Forum on End of Life

Bob Carroll

Issue 392, vol.98, Winter 2009

In January 2009, the Foundation placed advertisements inviting submissions – and there was a good response (from professional, statutory and voluntary bodies; from people recalling the experiences of death of loved ones; from interested professionals – and from the general public). Certain emerging themes can be predicted…

Knowledge and understanding of ‘End of Life’. There is need to make the various stages of palliative care better known (the specialist level; the general level – delivered by health care professionals who have had some additional training; and the Palliative Care Approach : principles to be applied by all health professionals).

Communication at end of life. There is need for greater consultation between professionals and, say, long-term family care-givers. As the end approaches for a patient, the emphasis should not be on prolonging life at all costs, but on enhancing the quality of what life remains. Bad news should be broken sensitively.

Ethical and legal concerns. Should the emphasis not be on advance-care-planning, rather than on Advance Care Directives (which are not yet legal in Ireland) ? There was mention of : the legal issues around pain-control, hydration/nutrition, resuscitation; the dignity of those in cognitive decline; elder abuse; the capacity to make a will; the need for a legal advocate, for ethics committees, and for law reform.

Suitability of care settings for the dying. General-hospital routine today is characterised by scientific testing, physical diagnosis, treatment or cure. This is not geared to the needs of the end-of-life patient (in the way that hospice care is, or nursing at home). The latter approaches, however, are often not a realistic option, given shortages and disparities in provision. A patient ending life in an acute hospital can be exposed to the noise of a ward (even to a mixed-sex ward), to doctors’ rounds and multiple tests – and to the risk of dying alone. The lack of single rooms makes things difficult for visitors.

Responding to the needs of the dying. There should be joined-up working between hospital, community and continuing care service. And palliative care provision should be extended to other sufferers besides cancer-patients. To be welcomed are the National Quality Standards for Residential Care Settings for Older People in Ireland (which have just come into force). The holistic care of the patient includes psychological, spiritual, religious, cultural and social dimensions. Professionals need training in these areas; also, the work of chaplains and pastoral care workers is more important than ever.

Public and policy discourse on end of life. “We will ensure that the needs of all people who require palliative care are met whether this is needed at home, in the community or in a specialised hospice” [2005 Joint Programme for Government].

Bob Carroll was Director of the National Council on Ageing and Older People from its establishment by the Minister for Health in 1997 until his retirement in 2007. He has been commissioned by the Irish Hospice Foundation to prepare the report of the Forum on End of Life in Ireland, “a unique year-long engagement with the public on end-of-life issues”.