Dr. Paul Gregan:

I thank the Deputies and Senators for this opportunity to address the committee on the subject of dying in the community. My name is Paul Gregan and I work half-time as a consultant in palliative medicine and half-time as a general practitioner. I chair the primary palliative care programme, which is a joint initiative set up in 2010 with the backing of the Irish Hospice Foundation, the HSE and the Irish College of General Practitioners, with the aim of identifying improvements and initiatives that would support the provision of palliative care in the community by the primary care team. I represent the Irish Palliative Medicine Consultants Association on that committee.

The real reason we are all here today is to hear about the care of those living with life-limiting illnesses in the community, and about caring for them as they die. Palliative care is very much about the living and how we manage their holistic care from a physical, psychological, social and spiritual perspective. It is also about caring for people towards the end of their lives and it is about how they die.

Care of the imminently dying is a smaller but extremely important part of what palliative care is about; much as care in pregnancy is not all about the birth, palliative care is not all about dying. After-care, in the form of bereavement care, is the continuation of care past death for families and friends involved and forms part of the remit of palliative care services.

We will all have a last year of our lives. Therefore, we all have a real stake in the quality of care that is provided to those who are at the end of their lives now. They are us tomorrow. I have three points to make about their care. The first is about prioritisation. In my work as a general practitioner, palliative care patients stand out as generally among the sickest and most in need. I suspect this is the same across everyone’s practice, whether it is medical, nursing or anything else. It stands to reason that they are therefore in a top-priority grouping for service provision and in many areas, although not in all, they are already categorised as such. For example, accessing a priority discretionary medical card for a person with a palliative care need, with a turnaround time now from application to receipt of a few days, represents a good example of excellence in care. However, not being able to access sufficient carer support when a person is deteriorating or dying, or the unavailability of equipment in the community for this priority grouping, arguably represents a fundamental breakdown in care provision. I would urge all areas of the health service to examine where they can prioritise this care. These patients should be category one in everyone’s book.

The second area is around equity. Different areas of Ireland have different access to palliative care provision. This is true in specialist palliative care; it is well documented that the provision of specialist palliative care beds is inequitable. It is also true in community palliative care at specialist levels - for example, where we have funding for five-day-a-week services instead of seven - and it is also true at generalist levels. For example, in one area there may be only five hours of carer time a week, while five miles up the road there is access to 21 hours of carer time.

Similarly, access to services by palliative care patients under the age of 65, who amount to a quarter of the patients under specialist palliative care, needs to equate to that of those over the age of 65. Arbitrary age cut-offs are not helpful in life-limiting illness. Palliative care patients deserve priority access to a standard, minimum and equitable amount of care in the community.

The third area I would like to cover is nursing. When I ask my palliative care colleagues about palliative care that could be improved upon, they prioritise nursing. The fundamental lack of provision for nursing support to patients and families ranks highest in their table of requirements. We are fortunate that we still have, by and large, a society in which families will do all in their power and ability to help a relative in trouble, but we need to meet them halfway on that and at the moment we do not. There is an urgent need to augment our nursing services for palliative care patients. We need a dedicated budget for community nursing in palliative care.

Dying is something that each one of us will do in our turn. Only one in ten of us will die suddenly. Therefore, we are in a position to adequately plan the individual care of nine out of every ten people, but we are also able to plan adequate care at population health level for those living months before dying and those imminently dying. We need to plan the care of these people. It is relatively inexpensive and it is entirely predictable. We need to do the simple things and the important things well.