Ms Mary Burke:

On behalf of Nursing Homes Ireland I thank the members for the invitation to present to the committee today. Nursing Homes Ireland has made a detailed submission already. Therefore, today I will concentrate on the current challenges and possible solutions.

There have been many positive developments in end-of-life care in Ireland, especially the establishment of the Health Information and Quality Authority, HIQA, in 2009. Nursing homes are probably the most regulated area of the health service, and now HIQA has established thematic inspections on end-of-life care. The thematic inspections focus on end-of-life care and are geared at improving standards in nursing homes. Other positive developments include the provision of end-of-life care education for staff working in residential care settings for older people; the establishment of the End of Life Forum; the commencement of the Changing Minds programme; the establishment of the All Ireland Institute of Hospice and Palliative Care; and the Health Service Executive National Clinical Programme for Palliative Care. These are all very positive developments in end-of-life care in Ireland.

Some 25% of all deaths in Ireland occur in residential care settings. It has been recognised that a substantial proportion of patients who die in hospital could be cared for appropriately at home, in a hospice or in a nursing home. It is for that reason that the end-of-life care in nursing homes is very important today. It has been suggested that most people do not die at home because the majority of deaths follow a period of chronic illness. This reflects the wider need for increased consultant-led chronic disease management in the nursing home and greater communication between regular and out-of-hours GP services. It is widely recognised that there should be greater consultation with older people regarding end-of-life care and decisions regarding end of life should be made before the person enters a nursing home.

The HSE Quality and Patient Safety Audit report identified that there is greater and more consistent access to primary care team services among public long-term care patients than among those in private nursing homes. This supports the acknowledgement by HIQA that there is inadequate access to all care services, reflecting a wider funding issue in the sector. The role of the allied health professional at the end of life is widely acknowledged.

A survey of directors of nursing recently emphasised a high level of satisfaction with GP services in nursing homes. However, it was also highlighted areas for improvement, which centred around three main themes: accessibility and quality of service, service delivery, and accountability and sector awareness. It could be argued that the GP is the gatekeeper of care and is therefore in a prime position to commence discussions and plans about end-of-life care before admission to long-term care. This ensures that end-of-life care meets the resident's needs and wishes and that these can be met by the nursing home staff.

Issues have been highlighted by Nursing Homes Ireland members in regard to the provision of services by GPs. They include the charging of an administrative fee by some providers for out-of-hours service - known as Caredoc in the South, but there are many other names for the service around Ireland - refusals to visit by some GPs, and triage by telephone. Also, due to the rural location of some nursing homes in Ireland, it is difficult to get GPs in the out-of-hours service to visit.

Symptom relief at the end of life is very important. It is very important that people who are dying receive pain relief and the care they require. Unfortunately, if a GP does not call this cannot be provided. We recommend that the role of nurse prescribers be enhanced in nursing homes. Unfortunately, nurse prescribers in nursing homes are not issued with a prescription pad for prescribing medication at present. Therefore, their role cannot be enhanced.

The report Creating Excellence in Dementia Care states that up 66% of residents in nursing homes have a dementia. Due to the unpredictable illness trajectory and fluctuating capacity of residents with dementia, many clinical, ethical and legal challenges present, including recognition of the dying phase. It can be very difficult for a GP or doctor to admit that somebody is in the dying phase. This highlights the need for more specialist geriatrician input to assist and support nursing home staff in adequately addressing the needs of residents with dementia within the nursing home throughout their illness and especially at the end of life.

The nurse-led hospice at home service is an invaluable support. However, this service is predominantly during office hours and therefore out-of-hours supports are limited. This view is supported by general practitioners, who highlighted the need for greater access to out-of-hours service, particularly access to consultant-led palliative care teams.

In addition, specialist palliative care services need to be extended to all residents, not just those with a malignancy, to enable greater equity of access to care. The HSE framework document published in 2008 recommended enhancing hospice provision. This has not been achieved to date. There are large parts of the country that do not have access to inpatient hospice services and, unfortunately, some areas have to fund-raise to provide a hospice for their area.

NHI, in tandem with many other stakeholders, is extremely concerned at the narrow definition of long-term residential care services under the nursing home support scheme. The former Ombudsman, Emily O'Reilly, highlighted this anomaly on a number of occasions and in reports. In respect of restrictions for residents in private nursing homes or access to appliances and aids, some of these items are not provided or reimbursed under the primary care reimbursement service. Equipment such as syringe drivers, nebulisers and oxygen masks cannot be reimbursed. Therefore, it falls under the cost of care for caring for people at end of life in nursing homes. The physical environment of many acute hospitals and public long-stay facilities is not the ideal setting for people who are dying. People who are dying deserve private rooms. In private nursing homes, 67% of rooms are private.

The recommendations made by NHI are that the HSE publish the findings of the quality and patient safety audit on primary care team services and outline the actions taken to address the deficits. A formal mechanism for GPs to communicate with out-of-hours services should be implemented without delay. The role of the GP in providing services to residents in nursing homes should be clarified and this should be done in tandem with a full review of the GP contract and education for GPs involved. Registered nurse prescribers working in private health care facilities should be issued with a prescription pad and enabled to prescribe medicines for residents with medical cards. There should be an increase in the number of geriatricians nationally to improve access to diagnosis and chronic illness management in the nursing home. This will prevent the unnecessary transfer of residents to acute hospitals. The hospice at home service should be extended to residents with non-malignant terminal illnesses and should provide for out-of-hours access. Access to consultant-led palliative care teams should be made available to residents with non-malignant terminal illnesses, not just to cancer patients.

The priority actions identified in the 2008 HSE palliative care services framework should be implemented as promised to enhance the access to inpatient and respite hospice services nationally. A Department of Health-led forum or expert group on long-term care, where all the key stakeholders come together and work on a common goal, which is to improve quality of care for residents in nursing homes, should be established. Consideration should be given to the prioritisation of palliative care patients on the fair deal waiting list to facilitate death in a more appropriate place. Unfortunately, people are on a waiting list of nursing homes at end of life and by the time the bed comes up, they have passed away. Legislation pertaining to advanced care directives should be introduced in Ireland. Currently, there is no legislation on advanced care directives. There should be a public awareness campaign and tailored education for health care professionals prior to enactment of the Assisted Decision-Making (Capacity) Bill. Immediate action should be taken to address the deficits and the shortage of nurses in nursing homes. I thank members for their time.