Dr. Karen Ryan:

I thank the Chairman and members of the committee for the invitation to speak today. Thanks to modern medicine, people are living longer with serious and complex illness. However, our health-care system is fragmented and difficult to navigate, just when the needs of chronically ill patients are growing at a rapid rate. Also, service users are ageing and their needs are placing additional demands on health-care provision.

The major challenges that face today’s health-care system are clear. The need for effective and inclusive solutions to these growing problems is urgent. Palliative care can help in meeting these demands. People with serious illness want the types of services that palliative care provides and they expect today's health-care system to deliver those services.

Forward-looking jurisdictions understand that palliative care is a triple win - as beneficial to the patient as it is for the health care team as it is for the health care system. They recognise that the provision of palliative care is the responsibility of the entire health care system and not just specialist palliative care services. Both generalist and specialist services have a part to play in the effective treatment and care of people with life-limiting conditions.

When considering the question of what needs to happen to ensure that people die well in Ireland, it is important to remember that uncertainty is an integral part of dying. Contrary to popular belief, the transition towards dying is often not a clear-cut or linear process, and protocols or pathways that utilise so-called prognostic triggers are often imprecise, lack clinical nuance and fail to reflect the complexity of decision-making in this area. The term "end of life" is one that is ambiguous as it may be variously interpreted to cover the last year, the last month, the last weeks or the last hours or days of life.

End-of-life care is not the same as palliative care. End-of-life care is an imprecise term but implies time-defined care. It is a quantitative rather than qualitative descriptor that excludes the purpose of care. In contrast, palliative care is not time-confined but it is goal-oriented. The discipline of palliative care helps patients to live until they die, whenever that occurs. Both comfort-promoting and appropriate disease-modifying interventions can coexist in the integrated model of palliative care provision. This encourages a needs-based approach to palliative care provision rather than depending on a clinician’s uncertain ability to make a diagnosis of dying.

It is important to recognise the significant work done to date in Ireland in developing palliative care and improving the care provided to people at the end of life and to use that as a firm foundation for moving forward. We have a strong tradition in this area and there has been international acknowledgement of our achievements to date. In 2010, The EconomistIntelligence Unit ranked Ireland fourth out of 40 countries overall in its quality of death index. This acknowledgement provides an indication of what can be achieved by a visionary and universally accepted palliative care strategy, leadership on a national and local level and community engagement. We are indebted to all of those politicians, civil servants, managers, health and social care professionals, service users, advocacy organisations and members of the public who have made such efforts to promote, develop and provide palliative care services. However, significant deficiencies in palliative care provision remain.

Health system strengthening can be defined as any array of initiatives and strategies that improves one or more of the functions of the health system and leads to better health through improvements in access, coverage, quality or efficiency. The World Health Report 2000 identifies the four key functions of the health system as stewardship, financing, human and physical resources, and organisation and management of service delivery. Levers for strengthening palliative care provision will be considered in each of these areas in turn.

The stewardship or governance function reflects the fact that people entrust both their lives and their resources to the health system. A variety of possible levers may be exercised to improve palliative care service provision including maintaining alignment of palliative care across policy, commissioning and services. This principle should be reflected in the assignment of the palliative care function to designated senior personnel in the relevant organisations; ensuring that a strong accountability mechanism that clarifies palliative care budget allocation, expenditure and funding requirements exists; providing support to raise awareness for specific palliative care messages and behaviours; and ensuring that palliative care is part of all health and social care policies for non-communicable diseases.

Health financing is a key determinant of health system performance in terms of equity, efficiency and quality. The following levers may be applied to ensure adequate funding for modern, responsive palliative care services: reviewing the specialist palliative care budget to address deficiencies in service provision and ensuring that palliative care is made a funding priority; and ensuring that palliative care is commissioned and delivered as an integrated service regardless of setting and funding mechanism applied.

The third function of the health system is the management of its human and physical resources. The following levers may be applied: developing a generalist workforce with appropriate palliative care skills; facilitating health care services to support working practices that allow staff to most effectively use their skills to provide quality palliative care including dedicating sufficient time to patients and their carers; ensuring affordable access to equipment and medications necessary to provide quality palliative care in the community; supporting the appropriate redesign of the infrastructure of health care facilities to ensure accessibility, comfort and dignity for service users; and investing in palliative care health information systems.

The final function of the health system is in the organisation and management of service delivery. Health services are the most visible function of any health system. A number of opportunities exist in this area to improve palliative care provision such as addressing the deficits in palliative care bed provision and shortages in specialist palliative care staffing; increasing access to in-home support, including access to 24-hour, seven-day on-call support and support for carers; increasing access to rehabilitation and respite care as required; increasing recognition of and service development for bereavement care for families and carers; realising continuity of care by integrating existing resources and systems to provide for co-ordinated case management systems and promoting linkages between specialist palliative care services and other parts of the health system; supporting palliative care practice through the promotion of the palliative care clinical programme - at this point I ought to declare my interest in so far as I am the clinical lead of the palliative care programme; and supporting research that examines the most appropriate ways to assess and monitor palliative care service provision.

Palliative care represents a paradigm shift in the management of life-limiting conditions, providing interdisciplinary co-ordination and team-driven continuity of care while efficiently utilising health care resources and delivery systems. Addressing outstanding deficiencies in palliative care provision offers a key solution to current challenges facing the health care system and will help people to die well in Ireland.