Irish palliative care services focus mainly on people with cancer but a newly appointed professor of hospice studies believes it should be there for all who need it. Fiona Tyrrell reports
Although excellent advances have been made in Ireland's palliative care services in recent years, more work must be done to ensure the same services are available to everybody regardless of where they live or what disease they are suffering from. That's according to the newly appointed visiting professor of hospice studies in Ireland, Prof David Clark.
Palliative care services in Ireland mainly focuses on people with cancer, says Prof Clark, speaking this week on foot of his appointment to the new post, which is co-hosted by Trinity College Dublin, University College Dublin and funded by the Irish Hospice Foundation.
"There is a sense in which diagnosis of cancer is a passport to palliative care," he explains.
He expresses his concern that people with other diseases, such as stroke, heart failure or chronic obstructive airways disease, which bring with them distressing physical, psychological and social burdens, are failing to access the supports they need.
Palliative care services must be delivered to people on a basis of need, he says.
Prof Clark has worked in the field of palliative care for 16 years and is professor of medical sociology and the director of the Institute for Health Research and International Observatory on End of Life Care at Lancaster University in the UK.
In his new role he intends to work with colleagues in Ireland to advance the field of palliative care research and education.
The basic principle of palliative care is to "improve quality of life when life is short", Prof Clark says.
"When someone is suffering from a disease at an advanced stage we need to think about them in a holistic way. We need to pay attention to their psychological and spiritual needs as well as physical needs.
"By doing so we can improve their quality of life and at times reduce distress for relatives after death."
The history of palliative care in Ireland has benefited from a "very creative mix" of voluntary, professional and mainstream work, according to Prof Clark.
Services, however, have reached a certain level and now they must move to a position where everybody in need of palliative care can access it regardless of the configuration of their local service, whether they have a GP who knows about the services and regardless of their disease.
The excellent work being done on a local level should be available everywhere to everyone in Ireland, he says.
The 2001 report of the National Advisory Committee on Palliative Care is an important blueprint for the development of palliative care services in Ireland - it sets out what is already established and what needs to be achieved, according to Prof Clark. The implementation of this blueprint must be continually assessed, he says.
There is not sufficient palliative care services to meet demand in terms of beds and trained workforce, according to Prof Clark.
It is estimated that six out of 10 of all dying people would benefit from hospice or palliative care services. Out of the almost 30,000 people who die in Ireland each year, only just over 7,000 people use hospice services.
Hospice care in Ireland is provided in a number of settings including in the eight dedicated specialist palliative care inpatient units (hospices), in the home setting through home-care nurses, GPs and specialist teams, in hospitals and nursing homes.
As well as the specialists who work full-time in the area of palliative care, Prof Clark says some healthcare practitioners working in ordinary healthcare and social care settings should take a special interest in palliative care.
In addition, all healthcare professionals need to know the basic principles of palliative care and know what services are available.
In essence, the hospice must be brought into the hospital and we need to "take the excellent things we know go on in hospices and deliver them to mainstream patients in hospitals, nursing homes and the community", he says.
He says more attention must be paid to research and training. To date, Ireland's palliative care education and research agenda has been "patchy", according to Prof Clark.
Palliative care research is "not glamorous" and a lot of basic research to help understand the basic physical, emotional and psychological issues encountered at the end of life has yet to be undertaken, he says.
A more cohesive approach to research and training must be adopted and there is a need for more attention to be paid to disseminating best practice to the wide spectrum of people involved in the area.
There is also a requirement for greater research into models of service, according to Prof Clark.
"One of the dangers of all healthcare is to fall into the trap of believing that the provider knows best. We need to listen to users, friends and the wider community."
Prof Clark will host an introductory qualitative research day for doctors entitled Conducting and interpreting qualitative research - a workshop for physicians on January 12th, 2006 in Castletroy, Co Limerick. Contact (01) 679 31 88.
The Irish Hospice Foundation offers a public book loan service to allow individuals as well as professionals to learn more about coping with death and bereavement. Contact (01) 6793188.