Introduction
Policy directions in Australia recognise that older people will want to age ‘in place’ and stay in their home and communities as long as possible and, if possible, die in the place they regard as home. The AIHW report on the use of aged care services before death [1] outlined people’s use of aged care services in the 8 years before they died. Three-quarters of this group used an aged care service during the 12 months before they died. While some used aged care services only in the year before death, others had accessed services over several years. Aged care packages are therefore a key instrument with regard to enabling end-of-life care provision. This approach needs to be supported by a high-quality and well-prepared health workforce able to support older Australians reaching the end of their life in residential aged care and in the community.
The Australian aged care workforce is diverse comprising generalist health professionals including GPs, allied health professionals and aged care and community nurses as well as general practice nurses. It is a significant workforce with 366,027 workers of which 240,317 have direct care roles. [2] The size of the residential aged care workforce being estimated at 235,764 workers of which 153,854 have direct care roles: 386 Nurse Practitioners (NP), 22,455 Registered Nurses (RN), 15,697 Enrolled Nurses (EN) and 108,126 Personal Care Attendants (PCA), 2,210 Allied Health Professionals (AHP) and 4,979 Allied Health Assistants (AHA). [2] The size of the home care and home support aged care workforce is estimated at 130,263 of which 86,463 have direct care roles: 53 Nurse Practitioners, 6,969 RNs, 1,888 ENs, and 72,495 Community Care Workers, 4,062 Allied Health Professionals and 995 Allied Health Assistants. [2] AHPRA data reports that in 2018-19, there were 26,772 registered medical practitioners with general practice as listed speciality (GPs). [3] Residential aged care workers viewed dementia training and palliative care as priority areas for future training. [2]
Personal care attendants are also known as careworkers, nursing assistants and health care assistants. [4, 5]
Quality Statement
This synthesis utilised evidence from eighteen systematic reviews. [4,6-22] Four dealt specifically with topics relating to palliative care in aged care [4,6-8] while the rest were either aged care only [9-12] or palliative care only. [13-20] or advance care planning [21] or the general health workforce. [22] The overall quality of the systematic review evidence was good with approach searches and methods for extraction and analysis. No meta-analyses were completed.
Evidence Synthesis
Workforce considerations
Enrolled nurses and careworkers provide most direct care to older people. [2,4,5,17] These healthcare assistants (HCA) provide supportive services and personal assistance to disabled, elderly and/or ill (acute or chronic) individuals requiring either short-term aide or long-term support. The vulnerability of their employment structures has been recognised as having the need for delineation of competencies and scope of practice to support standardisation of educational programs. [22]
However, despite the widespread use of careworkers, little is known about the roles they play in palliative and end-of-life care in the community. Their work is located at the intersection between professional and informal care. A recent review highlighted five core domains where care workers contributed to this care of older people: personal care, emotional and social support, domestic support, respite care for family carers and collaborating with professional and family carers. A substantial proportion had no nationally recognised qualification, no training on appointment or felt inadequately prepared for their job. Role boundaries could also be not clearly defined. [17]
An international scoping review found that careworkers have broadly similar roles across countries and health systems. [5] However, it also found that careworkers feel confident in physical care provision but less comfortable with emotional support, and often feel marginalised and undervalued within the care team. End-of-life educational needs of careworkers were identified as: the process of dying and palliative care, communication skills, and clinical skills and knowledge related to chronic illness. [5]
For careworkers across Australia palliative care training is no longer mandatory. [4]
There are a number of tools available that have been identified to evaluate current palliative care competency among nursing assistants. [4] One of these instruments measured nursing assistants' level of comfort in providing end-of-life care. The six remaining instruments measured palliative care knowledge, palliative care practice, self-efficacy, knowledge and attitudes towards people with advanced dementia, beliefs and attitudes to death, dying, palliative and interdisciplinary care across the aged care workforce. Usefulness of identified tools may be limited by language skill and literacy skills of many workers. However, all of these tools apart from one were originally developed for nurses and other health professionals. [4]
More recently, a three-part tool has been developed to assess careworker palliative care education needs and comprises: the Palliative Approach for Nursing Assistants (PANA)_Knowledge Questionnaire (17 items), the PANA_Skills Questionnaire (13 items) and the PANA_Attitudes Questionnaire (10 items) (155kb pdf). [4] These have been validated for Australian careworkers in residential aged care to assess knowledge, self-perceived skills, and attitudes to delivering palliative care. [4]
Internationally, there is evidence that nurse practitioners provide high-quality healthcare. Given challenges in providing GP resources to aged care facilities, there is increasing scope for nurse practitioners to contribute to the care of older people. Research findings have supported this expanded role and the value of increasing their numbers in aged care in both residential and community settings. There is also evidence that consumers support the nurse practitioner role and would accept care from them. [14]
The role and responsibilities of NPs are not well described despite existing scopes of practice. [23]
Influences on workforce effectiveness
There is a growing body of research that has looked at the relationships between nurse staffing levels in nursing homes and quality of care provided to residents but differences in definitions and descriptions of quality make assessment of findings difficult. Shin’s review found few staffing variables were statistically associated with residents' quality of life (QoL). [9] More Registered Nurse (RN) hours appeared to be associated with better comfort and enjoyment domains, more licensed practical nurses hours with better dignity, and more certified nurse assistant (CNA) hours with better functional competence domains. Spilsbury et al.’s study also found tentative evidence that the total nurse, RN and CNA staffing may positively influence quality of care for residents but noted that little is known about causal mechanisms. [10] More is needed to be understood about how RNs can best manage support staff, to contribute to better use of available nursing home staff skills and improve quality of care. [10]
Quality of life may also be influenced by the characteristics of the care facilities themselves. The data is not strong enough to support conclusions about the association of nursing home characteristics with residents’ QoL however further work on the aspects of quality of life affected by nursing home characteristics and staff arrangements could be valuable. [12]
There is increasing recognition of the importance of staff training and education and their effectiveness as interventions that achieve outcomes for staff and for the people for whom they provide care. Given the aged care workforce characteristics, training interventions that focus not only on knowledge but on organisational support for workers may be critical in improving and sustaining workforce capacity and preparedness. [8,15]
While burn out could also be an issue with the workforce, protective factors identified in palliative care services may be useful in supporting the aged care workforce providing care to older Australians as they approach the end of their life and could be incorporated into training interventions. [20]
In 2018, the Aged Care Workforce Strategy Taskforce published Australia’s Aged Care Workforce Strategy outlining fourteen strategic actions to help guide the workforce of the future and improve the quality of aged care. [24] Some directly address training and recruitment, attraction and retention, and skills mix to build a workforce able to respond to current and future needs. Others are directed at improving the perception of the aged care industry, feedback and quality improvement processes, and strengthening the interface between aged care and primary/acute care. One specific recommendation was to prioritise a review of the current electives for the Certificate III and Certificate IV courses and consider whether any of these electives should be changed to compulsory core units. [24]
Approaches to care
Inter-professional working has been identified as beneficial for caring for older people with complex and multiple needs. There are different approaches that have been identified - case management, collaboration and integrated care teams and they show promise in improving processes of care and outcomes for individuals and for carers. [11]
Effective collaboration is seen as fundamental by many generalist professionals. Five themes were identified in the hospital setting as improving or decreasing effective collaboration between palliative care specialists and hospital staff: model of care (integrated vs linear), professional onus, expertise and trust, skill building versus deskilling and specialist palliative care operations. [16] Collaboration is fostered when specialist palliative care teams practice proactive communication, role negotiation and shared problem-solving and recognise generalists’ expertise.
These themes highlight the importance of respectful relationships.
In dementia care where staff members are confronted with complex needs and situations in managing behavioural issues, case conferences have been investigated as a mechanism to understand difficult situations and as a sign of professional practice. [7] The evidence for effectiveness is weak.
Primary care
When primary care professionals are involved in end-of-life care, people are more likely to die out of the hospital. Thus, the relationship with the PCP may be particularly important in EOL care, because PCPs may help individual establish goals of care and determine treatment preferences. [6] However, for those living and dying in the community, an uncertain and unpredictable illness trajectory, lack of communication between care providers and the confusion about the boundaries of the roles of professional can affect care. [19] Hence continuity and coordination of care as a multiprofessional team and dealing with uncertainty are critical concerns of the health workforce providing care to older Australians. Health care professionals need to acknowledge this uncertainty, share this acknowledgement with patients and carers and develop a joint strategy or care plan to help manage it.
Identification of those with palliative care needs also remains a challenging mix of subjective (clinical knowledge and judgement) and objective elements (tangible clinical signs and events). [25] Four palliative care identification tools for primary care through the literature search, and three others via the survey of key informants were included in a review of identification tools in primary care. [18] Disease-specific features were included in some tools but all common aspects for all the tools were the surprise question, declining weight or functional status, and the use of resources such as having had two or more recent hospital admissions. At the time none of the tools had been validated or widely implemented. A more recent systematic review identified ten screening tools in primary care and found most had been validated but had limited ability to identify palliative care needs in advanced disease. [26] The Supportive and Palliative Care Indicators Tool (SPICT) was one of the tools included and following validation in various settings has been recommended for use in Australian general practice for a general adult population. [25-28] Clinicians should be encouraged to use their clinical experience and one of the existing tools for early identification of patients for palliative care as a first step in improving the quality of life of patients currently living and dying with unmet care needs.
Evidence Gaps
- The role of volunteers in providing palliative care and end-of-life support for older people and their families in different settings is still limited. [13]
- Death Doulas have identified gaps in health and social care provision but how they work within these systems is not understood [29]
- Future research will require national healthcare assistants (HCA) registries or, at minimum, directories. Addressing the need to understand the needs and contributions of those working with specific cultures and groups.
- Research into, and development of, a best model for effective interdisciplinary work are needed for better primary palliative care provision.
- There is little evidence regarding the role of allied health in palliative care and end-of-life care for older people.
- There is a lack of evidence in the service gaps of care coordination and the identification of the triggers for decline and how these affect onset of palliative care and the goals of care. This seems important to as an ever-increasing number of older people with palliative care needs live at home with home-support services.
- How is palliative care in aged care affected by the lack of RNs in service roles or management roles?
- How can regional or stand-alone aged care services be best supported to provide care reflecting specialist or essential palliative care?
Page updated 01 June 2021