Ms Anne Tan:

I thank the Chairman and committee members for the opportunity to present on behalf of the Institute of Community Health Nursing. The ICHN is a professional and educational body established in 1985 to represent public health nurses and community registered general nurses working in primary care throughout Ireland.

Research indicates that 90% of the last year of life is spent at home, that the expressed wish of 80% of people with end-stage illness in this country is to die at home, and that only 26% of the 29,000 people who die each year do so at home. It is apparent there is a great need to improve home care services to fulfil this desired wish.

The World Health Organization definition of palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, including physical, psycho-social and spiritual problems. End-of-life care refers to the care offered to an individual when death is imminent and life expectancy is days or even hours. End-of-life care is part of what palliative care is but by no means defines it. Palliative care services may be structured in three levels of ascending specialisation according to the needs of the patient and family and the expertise of the staff providing it. Level 1 is palliative care approach. Palliative care principles should be appropriately applied by all health care professionals. Level 2 is a generalist approach where at an intermediate level, a proportion of patients and families will benefit from the expertise of health professionals who, although not engaged in full-time palliative care, have had the additional training and experience in palliative care. That would be typical of a public health nurse, community or GN and GP. Level 3 would be the specialist palliative care services, which are limited in terms of their core activities to the provision of palliative care.

For over a decade, it has been acknowledged that people with conditions other than cancer should have their palliative care needs met, and this principle has been adopted in Irish policy documents since 2001. Services for people with life-limiting diseases, including chronic obstructive pulmonary disease, dementia, heart failure, end-stage renal failure and chronic neurological disorders, are still underdeveloped and fragmented in Ireland. A key finding of the children's palliative care needs assessment was that the preferred location of caring for a child with a life-limiting condition is the family home with parents receiving adequate professional support.

Evidence shows that there are many factors that prevent patients from receiving adequate care in the community and which result in the admission of patients to hospitals, nursing homes or specialist palliative care units. The difficulties experienced by carers and relatives were more often a cause for hospital admission than those of the patients. Others found that support at home produced the strongest influence on place of death, with the need for around-the-clock, seven-day nursing care being foremost and access to specialist palliative care advice, specialist equipment, the medical card, social services and receipt of an attendance allowance all showing statistically significant effects.

Of the people who die every year at home, the majority of their care is provided by members of the primary care team. It must be acknowledged that without the input of relatives and lay carers, home death could not be achieved. Due consideration needs to given to the support and resources required by lay and primary carers in the community. Public health nurses and community registered nurses are responsible for a particular geographical area and are key members of the primary care team. They assess the holistic palliative care and end-of-life nursing needs of all patients in the community. They are responsible for co-ordinating and managing the nursing services delivered to the patient in the community, linking hospital, community and specialist service as appropriate. Resources are limited to 9 to 5, Monday to Friday, however, with only planned essential calls at the weekend and public holidays. In most areas, there is very little or possibly no service after 5 p.m and before 9 a.m.

There is emerging evidence to suggest that where people die has an impact on how they die, and that those who die at home and in the place they prefer have a better quality of dying, so to speak, than those who do not. A major inequity exists in the availability of palliative care and specialist palliative care throughout the country due to the way in which services have been developed. The institutionalisation of care at the end of life and eventual place of death does not reflect the wishes of the majority of the population. In the next decade, there will be significantly more people living with advancing life-limiting disease in the community and all of these people will require a palliative approach to their care.

I will address the dignity care intervention. The aim of this service development initiative is to implement and evaluate a dignity care intervention that will be delivered by all nurses to conserve the dignity of people at the end of life in community settings. The ICHN endorsed the palliative care clinical programme which focuses on equity of access based on need of the individual and efficient use of resources. The ICHN recommends that leadership is required from all the relevant stakeholders within service delivery, education, policy and academia; that choice of location for care at end of life should be fully supported and resourced adequately; that all patients who have a diagnosis of a life-limiting condition should have equal access to all levels of palliative care in the community; that due cognisance should be given to the roles and responsibilities of the public health nursing service-----