15.1 INTRODUCTION & DESCRIPTION
Palliative Care aims to improve 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, assessment and treatment of pain and other problems, be they physical, psychological or spiritual. The programme complements the wider provision of services for older people and health and personal social services generally. It supports the acute system, particularly cancer services, and integrates acute and primary/community systems to enable patients to be cared for at home for end of life.
Palliative care services for patients with life limiting cancer are an integral part of the effective utilisation of the continuum of cancer services as set out in the National Cancer Control Strategy.
In relation to children’s palliative care, it is estimated that approximately 1,400 children are living with life-limiting conditions in Ireland and that there are approximately 490 childhood deaths per year. Of these, it is estimated that 350 are from life-limiting conditions. Ultimately, the Children’s Palliative Care Policy aims to ensure that all children with life-limiting conditions have the choice and opportunity to be cared for at home. In addition to best meeting the care needs of such children, the policy is also designed to do so in the most cost effective manner and to provide support to families. Phase 1 of the implementation of the policy includes the appointment of 1 Paediatric Palliative Care Consultant and 8 Outreach Nurses (2 per region). The continued implementation of this policy is a key result area of the HSE National Service Plan 2011. Palliative Care is primarily delivered by the non-State (voluntary) sector through Service Level Agreements with the HSE.
15.2 RATIONALE, OBJECTIVES & CONTINUING RELEVANCE
The primary focus of Government policy on Palliative Care, including children’s palliative care, is concerned with quality of life. It is designed to ensure that patients are enabled and encouraged to live their lives to the greatest possible extent, in the manner, and setting, of their choice. Government policy on the area is based on the Report of the National Advisory Committee on Palliative Care (2001). Although not specifically mentioned in the Programme for Government, Palliative and End of Life Care is inherent in the priority to develop Services for Older People overall.
The high level, and long standing, policy is that palliative care services, (both specialist and non-specialist) should be available in all care settings, including acute hospitals and the community. This approach was, for example, reflected in the Report of the National Council for Specialist Palliative Care (2001) and carried through to the Policy for Children with Life-Limiting Conditions (2009). More specific objectives of the programme are:
• Attending to the physical, psychological, social, spiritual and practical expectations and needs;
• Providing support to the family; and
• Preparation for and management of the dying process and death.
In relation to children’s palliative care policy, the key objective is:
• To ensure that all children with life-limiting conditions will have the choice and opportunity to be cared for at home.
The palliative care service is expected to become more essential given the ageing demographic profile of the population and capacity limitations in the long-term care and acute hospital systems. It is a fundamental component of more integrated service delivery.
15.3 PROGRAMME EFFECTIVENESS
Significant improvements have been achieved in meeting the objective of providing high quality palliative care in settings of choice for adults and children in line with resource availability. However, gaps in service provision (eg. home based palliative care or specialist beds) remain in particular parts of the country. In addition, there may be potential to improve outcomes over existing investment/inputs through the achievement of greater consistency in the deployment of staff and other resources as between providers, both statutory and non-statutory.
The effectiveness of palliative care services in Ireland was considered in a study by the Policy Department, Economic and Scientific Policy on Palliative Care in European Union (2007). This report indicates that palliative care services in Ireland have developed consistently over the last number of years to reach a high level of service provision.
15.4 PROGRAMME EFFICIENCY
The level of expenditure associated with palliative care has decreased in the last two years with the budget provision for 2011 €5m lower than the outturn for 2009.
Table 15.1: Trend in Expenditure on Palliative Care 2008-2011 2008
There are currently 657 Whole Time Equivalents engaged in providing palliative care. The trend over recent years is set out in Table 15.2 below. However, it should be noted the other individuals throughout the health systems, such as in acute hospitals, can be involved in the delivery of end of life or palliative care.
Table 15.2: Trend in WTE providing Palliative Care 2008-2011
2008 2009 2010 2011 (budget
allocated)
Total WTE N/A 572 597 657
The key outputs of the palliative care programme and the associated trends are set out in Table 15.3 below. Please note that the totals are monthly averages.
Table 15.3: Trend in Key Outputs of Palliative Care 2008-2011 HSE Service
No. of patients in receipt of intermediate palliative care in community hospitals
80 82 103 125
Totals 3,170 3,378 3,726 3,579
Key reforms targeted for implementation in 2011 in relation to palliative care include:
• Agreed referral criteria and assessment of need for specialist services developed.
• Care pathways, governance arrangements and clinical guidelines developed to support treatment in location of choice.
• Consultant positions in post in line with continued implementation of national policy on Children’s Palliative Care.
• Implementation of new performance indicators yet to be agreed e.g. in relation to increased domicillary specialist care, improved community care, reduced wait times, etc.
A further key reform was the adoption by the HSE of a minimum data set which will improve the availability of data relating to the palliative care programme. Specific information arising from implementation of Phase 1 of the process includes the number of palliative care service users availing of services, and the types of palliative care services being provided/accessed. The HSE has committed in their Service Plan 2011 to further develop the collection of data on the:
• Number of patients in acute hospitals.
• Number of patients accessing day care services.
Further work is being progressed to develop relevant metadata for Palliative Care.
80-85% of annual Exchequer funding relating to Palliative Care has traditionally been channelled through non-HSE agencies. It is intended to examine in greater detail the potential to maximise efficiencies and improve outcomes arising from this investment.
The potential for efficiencies to arise in palliative care through the adoption of new technology will be considered by the HSE in the context of implementation of the report on Assistive Technologies for Older People.
There are legal (definitional) difficulties inherent in defining and then introducing charges for “Palliative Care”. The question of any new charges is being examined by the Department in the wider context of eligibility for services for older people overall.
15.5 CONCLUSIONS, SAVINGS AND REFORM
The Palliative Care programme provides essential end of life care for both adults and children. While improvements have been made in relation to providing high quality palliative care in settings of choice for adults and children, service provision across the country is uneven.
The key focus of reform in the palliative care programme in the period ahead will be to:
• Continue to pursue the objective of national consistency in service availability spanning the different elements set out in national palliative care policy and with an emphasis on supporting individual choice.
• Examine the comparative performance across the sector, where 80 – 85% of services are provided by voluntary agencies, and the degree of patient centred integration between palliative care services and other health services required by clients.
• Ensure further progress on the children’s palliative care strategy to provide families with the choice and the necessary supports to care for their child with a life limiting condition.
Key Reforms:
• Needs Assessment: Referral criteria and assessment of need for specialist palliative care services will be developed and agreed.
• Clinical Guidelines: Care pathways, governance arrangements and clinical guidelines will be developed to support treatment in location of choice.
• Performance Monitoring: New performance indicators in relation to increased domiciliary specialist care, improved community care, reduced wait times among others will be agreed and monitored.
• Data: A Minimum Data Set will be implemented by the HSE which will improve the availability of data relating to the Palliative Care programme.
• Funding of Non-HSE Agencies: 80-85% of annual Exchequer funding relating to Palliative Care has been channelled through non HSE agencies. It is intended to examine in greater detail the potential to maximise efficiencies and improve outcomes arising from this investment.
• ICT: The potential for efficiencies to arise in palliative care through the adoption of new technology will be considered by the HSE in the context of implementation of the report on Assistive Technologies for Older People.
• Charges: The question of any new charges is being examined by the Department in the wider context of eligibility for services for older people overall.
CHAPTER 16
HEALTH PROMOTION AND PROTECTION