‘A common misconception about hospice and palliative care is that it is solely for those who are at the end’
The Director of the All-Ireland Institute of Hospice and Palliative Care, Paddie Blaney, talks about the establishment of the Institute and the potential for much positive development in the area of hospice and palliative care.
This looks set to be an exciting year, full of opportunities for those involved in the hospice and palliative care sector in Ireland and Northern Ireland, following the launch of the All-Ireland Institute of Hospice and Palliative Care (AIIHPC) in October 2011.
AIIHPC is an all-island organisation, working to promote and improve the experience of supportive, palliative and end-of-life care on the island of Ireland through education, research and policy development and implementation.
The organisation is comprised of a consortium of 12 partner organisations — Dublin Academic Medical Centre (DAMC); Milford Care Centre, Limerick; Marie Curie, Belfast; Northern Ireland Hospice; Our Lady’s Hospice and Care Services, Dublin; Queen’s University, Belfast; St Francis Hospice, Dublin; St James’s Hospital, Dublin; Trinity College, Dublin; University College Dublin; University of Limerick; and University of Ulster.
Through committed stakeholder involvement across the sector, AIIHPC aims to make meaningful, evidence-based contributions to the education, research and policy environments, north and south. Our belief is that a collaborative and comprehensive approach will deliver a better experience for patients and their families. The ultimate aim is to secure the best palliative care experience for our populations.
We are working to bring hospice and palliative care to the forefront of the health policy agenda, north and south. With an ageing population and increasing demands on our economy, we have to ensure that a high standard of appropriate, patient-centred care is available for those with hospice and palliative care needs and, as far as possible, in an environment of their choosing.
The work of the Institute has its core four cross-cutting, interconnected themes, which will be reflected in all areas of our work:
Meaningful involvement of users, carers and communities in the development and delivery of palliative care;
Development of a coherent and collaborative palliative care community;
Supporting the delivery of innovative, high quality education and research;
Translation of knowledge and learning for the development of palliative care policy and practice nationally and internationally.
Dignity and respect
Hospice and palliative care has a long history in Ireland and Northern Ireland dating back to the late 19th Century, with a deep-rooted recognition of the importance of ensuring that all those approaching end of life should be treated with dignity, care and respect.
The concept of an all-island institute was first identified and explored back in 2007. While much positive work was underway, it was felt that a more collaborative approach would yield better results. The Irish Hospice Foundation commissioned a report into the need for such an all-Ireland Institute and after this, the 12 current AIIHPC partner organisations collated a bid to secure the establishment of the Institute. Having secured funding from Atlantic Philanthropies, as well as additional funding from the Irish Hospice Foundation, Irish Cancer Society, the Health Research Board and Research and Development Division of the Public Health Agency, the All-Ireland Institute of Hospice and Palliative Care was born.
A common misconception of hospice and palliative care is that is solely for those at the end. Such care can suffer from an identity crisis, with people hearing the word ‘hospice’ and assuming it is where you go when nothing more can be done just before ‘the end’. This could not be further from the truth. Hospice and palliative care is not just about ‘the end’. Hospice and palliative care is about living as full and as comfortable a life as possible for those suffering from life-limiting illnesses or illnesses beyond cure.
At our launch in Dublin, I was heartened to hear Kathleen Lynch, Minister of State with responsibility for Disability, Older People, Equality and Mental Health, concur with this reality in her comment that for many people, hospice and palliative care is not just associated with their last months of life but indeed their last years of life.
Her thoughts were echoed by Edwin Poots, Minister of Health, Social Services and Public Safety in Northern Ireland, who said: “Palliative and end-of-life care remains one of the biggest challenges facing us. It is a continuum of care that can apply from diagnosis of a life-limiting or progressive condition, right through to care provided at the end phase of life and into bereavement for families and carers.”
I think that through educating the public, our communities and the wider health community as to what hospice and palliative care is and dispelling the myths associated with them, this will be a significant stepping-stone to ensuring that hospice and palliative care features higher on the policy agenda and improves the direct experience of people who require such care.
The excellent team we have been able to attract at the Institute will work with stakeholders across the sector and across the island of Ireland to drive innovation and improvements to service provision, whilst also fostering greater understanding amongst the people of Ireland and Northern Ireland around issues related to death, dying and loss.
'This will be a significant stepping-stone to ensuring that hospice and palliative care features higher on the policy agenda and improves the direct experience of people who require such care'
Dr Sonja McIlfatrick is our Head of Research. This is a half-time position, meaning Dr McIlfatrick will also continue in her current role as a Reader at the University of Ulster and postgraduate tutor for doctoral students in the Institute of Nursing Research. A graduate of the University of Ulster, she has extensive clinical experience in a variety of settings, specialising in District Nursing in 1996.
Dr McIlfatrick’s research career commenced with her MSc in 1999, which looked at district nursing and palliative care and followed on with her PhD in 2003 exploring day hospital chemotherapy. Her current research interests include: palliative care in community settings; supporting carers; and palliative care in chronic illness.
She is the Lead for the palliative care research strand within the Managing Chronic Illness Centre, is Chair of the Northern Ireland Palliative Care Research Forum and is a member of the Palliative Care Research Society (PCRS) and European Association of Palliative Care (EAPC). AIIHPC offers a major opportunity to develop a strategic, coherent approach to research and build significant research capacity North and South.
We will promote a multi-disciplinary approach to research in hospice and palliative care, reflecting the importance of the multi-disciplinary team involved in providing hospice and palliative care. We will also seek to positively engage the public and users in our research activities.
Dr Michael P Connolly is our Head of Education and comes to AIIHPC on secondment from University College Dublin. Having qualified as a Registered General Nurse in 1992, Connolly worked mainly in acute medicine, older person care and palliative care.
He graduated from the Milltown Institute in 1998 with a BA (Hons) degree in Philosophy and from UCD in 2002 with an MSc (Nursing) (Education) and has recently completed his PhD into gay men’s experiences of the Irish health system.
His research and teaching interests include ethical issues at end-of-life; spirituality in health and palliative care; ethical and legal issues in healthcare; health inequalities; and the health needs of gay men.
The Institute will support access to high-quality education for all involved in hospice and palliative care including users, carers and volunteers, helping to create a highly-skilled and trained palliative care community who can respond to a wide variety of needs in a range of settings.
Policy and practice
As Director of the Institute, I am also Head of the Policy and Practice function. The Institute’s approach to policy is built upon the benefits of a strong, cohesive palliative care community, which combines a strong evidence base, reciprocity and engagement with all stakeholders to improve the hospice and palliative care experience for patients and their families. It is crucial that work undertaken by the Institute to inform policy is then translated into practice and this will be an integral part of our work over the coming years.
Dame Cicely Saunders, founder of the modern hospice movement, once said: “You matter because you are you. You matter to the last moment of your life and we will do all we can, not only to help you die peacefully, but to live until you die.” It is this vision that inspires those who work within the hospice and palliative care sector.
Not only does the Institute have the benefit of a robust and energetic management team, but we also have the advantage of drawing on the expertise of an Expert Advisory Board and a group of International Expert Collaborators, all experts in the field of hospice and palliative care and the wider healthcare system, and all who see the great potential benefit of the Institute and have therefore offered their support and strategic counsel to us to ensure we are successful in our mission.
Our remit reaches far beyond our management committee, however. We want to actively engage with all organisations, volunteers and individuals who are directly or indirectly involved in hospice and palliative care across the island and we will seek to influence internationally.
For more information on the All-Ireland Institute of Hospice and Palliative Care, see www.aiihpc.org or email info@ai ihpc.org.