Speech for Minister Brady at the All Ireland International Conference Palliative Care, Pushing Boundaries in Palliative and End of Life Care
I am delighted and honoured to be here today to open the second day of this extremely important and valuable conference Pushing Boundaries in Palliative and End of Life Care. I would like to thank Susan Foster Chair of the conference steering group committee and Professor Judith Hill CEO of Northern Ireland Hospice for inviting me to be here today to share in this exciting and challenging programme.
In an anonymous 16th century writing, much of the palliative care experience is summarised as follows: To cure, occasionally; to relieve, often: to comfort, always!
As we know, hospice and palliative care is not about a specific building but more about a philosophy of care that can take place regardless of setting.
Ireland has many advantages when it comes to implementing palliative care programmes. The hospice movement in this country as a whole has a long tradition of caring for those with life-limiting conditions and has done much to develop techniques and programmes of care which are specially tailored to meet their needs. The ethos behind hospice care ensures that the quality of life of both the patient and their family is promoted and enhanced. For some patients, the time span between diagnosis and death can be just weeks but for many with a non-curative diagnosis, there can be many months or years of living during which the aim of all involved is to ensure the best care possible.
The difference a multi-disciplinary palliative care team can make to patients in their last months, weeks, days and hours, cannot be over emphasised. Helping patients and their families through this difficult time takes a great deal of skill and commitment. The role of the palliative care team is crucial because it looks for ways to support the patients and their families at a time when everything seems to be out of control.
I would like to congratulate the Northern Ireland Hospice for organising this crucial and dynamic event. This multiprofessional conference provides us with an important opportunity to learn from, and share with, each other. It is an exciting opportunity for professionals working in the area of palliative and end of life care to share knowledge, experience and insights which will improve services for our patients, irrespective of diagnosis or setting.
Palliative Care Services Going Forward
The Health Service Executive has recently completed and published a framework document which was compiled in partnership with all relevant stakeholders, including both the statutory and voluntary sector. It details the required actions and initiatives necessary to address the gaps in palliative care service provision, against the recommendations set out in the Report of the National Advisory Committee on Palliative Care, 2001.
It takes a patient centred approach and ensures that patients’ particular and unique needs are addressed in a holistic manner. The framework sets national priorities which have been agreed by all stakeholders based on solid needs analysis to ensure that services do not develop in an ad-hoc fashion and that any developments proposed in future reflect areas of greatest need. Such an approach ensures a consistent and equitable approach to service provision.
Working with the Voluntary Sector
Palliative care services in Ireland have developed significantly with overall spending on palliative care in 2008 being €78m. In striving to achieve its objectives the Department of Health and Children is extremely fortunate to be able to rely on the support of the voluntary sector that has traditionally been at the forefront in identifying the needs of the community and responding to such needs. The voluntary sector has played a key role in the development of palliative care and many of these developments have been in co-operation or partnership with statutory providers of care.
The Report ‘End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland’ which was commissioned jointly by the National Council on Ageing and Older People and the Irish Hospice Foundation has revealed the need for policy reform to ensure that end-of-life care is recognised as an important public health issue separate to Palliative Care but inclusive of many of its key elements. Unfortunately, research has also found that there is often a taboo in Ireland about death and dying. There is a general and understandable reluctance to face death. This means that people are avoiding considering how their lives might end, and fosters a lack of knowledge of end of life issues.
Advance care directives which are designed to stimulate reflection, communication and exploration of fears and possibilities with physicians and families have been formalised in the UK, but not in Ireland. The main reason given for the lack of uptake is a reluctance to engage with death and end- of- life issues.
However the Law Reform Commission has recently published a report entitled Bioethics, Advance Care Directives which involves an examination of whether a legislative framework should be put in place for advance care directives. The report describes the origins and emergence of advance care directives, in the context of advances in health care and the move towards informed decision making. It discusses the emergence of the debate on advance care directives in Ireland, including relevant case law and the important work of bodies such as the Irish Council for Bioethics and the Irish Hospice Foundation. The Commission concludes by recommending the introduction of a legal framework for advance care directives.
Some commentators have suggested that the attitude and awareness of people in Ireland to death and end of life care is beginning to change, that we are entering into a new era in which death is a matter of public ethics; people are concerned with how people are dying and are beginning to demand the right to a good death.
I hope that this Conference helps to break down the communication barriers in relation to end of life issues.
Children’s Palliative Care
The Report of the National Advisory Committee on Palliative Care published in 2001, highlighted the need for a review of children’s palliative care services. A palliative care needs assessment for children was undertaken and the results published in 2005. The findings of the needs assessment in Ireland were consistent with those undertaken in other countries. A key finding of the assessment was that the preferred location for caring for children with life-limiting conditions is in the family home, with parents receiving adequate professional support.
The Department of Health and Children has recently developed a policy – Palliative Care for Children with Life-Limiting Conditions, which provides a foundation upon which children’s palliative care services can be developed in Ireland. In developing this policy the Department of Health and Children aims to provide a framework within which a seamless service for children with life –limiting conditions and their families can be planned, delivered and accounted for by the Health Service Executive. Ultimately the policy aims to ensure that all children with life-limiting conditions will have the choice and opportunity to be cared for at home. This is currently possible for some, but not all children. The policy is now finalised and agreed by relevant stakeholders. It is expected that it will be brought before Government for adoption in the near future, thus ensuring that children’s palliative care will be given the priority it deserves.
All of us here acknowledge the growing demand that will be placed on palliative and end of life care going into the future. I firmly believe that today, it is more important than ever to combine our respective efforts in planning for the challenges of the future.
Every possible co-operation between public and private health sectors, voluntary organisations and local communities should be encouraged. As we head into uncertain economic times we must work together, to share our insights and expertise with a view to developing palliative and end of life care services to meet the challenges of the future, in an efficient and effective manner and in an atmosphere of mutual support and understanding.
I would again like to congratulate the Northern Ireland Hospice for organising this Conference and wish you well as we work together to improve services for all our citizens.
As Dr. Tony O’Brien, a senior specialist in palliative care in Ireland tells us “Palliative care is about people; it is concerned with ordinary people who find themselves facing extraordinarily difficult situations; the loss of independence, the loss of financial security, the loss of all that is safe and familiar, the loss of friends and family, the loss of future and ultimately, the loss of life”.
Dame Cicely Saunders is credited with being the founder of the modern hospice movement. In fact she is said to have been the first modern doctor to dedicate her entire career and her life, to caring for those at the end of theirs. Throughout she always kept the person at the centre of care ‘You matter because you are you and you matter all the days of your life’.
I would like to pay tribute to each and every one of those staff and volunteer alike, who work tirelessly to bring comfort and solace to patients and their families at what is probably the most vulnerable and frightening time in their lives. Thank you for your truly inspiring and humbling work.
Again I thank you for inviting me here this morning to share this wonderful occasion with you all.