from fund-raising. The group’s vision is that high-quality palliative care will be available to all who may need it, in all care settings, and in line with national policy and best practice. The goal of palliative care is the achievement of the best possible quality of life for patients and their families.

Current national policy on palliative care is based on the principles and recommendations of the 2001 report of the national advisory committee for palliative care. The report describes specialist inpatient units - hospices - as the hub of all palliative care provision in a defined geographical area. Where specialist palliative-care inpatient units exist, services are fully integrated, with easy movement between the acute and community services, enabling patients to be cared for in the location best suited to their needs at any particular time, be that their home, the community hospital or nursing home, the acute hospital or the local hospice. Unfortunately there are several parts of the country without this key element of the system, while many of the services operate without the full complement of staff and professionals recommended in the report.

The report recommended that there should be eight to ten specialist palliative-care beds per 100,000 of population. This would suggest that there should therefore be between 367 and 458 beds in Ireland based on the 2011 census. The reality is that there are only 153. There are no hospice beds in the midlands or north east, with a token two beds in the south east. It is imperative that the beds waiting to be opened in Cork and Blanchardstown are brought on stream as soon as possible, and that the eight new inpatient units and extensions to four others identified in the 2008 HSE development framework are progressed.

There are major deficits in the staffing levels in the current specialist palliative-care services compared with the levels recommended in the 2001 report, across all disciplines and settings. A 2006 baseline study conducted by the Irish Hospice Foundation confirmed that less than 50% of the posts recommended had been filled, and that an additional 744 staff would be needed to implement the recommendations. As there have been many changes since the baseline study was carried out, in population, in practice, in skill mix, in models of care and in service developments, it would be extremely useful if a new study were initiated. However, this should not be used as an excuse to delay efforts to reduce staffing deficits in existing services. The scale of the challenge will require a phased response.

More than 30% of funding of the Voluntary Hospices Group inpatient units comes from fund-raising and other non-statutory sources, while the 2008 HSE framework document suggests that the percentage for community-based palliative services may even be higher. One of the recommendations of the 2001 report was that the State should fund all core specialist palliative-care services. There was a further recommendation that there should be a protected specialist palliative-care budget. This is essential to prevent erosion of the funding provided to date for specialist palliative-care services, and to protect future investment in the sector, particularly with the new structures planned for the health services.

There is clear evidence that demonstrates significant savings when patients have access to comprehensive specialist palliative-care services, with greatly reduced admissions and length of stay in expensive, acute hospitals. For example, the 2009 national cancer registry shows that just 19% of all cancer deaths in the mid-west, where there are well resourced and developed specialist palliative-care services, were in an acute hospital, compared with 50% in the north east, where there is no hospice.

Earlier studies by the Voluntary Hospices Group showed that the average bed cost in a hospice was over 20% lower than a bed in an acute hospital. Other studies show that the availability of comprehensive palliative-care services minimises the number of patients needing access to either type of bed. Investment in palliative care makes sense.

The voluntary sector has been to the forefront in the provision of specialist palliative-care services in Ireland and is more than willing to contribute to the development of the services in the future.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Mr. O'Dwyer. I welcome Dr. Brian Creedon, chairman of the Irish Palliative Medicine Consultants Association and invite him to make his opening statement.

Dr. Brian Creedon:

I thank the Chairman and members of the committee for the opportunity to discuss what needs to happen to ensure people die well in Ireland. I respectfully suggest that we should be asking a much more important question, that is, what needs to happen to ensure people live well until they die? The Irish Palliative Medicine Consultants Association represents the 35 consultant physicians in palliative medicine in Ireland. These consultants are members and the clinical leaders of the nation’s specialist palliative-care services delivering care to patients and their families across all settings, including the home, acute hospitals and other settings throughout Ireland.

Ireland has a long and proud tradition in pioneering the development and provision of palliative care. Ireland was only the second country globally to recognise palliative medicine as a medical specialty. In 2001 Ireland was the first country to produce a national plan for palliative-care service development and integration, which was subsequently adopted as Government policy. There are many aspects of this plan which have not being implemented. The national clinical programme for palliative care was established in 2010 and has developed many work streams to benefit the quality of care provided to patients in all care settings throughout the country. The principals of palliative care are being taught across all disciplines, at both undergraduate and post-graduate level. Frameworks are being developed by the palliative care clinical programme to ensure the essential elements of the palliative-care approach are embedded in health-care professional training.

Our use of language and terminology in this area is extremely important. End-of-life care refers to that care offered to an individual when death is imminent - when life expectancy is days or even hours. End-of-life care is only a part of what palliative care is and by no means defines palliative care. Palliative care aims to be life enabling and life enriching. It strives to help patients to live until they die. A patient never forgets how he or she is told of a serious diagnosis and the family never forgets how the patient dies. The most important bereavement work is carried out before a patient dies.

Palliative care has been a leader in the development of services that are truly integrated and stretch across boundaries of care settings to reach the patient in the right place at the right time. This integrated approach enables our patients to transfer between care settings, depending on their individual clinical needs and personal preference, for example supporting a patient who wishes to be cared for at home and-or facilitating early discharge from an acute hospital to a hospice bed or community setting. When adequately resourced, we are a service without barriers.

Palliative care works closely alongside all specialties, looking after patients of all ages and in all settings. Traditionally associated with cancer care, the principles of palliative care have been seen to benefit patients with diverse pathologies and now our expert skills are supporting other physicians in caring for patients with heart, kidney and lung disease, dementia, and other neurological conditions such as motor neuron disease. There is a growing level of service provision to children with life-limiting and life-threatening conditions.

Health-care systems in Canada and Catalonia have demonstrated that palliative-care services are cost effective - even reducing overall cost of care - yet greatly enhance the quality of life for patients. This is largely achieved by avoiding inappropriate hospital admissions which are often traumatic for the patient and family, and costly for the health service as a whole. At the same time, early evidence in lung cancer patients is showing that patients receiving palliative care are living longer, despite - and perhaps because of - receiving less aggressive active treatments near the end of life.

It is worth contemplating the impact on patients, perhaps in their last weeks of life, and their families of being admitted through a busy emergency department in the present day. Is this always needed? Surely there must be a way to prevent this happening so frequently.

Our population is ageing and by 2031, the population of those aged over 65 will have doubled. This will increase the numbers of deaths per year and also significantly increase the number of people living with life-limiting illness, all of which will further increase the demand for palliative care. Palliative-care services are readily placed to empower patients and their families by maximising the quality of life and offering choice of care setting.

What needs to happen to ensure people live well until they die? The work of the palliative care clinical programme is focused on improving quality, equity of access based on the need of the individual and efficient use of resources. This programme must continue to be resourced. The emergent new governance structures of health care in Ireland must recognise the enhanced value of palliative care as an integrated service and the need to manage and finance it on this basis. A dedicated budget for palliative care nationally and a single entity responsible for palliative-care services throughout the country would be significant steps to achieve this.

Services need to be adequately resourced as per the recommendations of national advisory committee on palliative care in 2001 to ensure that geographical inequities do not continue and effective care is available to those who need it. As a core essential element of a comprehensive service, the ongoing gross deficits of specialist palliative-care inpatient hospice beds and required staffing in the midlands, the north east and the south east must be addressed urgently. National service plans should address these and other such deficits to ensure equity of access.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Dr. Creedon. I now call on Dr. Margaret Clifford, who is the chairperson of the Irish Association for Palliative Care.

Dr. Margaret Clifford:

I thank the Chairman and members of the committee for inviting me here today, as chairperson of the Irish Association for Palliative Care. While I am a specialist working in palliative care, I am here on behalf of the board of the Irish Association for Palliative Care, a representative organisation of all health-care professionals involved in the delivery of palliative care across the country. It is a collective and expert voice driving patient-centred, equitable and accessible palliative care for all who need it.

As other speakers have also mentioned, palliative care is, first and foremost, about life. It is an approach to care that is life-affirming and life-enabling. I once looked after a gentleman who had developed a pressure sore on his right hip because he was in such dreadful pain from a pelvic tumour that the only position he could tolerate was sitting or lying on his right side. He said it felt like someone was sticking a hot poker into him. On admission to the hospice, he was in despair. He said it felt like his life was over. After two weeks of intensive pain management, of his physical, psychological, social and spiritual pain, with contributions from all the members of the interdisciplinary team, he was discharged home a changed man, with follow-up from the community specialist palliative-care team. On discharge, he said that he now felt he could live again and enjoy the simple things in life. He subsequently attended his daughter's wedding and died many months later in his own home.

We are delighted the committee is asking the question what needs to happen to ensure that people die well in Ireland. I echo what Dr. Creedon has said that we need to ask the question what needs to happen to ensure people live as well as possible right up until they die. Access to palliative care is the answer and we propose to elaborate this under the headings of when, where, how and by whom.

When is palliative care needed? Although the gentleman I just described had cancer, the palliative-care approach is applicable across all illnesses that cannot be cured, all ages and in some cases from the time of first diagnosis. Most deaths in Ireland, other than road traffic accidents, poisonings and suicide, can be anticipated in some way by the treating clinicians. The international literature suggests that, if a clinician answers, "No" to the question, "Would you be surprised if your patient died in the next six to 12 months?", then a palliative care approach should be considered. This could be the entry point to an informed discussion between the treating clinician, the patient and, if appropriate, the family.

Where should palliative care be delivered? Palliative care is an approach to caring for people with illnesses that will not be cured - it is not about a geographical place. In specialist palliative care we aim to provide a service without walls, going to wherever the patient is, literally, as Dame Barbara Monroe, chief executive of St Christopher's Hospice, puts it, to deliver "palliative care in the bed you're in", whether that bed is in an acute hospital, community hospital, nursing home, hospice, or indeed the patient's own bed in his or her own home. Unfortunately significant inequalities currently exist in specialist palliative-care service provision across the country, and the range of services that people with advanced disease can access is hugely variable according to where they live.

How should palliative care delivered? Specialist palliative care works best as an integrated programme, which means combining inpatient hospice beds with hospital-based inpatient and outpatient services, community services, bereavement care, and education and research services, with seamless pathways between one care setting and another, so that patients and their families can access the element of care that is most appropriate at any time.

An example would be a specialist palliative-care programme providing in-reach to community hospitals and nursing homes, so as to avoid the necessity of sending elderly patients to the emergency department inappropriately and, if and when these patients are admitted to hospital, that their discharge back to a more appropriate setting is expedited. Similarly, specialist palliative-care services work alongside paediatric and primary-care teams in enabling children with life-limiting illnesses to be cared for in their own homes.

A core value of palliative care is the prevention and relief of suffering. Support provided to family caregivers by the interdisciplinary team throughout the patient's journey and bereavement support after the patient's death help to prevent potential physical and mental ill health resulting from having lost a loved one. It is important that after-death bereavement support for families is factored in when implementing a "money follows the patient" model of health care provision.

Who should deliver palliative care? The short answer is palliative care is everybody's responsibility. For complex patients, specialist palliative care services will be directly involved in delivering care to a patient at any point and sometimes throughout the patient's illness journey, working alongside generalist services and all other specialties. However, there are other patients whose needs are such that they do not necessarily require the specialist palliative-care team to provide care directly to them. Rather the need is for the specialist palliative-care team to provide ongoing education and support to the primary care team or other specialist team looking after them.

Very significant progress has been made in recent years with regard to palliative care in Ireland. Even as recently as 30 years ago, the gentleman with the pelvic tumour I mentioned earlier would simply not have been able to access the service that, in his words, gave him his life back. However, inequalities in service provision remain, and, as mentioned in the earlier session, the next ten years will see an exponential increase in the number of people with palliative-care needs, because of the increasing number of elderly people living longer with ill health and multiple illnesses, and at the other end of the age spectrum the increasing recognition of the number of children with palliative-care needs. Therefore, we need to work together, using an integrated approach, so that we can provide both quality and quantity along with equity to future-proof palliative care, so that those with a life-limiting illness can live the lives they want to lead right up until they die.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Dr. Clifford. I now welcome Dr. Karen Ryan, a consultant in palliative medicine in St. Francis Hospice and the Mater Hospital.

Dr. Karen Ryan:

I thank the Chairman and members of the committee for the invitation to speak today. Thanks to modern medicine, people are living longer with serious and complex illness. However, our health-care system is fragmented and difficult to navigate, just when the needs of chronically ill patients are growing at a rapid rate. Also, service users are ageing and their needs are placing additional demands on health-care provision.

The major challenges that face today’s health-care system are clear. The need for effective and inclusive solutions to these growing problems is urgent. Palliative care can help in meeting these demands. People with serious illness want the types of services that palliative care provides and they expect today's health-care system to deliver those services.

Forward-looking jurisdictions understand that palliative care is a triple win - as beneficial to the patient as it is for the health care team as it is for the health care system. They recognise that the provision of palliative care is the responsibility of the entire health care system and not just specialist palliative care services. Both generalist and specialist services have a part to play in the effective treatment and care of people with life-limiting conditions.

When considering the question of what needs to happen to ensure that people die well in Ireland, it is important to remember that uncertainty is an integral part of dying. Contrary to popular belief, the transition towards dying is often not a clear-cut or linear process, and protocols or pathways that utilise so-called prognostic triggers are often imprecise, lack clinical nuance and fail to reflect the complexity of decision-making in this area. The term "end of life" is one that is ambiguous as it may be variously interpreted to cover the last year, the last month, the last weeks or the last hours or days of life.

End-of-life care is not the same as palliative care. End-of-life care is an imprecise term but implies time-defined care. It is a quantitative rather than qualitative descriptor that excludes the purpose of care. In contrast, palliative care is not time-confined but it is goal-oriented. The discipline of palliative care helps patients to live until they die, whenever that occurs. Both comfort-promoting and appropriate disease-modifying interventions can coexist in the integrated model of palliative care provision. This encourages a needs-based approach to palliative care provision rather than depending on a clinician’s uncertain ability to make a diagnosis of dying.

It is important to recognise the significant work done to date in Ireland in developing palliative care and improving the care provided to people at the end of life and to use that as a firm foundation for moving forward. We have a strong tradition in this area and there has been international acknowledgement of our achievements to date. In 2010, The EconomistIntelligence Unit ranked Ireland fourth out of 40 countries overall in its quality of death index. This acknowledgement provides an indication of what can be achieved by a visionary and universally accepted palliative care strategy, leadership on a national and local level and community engagement. We are indebted to all of those politicians, civil servants, managers, health and social care professionals, service users, advocacy organisations and members of the public who have made such efforts to promote, develop and provide palliative care services. However, significant deficiencies in palliative care provision remain.

Health system strengthening can be defined as any array of initiatives and strategies that improves one or more of the functions of the health system and leads to better health through improvements in access, coverage, quality or efficiency. The World Health Report 2000 identifies the four key functions of the health system as stewardship, financing, human and physical resources, and organisation and management of service delivery. Levers for strengthening palliative care provision will be considered in each of these areas in turn.

The stewardship or governance function reflects the fact that people entrust both their lives and their resources to the health system. A variety of possible levers may be exercised to improve palliative care service provision including maintaining alignment of palliative care across policy, commissioning and services. This principle should be reflected in the assignment of the palliative care function to designated senior personnel in the relevant organisations; ensuring that a strong accountability mechanism that clarifies palliative care budget allocation, expenditure and funding requirements exists; providing support to raise awareness for specific palliative care messages and behaviours; and ensuring that palliative care is part of all health and social care policies for non-communicable diseases.

Health financing is a key determinant of health system performance in terms of equity, efficiency and quality. The following levers may be applied to ensure adequate funding for modern, responsive palliative care services: reviewing the specialist palliative care budget to address deficiencies in service provision and ensuring that palliative care is made a funding priority; and ensuring that palliative care is commissioned and delivered as an integrated service regardless of setting and funding mechanism applied.

The third function of the health system is the management of its human and physical resources. The following levers may be applied: developing a generalist workforce with appropriate palliative care skills; facilitating health care services to support working practices that allow staff to most effectively use their skills to provide quality palliative care including dedicating sufficient time to patients and their carers; ensuring affordable access to equipment and medications necessary to provide quality palliative care in the community; supporting the appropriate redesign of the infrastructure of health care facilities to ensure accessibility, comfort and dignity for service users; and investing in palliative care health information systems.

The final function of the health system is in the organisation and management of service delivery. Health services are the most visible function of any health system. A number of opportunities exist in this area to improve palliative care provision such as addressing the deficits in palliative care bed provision and shortages in specialist palliative care staffing; increasing access to in-home support, including access to 24-hour, seven-day on-call support and support for carers; increasing access to rehabilitation and respite care as required; increasing recognition of and service development for bereavement care for families and carers; realising continuity of care by integrating existing resources and systems to provide for co-ordinated case management systems and promoting linkages between specialist palliative care services and other parts of the health system; supporting palliative care practice through the promotion of the palliative care clinical programme - at this point I ought to declare my interest in so far as I am the clinical lead of the palliative care programme; and supporting research that examines the most appropriate ways to assess and monitor palliative care service provision.

Palliative care represents a paradigm shift in the management of life-limiting conditions, providing interdisciplinary co-ordination and team-driven continuity of care while efficiently utilising health care resources and delivery systems. Addressing outstanding deficiencies in palliative care provision offers a key solution to current challenges facing the health care system and will help people to die well in Ireland.

Jerry Buttimer (Cork South Central, Fine Gael)
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Our next speaker is Ms Paddie Blaney, director of the All-Ireland Institute of Hospice and Palliative Care. You are very welcome.

Ms Paddie Blaney:

I thank the Chairman and members. I am delighted to have this opportunity to address the joint committee on behalf of the All Ireland Institute of Hospice and Palliative Care, AIIHPC. The institute is a collaboration of partner organisations and a mixture of care providers and academic institutions from the Republic of Ireland and Northern Ireland, originally having 12 partner organisations but now numbering 14 and soon to be 17. This is a collaborative spanning all major hospice and palliative care providers and all nine universities on the island of Ireland. Palliative care experts from across the globe are collaborating with the institute. It is from this rich and diverse collaborative base that the institute seeks to achieve its aim, that is, an improved experience of care.

As requested by the committee, the scope of this submission is specifically focused on specialist palliative care. We ask the committee to note that the remit of the institute also embraces general palliative care provision in the wider health and social care settings as well as work with users, carers and communities to help achieve greater awareness, understanding and engagement.

The vision for the institute is that people across the island of Ireland living with a progressive or long-term illness experience the best care possible up to and including the very last days of their lives. Our vision recognises that this is a journey that may span a number of years, not just months. In this vision best care is synonymous with the goal of the best possible quality of life. The institute is helping to make this happen by working closely with all those involved to increase research, enhance education, create resources and influence policy.

Regarding increased research, initial funding has helped lay the foundations of a palliative care research network, the PCRN, on the island of Ireland. Eight research projects are under way aimed at addressing social justice aspects, better measurement and evaluation and looking at how to transfer learning from research into practice. Work identifying palliative care research priorities and exploring the application of technology sector solutions to meet palliative care needs is also under way.

The institute partners constituting all key players on the island affords opportunities to collaborate for high-quality, focused and meaningful research. The PCRN also affords excellent opportunities initially for European and international partnerships and ultimately becoming a global player in palliative care research and development. In terms of what is needed, it includes infrastructure support to ensure the basic research network architecture is sustainable; support to pursue research programmes; support to secure funding from European Union programmes and initiatives and to secure international and global partnerships; and funding to support early career researchers.

The right education is vital. We have worked with the Health Service Executive to identify palliative care competencies to underpin all undergraduate and postgraduate professional education. We have also worked with partner organisations to expand information on available education programmes both across the island of Ireland and internationally. We are working with hospice education providers to ensure more education is made available on a modern electronic learning platform. We have supported leadership development, all-island network developments and visits to exemplar sites across Europe and internationally, ensuring the learning is brought back to the Irish palliative care community.

In terms of what is needed, workforce planning must include funding for workforce development, that is, staff should be released to undertake development. Palliative care educators must be supported in their efforts to assist in the education and development of the general palliative care provision. There should be more support for the leadership development of palliative care practitioners at all levels and in all sectors.

Regulatory bodies should seek to ensure that palliative care principles underpin all undergraduate and postgraduate education programmes.

The institute is also working to develop resources and we are leading an initiative aimed at providing a modern communications and learning hub aimed at three main audiences, including palliative care professionals, adults receiving palliative care and children and young people receiving palliative care. All three audiences will be able to avail of education, skill building and awareness-raising programmes housed in a modern interactive learning platform. Co-ordinating one point of access to a myriad of palliative care information and provision will have profound benefits for all these audiences and establish a valuable resource. So what must happen?

Commissioners and providers of palliative care services within both jurisdictions must engage with and help resource this initiative. We would welcome government support for a wide marketing and awareness campaign in 2014, and opportunities should be taken at the national level to collaborate with the technology sector and ensure our populations might universally access this important resource.

The institute, representing the research, education, practice and policy interests of palliative care providers, is working to contribute to policy development and evaluation. The institute is inviting and facilitating discussions around key policy developments, trends and emerging issues on an all-island basis between the two jurisdictions, recognising that there is significant opportunity for synergy and possible joint policy drivers. Support has been given by ministerial colleagues in both jurisdictions for the institute to provide a presentation at a forthcoming North-South Ministerial Council. The institute should be included in policy and service developments so as to contribute, and where possible, align work activities with key national priorities. The institute could contribute to the Republic of Ireland’s World Health Assembly delegation, where appropriate, to help influence relevant WHO resolutions. It could be funded to undertake policy evaluation or strategy developments where required.

A palliative approach to care may be appropriate for many people across the age range, and for all of these people the goal of care is quality of life. We recognise that not all people who require it receive this type of care and many do not receive it early enough. In establishing the institute, palliative care leaders are hopeful that as our health care systems seek to provide the right palliative care resources in the right places and at the right time, the institute can support the quality and capacity of those specialist palliative care resources. We thank the committee for its attention and relay our best wishes on what we hope will be a productive series of hearings. We would be delighted to provide any further information that may help the committee in its deliberations.

Jerry Buttimer (Cork South Central, Fine Gael)
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Our final speaker is Professor Doiminic Ó Brannagáin, a consultant in palliative medicine.

Professor Doiminic Ó Brannagáin:

I thank the Chairman and committee members for the opportunity to address them today. My colleague, Dr. Tony O’Brien, in introducing the report of the National Advisory Committee on Palliative Care in 2001, wrote "As a society, perhaps the most sensitive measurement of our maturity is the manner in which we care for those who are facing the ultimate challenge - the loss of life". It is timely, therefore, 12 years on from the adoption of this report as Government policy, that the Joint Committee on Health and Children should revisit this subject. I sat in this room five years ago, the last time the joint committee considered the matter, and the deliberations were extremely helpful and productive in bringing about significant change. I lend my support to the deliberations on this occasion on this vital topic. I do not propose to read from my script because of time limitations but I will concentrate on three key messages. These are the health benefits of palliative care; "upstreaming" of palliative care; and the importance of integration of palliative care.

Dame Cicely Saunders, who is credited with the modern hospice movement, wrote:

I once asked a man who knew he was dying what he needed above all in those who were caring for him. He said, "For someone to look as if they are trying to understand me".

Upstreaming is the incorporation of palliative care into standard care approaches to life-limiting illness. We should draw on the expertise we have seen delivered very successfully in Ireland through the National Cancer Control Programme, with specialist palliative care now forming an integral part of the planning process of treatment for patients. We should seek to incorporate that into other approaches for life-limiting illnesses.

Drawing on my experience, in the north east we have two acute hospital-based teams and three community-based teams. Our service is placed predominantly in the hospital in the first instance and we have shown that we can both detect patients with life-limiting illness earlier and offer them choice, as Senator Crown noted in his earlier comments. By this we can influence the policy on palliative care within acute hospitals to the benefit of all patients. In the 12 years our service has existed in Our Lady of Lourdes Hospital in Drogheda, the number of referrals of patients with a non-cancer diagnosis has increased to 40%. Most importantly, we can influence and have an input into the care management of patients on a seven-day basis, including out of hours.

A third point refers to integration. In most cases, when people speak about specialist palliative care and integration, they refer to the integration of the palliative care services, which are integrated seamlessly from one element to another, including hospice care, care in acute hospitals, care in the community and education and research services provided. This enables navigation of the patient from one care setting to another, to the benefit of the patient. However, when I refer to integration I am talking about the challenge facing palliative care services in terms of integration into existing health care provision models. When Dame Cicely Saunders initially set up the modern hospice movement, she felt she had to move from the existing acute hospital structure in order to develop the model of hospice care. Her ultimate aim was to mainstream the process into acute hospital care. The next challenge for palliative care services is to see us do this, and there are many benefits both to patients and to the efficiency and effectiveness of specialist palliative care services in delivering that.

Jerry Buttimer (Cork South Central, Fine Gael)
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I apologise as Senator MacSharry is manning the benches in the Seanad and Deputy Ó Caoláin has to attend another committee meeting.

Sandra McLellan (Cork East, Sinn Fein)
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I thank the witnesses for their presentations and acknowledge the work they do.

I mention Marymount Hospice in Cork, which is highly regarded. Many people do a lot of fund-raising for it and the staff who work there are truly heroic.

It is very clear from the presentations that the issue of resources and support is a considerable problem. I was struck by the lack of palliative care beds - there are only 153 - and by the fact an extra 744 staff are required to implement the recommendations. We really need to look at that.

In regard to palliative care health information systems, the need for investment and the lack of capacity in measurement and analysis, will the witnesses expand on that? How could it be improved? What information are we currently lacking for further analysis?

In regard to palliative care not being geographic and going to wherever the patient is, what proportion of palliative care patients are treated in their own homes? Is there much of a difference in terms of the cost of treating them at home, in a nursing home or in a hospice?

In regard to the initiative focused on providing a modern communications and learning hub with four components aimed at three main audiences, is that ready to go or does it need financing and resources? If so, are they expected to be forthcoming? If not, when might it be initiated? I agree with the point on terminology and language and that we should not look at how to die well but at how to live well until one dies. There is a substantial difference.

I refer to the point on the need for a single entity. Will the witnesses elaborate on the type of entity necessary? Would it be under the Department or the HSE, a stand-alone national body under the auspices of the Minister or another model? Would it require a dedicated budget?

John Crown (Independent)
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What is the number of palliative care consultants in Ireland, in terms of a league table, by international standards?

Mary Mitchell O'Connor (Dún Laoghaire, Fine Gael)
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What are the range and depth of palliative care services in acute hospitals?

Colm Burke (Fine Gael)
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In regard to the whole area of home care and taking into account the problem of limited budgets, certainly for the next 12 months, what would the witnesses prioritise in terms of trying to improve the home care available? Is it a case of upskilling existing staff or are there other measures which could be taken to help to ensure the amount of home care available and the support needed is there?

Professor Ó Brannagáin's submission was on the area of education. Is palliative care included in medical training or do we need to be more conscious of its inclusion in all areas of training, whether in regard to nurse training, medical training or even training for home carers? Is there a need for a lot more work to be done in that area and to put in place comprehensive training programmes for people who intend to stay in the health care area in the long term?

Marie Louise O'Donnell (Independent)
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It was an education to be here. I am more silenced by what the witnesses had to say but also informed. Mr. O'Dwyer made a great case on why, financially, we should use palliative care, which was tough to do. He said palliative care brings down the cost of general health care. Will he talk a little more about that? He said the cost was €74 million and €60 million was raised voluntarily. Will he talk a little more about that also?

Professor Ó Brannagáin quoted Cicely Saunders, who wrote:

I once asked a man who knew he was dying what he needed above all in those who were caring for him. He said, "For someone to look as if they are trying to understand me".

Are the witnesses advocating that we give more attention to integrating palliative care back into the acute hospital setting and that Cicely Saunders had to take it out to find out about bringing it back in?

Jerry Buttimer (Cork South Central, Fine Gael)
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Mr. Dwyer and Dr. Creedon referenced the cost of the hospice bed. Dr. Creedon referred to the model in Canada, Argentina and Catalonia. Is there any willingness in the HSE, which is the overarching body, to engage in a meaningful way to make this a reality? From a purely personal point of view, it is probably much better for people to be in Marymount Hospice or somewhere else. A computer printout of a budget will show costs are down by 20%. Is there any willingness by the HSE to engage on that issue?

Mr. Kevin Dwyer:

I will start with the original questions because there are a few cost issues there which is where I pitched my presentation, knowing that my colleagues would look at the quality issues which is what palliative care is about. One cannot provide palliative care at any cost but on its own merits, the arguments are there that it should be provided. I stand over the good news about the economics of it. That figure of 20% dates back prior to 2008 when so much pressure came on our finances. Whatever savings were made in the acute hospitals would be mirrored in the hospices. Our budgets would be 15% lower than five years ago and yet we are delivering more in the way of activity. We are very conscious of cost in palliative care. It is not about providing whatever one can for every patient; it has to be done on a business basis.

We work very closely with the HSE. Every provider has difficulties in fighting its case and protecting its budget but there is a willingness on the part of the HSE to engage. It was involved in the baseline study and in the 2001 report and it has a framework document on how to deliver the extra beds and where they are needed. It has costed all of that. Obviously over the past five years, there was not much progress towards that but, nevertheless, these are its documents which it is anxious to implement.

Senator O'Donnell asked about the mix. The voluntary sector has provided 81%. I say "we" because, as Deputy McLellan said, it is the people of Ireland who contribute. It is not, by any means, our money. The people contribute 31% of the running cost of the voluntary inpatient units but they contribute 81% of the capital costs. There is project in Tralee, which is one of the 16 capital projects and one of the eight inpatients units to be built. The Kerry Hospice Foundation has committed to providing 100% of the capital cost on the understanding that the HSE will come on board with the revenue, which is the hard bit.

There is a good partnership that delivers. There are active projects, with one on the books in Waterford and others in Castlebar and Kerry. Things are happening. Blanchardstown is ready to go, having been funded 100% on the capital side from donations. Negotiations are ongoing with the HSE as to how to open those 24 beds.

Jerry Buttimer (Cork South Central, Fine Gael)
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Mr. O'Dwyer stated in his presentation that 30% of funding for his organisation comes from volunteers.

Mr. Kevin O'Dwyer:

No; I will clarify that point. I stated that 31% of funding is not statutory but that figure would include a couple of areas. I am linking Blackrock with Harold's Cross and Blanchardstown with Raheny, but of the six providers, three have insured beds, which provides a substantial part of their funding. We also run education courses as part of our remit to deliver the skills needed for general as well as specialist palliative care, and we generate income from that. Perhaps it is not the case for all of us, but certainly in Cork we have had to charge for car parking. We have many sources of money - it is not just from fund-raising, standing on the corner with a bucket. We have been imaginative in how to do this because we have to be, and we have managed to increase our activity over those five years.

Dr. Brian Creedon:

I will continue from Mr. O'Dwyer's point about the economic arguments in the Chairman's question in terms of the HSE engaging in regard to these costs and potential efficiencies. It is difficult because it is a complex area. The HSE is quite fragmented in terms of budgets and so on. When one looks at the total system perspective rather than at individual components, there are potential savings to be made in the acute hospitals and so on from the effective use of palliative care.

Another difficulty is that we are in fiscally challenging times. Sometimes there has to be an outlay to get a return, which is very difficult at present. It has been demonstrated - particularly in Canada, which has quite a similar model of palliative care to ours - that when such care is resourced properly by empowering patients and providing high-quality care overall there is a reduced call for services. To extrapolate, this works if patients can access the care they need at home rather than having to present themselves to a hospital late at night, where no records are available, where they have tests done that may not need to be done, getting very expensive care that may not be the most dignified or comfortable care for them. That is not an efficient use of resources. The arguments lie in that area.

It is important to point out that there are costs, however, and although there may be savings overall, offering patients choice is also important. As Professor Ó Brannagáin said, some patients, perhaps those with a cancer diagnosis, will spend a lot of their time in an acute hospital and this may be the right place for them to die. They know the staff and are familiar with the services. We have to be careful about suggesting that all people need to die at home. The choice is theirs and it is contingent on other things. It may be related to whatever issues they are dealing with at the time, be these psychological or medical.

I will address a few of the other points made about the services that are provided in acute hospitals. We are fortunate that every acute hospital in the country provides palliative care, with palliative medicine consultants and palliative care nurse specialists in attendance. There are some deficits. The advantage in doing it this way, judging by my personal experience, is that we can facilitate the effective discharge of patients. Where families feel empowered such discharges are much more likely to be successful, from the perspective of the patient and the family, rather than having the revolving door scenario where somebody goes out and comes back in again 24 hours later because the discharge was rushed or things were missed in the details or in the planning of the services required at home.

Senator Crown asked about consultant numbers in Ireland. These are comparable with developed health care systems in the UK and Canada, but it is important to realise that we are seeing an increasing need for palliative care. As Professor Ó Brannagáin pointed out, given the increased work in acute hospitals and in dealing with people who have a multitude of illnesses, there may be a need for more consultants and other staffing resources, as well as in our fabric or infrastructure in terms of hospice beds and having community support beds to empower patients to be where they want to be, which is ideally as close as possible to where their families want them.

Senator O'Donnell's point is very important. A hospice is not the right place for everybody. It is about offering choice rather than being prescriptive, saying to people that if they have such and such a condition they should go to this or that place.

Professor Doiminic Ó Brannagáin:

In Ireland we have a ratio of one bed to 130,000 people. The average across the UK is one to 100,000. A recent study in Scotland suggested, for the reasons Dr. Creedon gave, that we probably need somewhere in the region of a ratio of one to 70,000.

John Crown (Independent)
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For most medical specialties we tend to work at about 80% of the UK level, and it is interesting to see the same applies in this case. The UK tends to be at approximately one-fifth of the continental European level and one tenth of the North American level. When Dr. Creedon said our ratio was comparable to that in other centres my impulse was to say it would be a first for Ireland if that were so, because there is no other specialty where that is the case. I suspect we are very low by non-British standards, because Britain has a very unusual health system.

Dr. Brian Creedon:

How fortunate we are that palliative care and medicine have been driven through the British Isles and Ireland in the past 20 years.

Dr. Margaret Clifford:

I thank all the members for their comments and questions. I will pick up on some of the points. When we talk about palliative care not taking place in a geographical location and about going to wherever the patient is, we need to bear a few things in mind. One is that we must be a little careful about the fact that the place a patient is in, particularly the place where he or she dies, is a very simple piece of information. It is black and white. One died at home or one did not; one died in hospital or one did not. We can access that information relatively easily because it is on the death notification form. We can get it from the Central Statistics Office. There is so much complexity around this point, however. When people are asked where they would like to be cared for, or to die, so many what-ifs are built into that. If somebody were to ask me that question I might say my choice would be at home, ideally, but that would only be so if I had about ten other different conditions satisfied. The way we interpret that information is important. When we talk about bringing palliative care to where the patient is, we must remember that the patient will be in many different places and circumstances throughout his or her illness. I echo what Dr. Creedon said about what we might say when we are talking about this as an abstract concept, when we would say home was the ideal. Home is not always the ideal, however. It very much depends.

What do we know about home palliative care? I refer to the evidence on this because it is so very difficult to gather evidence on the effectiveness of palliative care. The outcomes we effect are about matters such as comfort and quality of life, which are very difficult to measure. We know from a large review that brought together the results of 23 international studies that patients who received home palliative care services had significantly better symptom profiles and were more than twice as likely to die at home, with all the provisos we have mentioned.

I pick up on the point about education. We were talking, appropriately so, about education and training. We would need to have a broad view of that because such education and training take place in so many different ways. Of course it is about formal education, both undergraduate and postgraduate, and about training programmes. However, there is quite a lot of educational support that takes place in terms of the care of individual patients. I spoke earlier about the fact that palliative care and specialist palliative care are not synonymous. Not every patient who gets palliative care needs the direct care of a specialist palliative care team, but they need the specialist palliative care service to be sufficiently resourced to care directly for those who have more complex needs and also to provide that education we called "shared learning". It is a two-way process when we talk about educating our colleagues in other specialties.

There is an ongoing education and support role in terms of the care of individual patients. It is quite right that we are considering what we need to prioritise. I was asked specifically about home palliative care. I suppose we need to be very careful. At a time of scarce resources, when it might feel like less money is available for research funding, research is more important than ever. When we are prioritising, we have to know that we are putting time and money into interventions that improve patient outcomes. This means it is more crucial than ever to measure such outcomes.

Dr. Karen Ryan:

I would like to respond to the specific question that was asked about clinical information systems. Those of us involved in palliative care are fortunate to have a minimum data set for specialist palliative care activity and some activity in palliative care support beds around the country. The value of the minimum data set is limited because a paper-based system is used by many services. The minimum data set predominantly counts the number of patients who are seen, rather than more sophisticated measures such as the quality of the patient experience and the outcomes of the care they receive. A move towards an electronic system to support that would free up front-line staff to provide care. It would also allow an expansion of the quantity and quality of data collected.

If we are to focus on the idea of continuity of care in clinical information systems, we need to promote the transfer of information across the various settings of care. Essentially, we want the patient and his or her family to have a seamless journey of care. At the moment, information is limited and restricted to the individual settings where patients find themselves. It would be of huge benefit if we had the ability to facilitate the electronic transfer of information across systems.

The out-of-hours issue is also of relevance to clinical information systems. If general practitioners or primary care teams that are looking after patients had a facility that enabled them to communicate effectively with out-of-hours services, including ambulance, emergency department and specialist palliative care services, and if patients were able to register their preferences regarding the place where they receive care or the type of care they might receive in the event of an unanticipated out-of-hours situation, it would be of huge benefit in improving the quality of care provided to patients.

The majority of patients are treated in their own homes. One of the quality performance indicators used in Scotland is the percentage of time that a patient spends at home in the last year of his or her life. We are not able to calculate that from our existing health care system data.

Jerry Buttimer (Cork South Central, Fine Gael)
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Will it be possible to do so in the future?

Dr. Karen Ryan:

Hopefully, with the introduction of the unique patient identifier.

Jerry Buttimer (Cork South Central, Fine Gael)
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I asked the Minister and the officials from the HSE a question about the unique patient identifier at last week's meeting of the committee. Is Dr. Ryan happy that it might progress?

Dr. Karen Ryan:

The lack of such a facility is certainly one of the key factors that limit us when we are making such a calculation at present. Additional infrastructure would be necessary to facilitate its development. If this is done, one of the main limitations will be overcome. We know from Our Lady's Hospice and St. Francis Hospice, which are the two service providers in Dublin, that 80% of our referrals originate in acute hospital settings. The majority of the care we provide to them is provided in their own homes in the community setting. If I recollect the figures from the minimum data set correctly, approximately 8,000 new patients would have received community palliative care services over the course of a year. Approximately 2,000 patients would have been admitted to an inpatient unit, perhaps for two or three weeks before returning home again.

I was asked what I would prioritise in terms of improving community palliative care provision. The staffing issue is a critical one. We need to address the deficiencies in community clinical nurse specialists and, importantly, the allied health professionals within the team. The education of other general palliative care practitioners in the community would also support improved care in the community.

A question was asked about the range and depth of palliative care services in acute hospitals. We have specialist palliative care teams in all model 4, model 3 and - potentially - model 2 hospitals. If one examines the actual staffing ratios of those teams, one will find that they are usually markedly sub-optimal. In many cases, there is no more than a sessional commitment on the part of the consultant to the acute hospital setting, the team consists predominantly of clinical nurse specialists, there are low staffing ratios and very few allied health professionals are attached to the specialist palliative care team.

Ms Paddie Blaney:

I would like to echo what has been said about education and training. My colleagues have covered the other points very well. I absolutely agree that palliative care principles should underpin all professional education and training in this area. The HSE has led some work which will facilitate that. It will be critical to take that forward and make it happen. If we are broadening out our understanding of what palliative care is and the timescale involved, we also need to broaden out who needs the education and training. If we broaden out our understanding of palliative care beyond cancer, we will appreciate that it is not confined to just one bit of the whole health system. In such circumstances, it will become clear that the whole health and social care sector needs education and training. I suggest that we also need to appreciate the need to learn about and understand families and patients, as well as their carers, neighbourhoods and communities. I thank the committee for allowing me to make that illustration.

Professor Doiminic Ó Brannagáin:

I would like to come back to a couple of issues. Mr. O'Dwyer spoke about resources. The minimum need for inpatient beds and staffing that would exist across an entire integrated palliative care programme is described in the report of the national advisory committee. If we could wave a magic wand tomorrow to provide the additional €75 million that is required to deliver such a programme, we would have a major challenge on our hands because we would not have the staff required to deliver all of those services. That brings us back to the issue of education; specifically, the question of whether the education that is required in an inpatient context takes place in a specialist palliative care unit, a hospice or an acute hospital. As has been mentioned, there is no inpatient capacity whatsoever in three areas of the country. As a result, our ability to train people locally who will stay locally is relatively non-existent. That might not be appreciated by health care planners when they are considering this challenge.

I would like to make another point about education. Palliative care is part of the undergraduate curriculum in many of our medical schools, but not all of them. A module on palliative care is offered in many of our nursing schools, but not all of them. Such a module is not provided, in the main, when occupational therapists and physiotherapists, etc., are being trained. My view is that it should be a mandatory part of the basic formation of all health care professionals that they should have core competencies in palliative care. The postgraduate training of doctors and nurses in the medical, surgical and paediatric areas should enable them to maintain their skill sets and thereby ensure they are able to provide palliative care for patients in whatever context they are being cared for.

I would like to respond to Deputy McLellan's question about a public awareness campaign. There are no plans to ramp up the messages to which I have alluded. I believe they need to be getting into the public domain. When most people think about palliative care, they understandably associate it with hospice care.

However, they do not fully appreciate the health care benefits of early incorporation of a palliative care approach into the care management of the patient. I am speaking as much for the general public as for health care professionals. The discussion that takes place needs to be a dynamic process, where the doctor may offer it and the patient is able to respond in an informed way. This would be helpful and worthwhile.

To return to the issue of the acute hospital and the range and depth of services. As Drs. Ryan and Creedon have stated, we have some form of specialist palliative care available in all 42 acute receiving hospitals in this country. However, in the main these are "in-reach" services. Clinical nurse specialists may be based in the hospital, but the numbers are insufficient for the number of acute beds in hospital. Only a handful of hospitals in the country have a seven-day presence of consultants who can provide a same day response to patients, including out of hours. This is an issue that must be addressed.

I was asked what my piece about integration back into hospital means. There is a dichotomy of views in regard to this issue within the palliative care community. I am not speaking for or advocating an either-or approach, but that both approaches should be adopted. There is a need for specialist palliative care units and where they exist as stand-alone off hospital campus units, there is no reason there should be any change. However, we should have an open mind with regard to incorporating specialist palliative care units into acute hospitals also, because of the clear benefits I have ascribed to them. This discussion is at the early stages here. This is inconsistent with the approach in North American and mainland Europe, where service provision of inpatient beds is dominant within acute hospitals.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank all the witnesses for their presence this morning and for the substantial body of work they presented to us in written form. We have had a positive meeting this morning.

The good news for members is that there will be no meeting next week on account of our mid-term break. This committee will meet again on Tuesday, 5 November at 5 p.m.

John Crown (Independent)
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About a year and a half ago, the committee committed to undertaking a widespread consultation process with the staff of Leinster House on the issue of transforming the campus into a smoke free campus. Will the Chair give us a report soon on the status of that consultation process, because we said we would revisit the issue after that consultation?

Jerry Buttimer (Cork South Central, Fine Gael)
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In the absence of the clerk, who is ill, I must defer the answer to that question until the next meeting.