Áine Brady (Kildare North, Fianna Fail)

I thank Senators Mullen, Quinn and Ross for raising this issue and all Members who contributed to the debate. I acknowledge the intention of the motion proposed by Senators Mullen, Quinn and Ross and agree that we are not far apart. The Government proposed its amending motion to clarify the current position regarding palliative care and the level of the Government's commitment to it and to demonstrate the considerable progress made by all parties in the spirit of partnership culminating in favourable international rankings.

Palliative care, as defined by the World Health Organisation, WHO, in 2002, is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. Ireland has a long tradition of involvement in palliative care and was the second country in Europe to recognise palliative medicine as a distinct specialty. In a recent report for the European Parliament, Ireland was ranked second after the UK for palliative care services in Europe. Ireland was also ranked fourth overall in Europe in a recent report, The Quality of Death: Ranking end-of-life care across the world, published by The Economist intelligence unit, a research and advisory arm of The Economist magazine.

The HSE has committed through its national service plan 2010 to delivering services within its Vote. Significant resources are provided annually by the executive for the delivery of services by a range of statutory and non-statutory providers. The investment being directed to palliative care allows for the provision of a wide range of supports, including specialist inpatient beds, other palliative supports in acute hospitals and the provision of community based services. These include 25 palliative care consultants and 26 home care teams nationally.

A number of speakers raised the issue of palliative care for children. In Ireland approximately 1,400 children live with life limiting conditions and in the region of 490 childhood deaths occur each year. Of childhood deaths due to life limiting conditions, the majority occur in the first year of life, with approximately 350 deaths each year. Palliative Care for Children with Life Limiting Conditions: A National Policy was adopted as Government policy on 15 December 2009. It provides a foundation on which palliative care services for children can be developed in the Republic of Ireland. The HSE is progressing phase 1 of this policy, the appointment of Ireland's first paediatric consultant with a special interest in palliative care and the appointment of eight outreach nurses, or two in each HSE region.

The palliative care services five year medium-term development framework was published by the HSE in July 2009. It describes the actions and initiatives required to address the gaps in palliative care service provision against the background of the recommendations set out in the 2001 report of the national advisory council for palliative care. It takes a patient-centred approach and ensures the unique needs of patients are addressed in a holistic manner. In line with recommendations of the strategy, the HSE has recently established an implementation and development committee to monitor progress in the implementation of the strategy at national level. The committee is chaired by the HSE and the membership includes representatives of organisations previously represented on the national council for palliative care, including the Irish Hospice Foundation and the Irish Association for Palliative Care.

The care of a person dying in a hospital is obviously different from that of a person admitted for other procedures. For example, issues of space and privacy may be more to the fore. In addition, spiritual issues may arise in complex ways, sometimes as much for family members and hospital staff as for the person facing the finality of death. A five year national programme, the hospice friendly hospitals programme, was developed by the Irish Hospice Foundation in partnership with the HSE and launched in May 2007 with the aim of ensuring high quality end-of-life care for patients and families by bringing the ethos of hospice care into hospital settings.

The quality standards for end-of-life care in hospitals were launched by the Minister for Health and Children in May and advanced as part of the hospice friendly hospitals programme. They aim to support and enhance the provision of quality patient-centred end-of-life care within all hospital settings, particularly in acute care facilities. They set out best practice on end-of-life care and have at their core the need for greater engagement by hospitals in issues of dying, death and bereavement. They are supported by HIQA which on 23 September launched a public consultation on its draft national standards for safer better health care. These standards will outline to the public, those who use health services and health care providers what is required for high quality, reliable health care services and describe what a good and safe service should look like. When the standards are finalised, HIQA will monitor compliance to assess how they are being followed in practice. In 2012 the authority will prepare for the commencement of licensing as the designated licensing body for all health care services.

I am pleased to announce that the Minister has recently decided to make available national lottery funding of €250,000 to enable the Irish Hospice Foundation to undertake, in conjunction with the HSE, the design and dignity challenge to fund small projects to enhance the physical environment of areas of hospitals relevant to end-of-life care. This money is additional to the €350,000 already awarded to hospice friendly hospital projects for 2009.

The Department, the HSE and the voluntary sector are actively involved in planning for the development of palliative care services in line with the recommendations of the 2001 report. The Irish Hospice Foundation and the HSE undertook an extending access programme and subsequently published the report, Palliative Care for All: Integrating Palliative Care into Disease Management Frameworks, in 2008. The report seeks to identify mechanisms, whereby those who have life limiting conditions other than cancer can ensure their palliative care needs will be met. It focused particularly on three life limiting conditions, chronic obstructive pulmonary disease, dementia and heart failure. Pilot projects are in operation to examine mechanisms of shared care in developing best practice models. The programme has also established links with other chronic diseases where the need for palliative care services at different times of the disease trajectory is recognised. When they are fully under way, a steering committee will be established to guide, direct and co-ordinate the projects.

The report of the national advisory committee on palliative care recommends that bereavement support should be an essential part of all specialist palliative care programmes and offered in all specialist palliative care settings. All HSE regions have a bereavement support service at each of the three levels indicated in the report of the committee. In different hospice settings these bereavement services may include services of remembrance, bereavement information lectures, bereavement groups or individual bereavement support sessions and counselling. The distinction between end-of-life care and palliative care is becoming increasingly blurred. The World Health Organization now promotes a wider application of palliative care to make it relevant to all those with chronic illness and their families in different care settings from the early stages of illness.

The national standards for residential care settings for older people which were approved by the Minister on 17 February 2009 provide a blueprint for the provision of a higher standard of care in nursing homes. The standard of care provided in residential centres is measured against a set of understood criteria. All residential centres for older people, whether public, private or voluntary, are subject to the same core standards on quality and safety. A standard on end-of-life care is specifically identified. It requires that residents at the end of their lives continue to receive care which meets their physical, emotional, social and spiritual needs and respects their dignity and autonomy. The 16 criteria against which this standard is assessed require, among other things, that the resident's palliative care needs are assessed, documented and regularly reviewed; the resident's wishes and choices regarding end-of-life care are discussed and documented and, in so far as possible, implemented and reviewed regularly with him or her; every effort is made to ensure the resident's choice as to place of death, including the option of a single room or returning home, is identified and respected; the resident's family and friends are facilitated to be with him or her when he or she is very ill or dying and overnight facilities are available for their use; following the death of a resident, support is provided for other residents and staff; and staff are provided with training and guidance in end-of-life care as appropriate to their role. The standards are underpinned by the Health Act 2007 (Care and Welfare of Residents in Designated Centres for Older People) Regulations 2009. The regulations, with those covering the registration of residential centres for older people, came into effect on 1 July 2009. Under the regulations, the chief inspector of social services who is part of HIQA registers and inspects all centres providing long-term residential care for older people.

Further developments have been made in end-of-life education and research through the recent instigation of an all-Ireland institute for hospice and palliative care. The combined efforts of hospices, health professionals and academics North and South intend to address end-of-life education needs and put a full research programme in place. The institute will come on stream later this year.

The overall thrust of Government policy on older people requiring care is to offer a range of supports to help them live at home and in their communities for as long as possible. Where this is not feasible, access to modern, high quality long-term residential care services is available. These packages can often include elements of a palliative care or end-of-life approach.

Anyone who has seen a family member or a close friend battle through the latter stages of serious illness will know the trauma it can be for the patient, families and friends. That person would also know of the support and encouragement which the members of a palliative care team provide. There is no doubt that the work of all those involved in the development and implementation of palliative care policy and the provision of services has brought hope and comfort to families and individuals.

The provision of quality care for people living with life-limiting conditions and for their families and carers requires a partnership approach between the statutory and voluntary sectors. It is this very strong partnership approach, which exists in Ireland, that has seen the country rise to the top ranking in Europe in the provision of palliative care services.

The distinction between end-of-life care and palliative care is becoming increasingly blurred. The World Health Organisation also now promotes a concept of palliative care for all with chronic illnesses, and their families, in different care settings from the early stages of disease. There is no doubt that there will be a growing demand for palliative care services as the population ages and life-prolonging treatments are developed further. There will be challenges ahead as services change and evolve to meet the needs of our society. Services will have to adapt and be more flexible in their use of funding while maintaining at their core the person-centred approach synonymous with palliative care.

Some facts are very clear. The majority of people will die while in the care of the health services, be it at home, in hospital or in long-stay care. The need for health care professionals and all those working in health care settings to have knowledge, understanding and sensitivity towards palliative patients is fundamental. The principles of end-of-life care and palliative care should be integral in the basic training criteria of all professions and those working in palliative care settings.

I will refer directly to some of the issues raised. Senator Feargal Quinn spoke about living wills and advance care directives. These issues are being considered by the Department of Justice and Law Reform in the context of mental capacity legislation. There is no legislation covering them and there are legal and ethical issues to be carefully considered.

Senator Ó Brolcháin mentioned primary care teams and palliative care. A HSE primary care national steering group for palliative care has been established recently to review and consider palliative care provision within community and primary care structures. This review will be based on a selection of ten existing primary care teams and will also consider the views of specialist palliative care practitioners, out-of-hours GP services and community pharmacies. On the issue of assisted suicide and euthanasia, there are no plans to develop policy and I assure Senator Walsh that there are no working or other groups formulating policy in the area.

I acknowledge the great work done by the voluntary sector in this area. Many of our hospices are run by this sector, together with an army of volunteers who tirelessly give of their time and of themselves to those who need them at this challenging time, including patients, families and friends. We also have an active voluntary sector which raises awareness and funds to support the parties involved, including the Irish Hospice Foundation. We owe a significant debt of gratitude to all concerned and I can give an assurance that the work is valued and appreciated.

It is clear from what I have outlined to the House that the Government's commitment to end-of-life policies is obvious. I assure the House that we will continue to work with the HSE and all other relevant stakeholders to develop further palliative care throughout Ireland.