Palliative Care in Residential and Community Aged Care Palliative Care SA (PCSA) Issues paper –April 2015

Background The ageing demographics of our population are well known, along with the babyboomer desire for independence and choice. Over the last decade or so, there has been a shift in the nature of people entering Residential Aged Care Facilities (RACF). People are deferring admission as long as they can, hence they are older, they are more likely to have a chronic disease (often more than one) and/or dementia, and have higher care and nursing needs. The AIHW Statistical Overview of Residential Aged Care for 2010-2011 identifies that for 91% of permanent aged care residents, death is the mode of separation. Of these, 38% overall die within 1 year of admission (50% for males), and 27% die within 6 months of admission. The Australian Government Productivity Commission Report – Caring for Older Australians (No 53, 28 June 2011) stated that “Aged care is an important component of Australia’s Health system”. It further noted there is “insufficient and inadequate funding for restorative and reablement care; and for palliative and end-of-life care.” The report recommends “visiting multi-disciplinary aged care health teams and measures to allow some sub-acute services to be provided in RACF where cost-effective and appropriate”. While end-of-life care is not defined in their report, palliative care is defined as: Care provided for people of all ages who have a life-limiting illness, with little or no prospect of cure and for whom the primary treatment goal is quality of life. It focuses on ‘living well’ until death. In Aged Care standards documents the understanding of palliative care appears to be linked to ‘terminal illness’ which is often in turn linked to imminent dying: Eg Quality of Care Principles 2014: Schedule 1, Part 3 “Palliative care

The comfort and dignity of terminally ill care recipients is maintained”

PCSA acknowledges the complexity of aged care, with a range of different funding sources – federal, state and private, and the difficult interface between them, as well the complexity of the Aged Care Funding Instrument and its link to Aged Care Accreditation Standards and regulations. We also acknowledge the considerable investment of time and money that has taken place to educate Aged Care staff in palliative care through the development of tools and guidelines such as The Guidelines for a Palliative

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Approach in Residential Aged Care, the PA Toolkit, Decision Assist and Programme of Experience in the Palliative Approach (PEPA) . However we have identified the following structural and system issues that inhibit the provision of palliative care and end-of life care in these settings.

Issues and Barriers for Palliative Care delivery in RACF Significant death rate within 6-12 months of admission There has been an expectation it would take several weeks, or even months, to adjust to the new life situation, and losses, accompanying a move into RACF. For many residents there is now:   

less time to adjust emotionally as a resident less time for staff to get to know the resident essentially these residents are there as ‘patients’ and the expectations of care in RACF’s for this slowly deteriorating group has evolved to resemble hospice care.

Staff are in turn exposed to frequent deaths, with variable support from colleagues and management. Issues of geographic dislocation   

long standing GP may not be able to continue difficulty locating a new GP possible fracture of other therapeutic and social relationships

Failure of the Aged Care Funding Instrument and related systems to recognise palliative care as relevant to chronic life-limiting illnesses (including dementia) The National Palliative Care Strategy (2010) clearly acknowledges dementia as within the scope of people requiring palliative care. The preponderance of cancer diagnoses within specialist palliative care, historically and currently, may lead to failure to recognise that other chronic illnesses are appropriate for palliative care. Role of Advance Care Directives  

Unclear authority of non-binding Advance Care Plans, Lack of familiarity with new legislation and legally binding Advance Care Directives

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Limitations of Ageing in Place  

Ageing in Place carries limitations re narcotic management and nursing issues as care needs increase Ageing in Place may not easily translate to ‘Dying in Place’.

Issues for families and recognition of approaching death    

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Uncertainty of relevance of clinical signs in a slow deterioration, and closeness of connection may make it difficult to acknowledge Insufficient preparation of families for approaching death. Insufficient experience in having difficult conversations - Lack of time, skills or confidence in staff to undertake end–of-life conversations with family Recognition of the importance of the relationship with relatives, and good communication particularly as death approaches o Difficulty for staff to find time to support families o Recognising the importance of team work and a unified approach between staff and GP o Undermining of the relationship with relatives by differing staff views Need for flexibility- accommodating relatives to stay when a loved one is dying Limited time to provide bereavement support for residents and their families and few options for access to bereavement support outside of the RACF environment

Importance of skilled staff within RACF 

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Nursing capacity with expertise is a major issue -it is not uncommon to have a lack of experience in senior staff as well as lack of continuity. Conversely, experienced competent nurses are the mainstay of good palliative care, supporting the patient and family, supporting and guiding other staff members, and able to liaise effectively with doctors. Nursing staff numbers are problematic with often overwhelmingly inadequate ratios with one RN to over 100 patients, many of whom have complex needs. Deficiencies in support staff, including skills, language and cultural issues around death and dying. Limitations on access to multi-disciplinary care The burden of impractical paperwork/bureaucracy for staff The need for a GP with confidence in preemptive prescribing, who understands palliative care, and who will work with Aged Care nurses and caring staff.

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Issues for GPs     

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Time to carry out visits at short notice may be problematic Requirement to visit more frequently due to rapid changes or as a resident deteriorates Possible lack of confidence in anticipatory prescribing – may include GP knowledge of palliative care but also confidence in staff interpretation of such orders GPs unable to give medication orders over the phone due to nursing capacity Access for GP to specialist palliative care advice, including medical specialists o RACF may be a lower priority area for specialist palliative care support , who may not recognise people in RACF as community palliative care patients. o GPs in turn may be reluctant to call for specialist support o Absence of an emergency specialist palliative care response for new referrals out of hours. Uncertain role of Extended Care Paramedics (ECP) o ECPs may fail to appreciate what procedures can be supported in an RACF eg maintaining an I/V infusion Lack of continuity with use of ECP or locums

Medication issues  

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No Adelaide or state-wide system of holding relevant palliative care medications in local community pharmacies (lack of co-ordination and cooperation) RACF imprest system limited o Some medications should be available immediately o Systems need to be developed for rapid access to other medications eg within 4 hours Staffing levels do not support easy and flexible delivery of Schedule 8 medications eg breakthroughs Limited access to medications via Specialist Palliative care team

Access to equipment 

Appropriate equipment may not always be readily available

Additional issues for care at home Many of the issues identified above are also relevant for care at home: Access to medications  

Need for community pharmacies to be able to supply in a timely fashion Palliative care emergency medications can be left in the home and family taught to use them.

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

Access to some medications may require specialist palliative care involvement

Nursing access and co-ordination of care 

Access to the multi-disciplinary team if required

GP ability to access equipment Domiciliary Care palliative care services are accessed via specialist palliative care services Availability and support for informal carers Access to respite care Lack of flexibility between packaged care and palliative care in the aged care system

Conclusion In 2011, the Productivity Commission concluded that palliative and end-of-life care needs of older Australians are not being adequately met under the current arrangements. Their report concluded that a greater role by residential and community care providers in delivering these services will provide more appropriate care and be less expensive than services delivered in a hospital. To this end the Productivity Commission recommended residential and community care providers receive appropriate payments for delivering palliative and end-of-life care. PCSA echoes this call for appropriate funding, but further, that all sectors, including specialist palliative care, work together to recognise and overcome some of the system-based obstacles to deliver better care.

Resources: Productivity Commission 2011, Caring for Older Australians: Overview, Report No. 53, Final Inquiry Report, Canberra National Aged Care Alliance: Aged Care Reform series – Palliative Care, February 2012 Administrative Appeals Tribunal of Australia - Southern Cross Care (Tas) Inc and Secretary, Department of Health and Ageing [2014] AATA 623 (2 September 2014) Australian Institute of Health and Welfare, Residential aged care in Australia 2010–11: A statistical overview, September 2012

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Australian Government Australian Aged Care Quality Agency Results and Processes Guide, June 2014

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