Introduction
Advocacy is the promotion and protection of the wellbeing and interests of a person or a group of people by ensuring that they are aware of available options and have access to information to allow informed consent in decision-making. In the case of end-of-life care, this may be ensuring a person’s wishes are upheld.
A review into aged care advocacy services in Australia noted that variations exist in interpretations of the nature of advocacy work among aged care service providers, peak bodies, and even some services that report undertaking advocacy. [1]
Quality Statement
Overall, there is a paucity of research on advocacy for older adults receiving palliative care. The two literature reviews sourced for this summary [2,3] are of low quality and narrow in the research focus, while the review of advocacy services [1], cited for context, is of low applicability to palliative care. Other sources are included to provide context to this topic. [4-11]
Evidence Synthesis
While advocacy is present at an individual, community and systemic level, the literature discussing advocacy in a palliative care setting is scant across all domains. [1]
The regulatory framework that applies to aged care safety and quality in Australia includes advocacy and community visitors. [4] The Charter of Aged Care Rights, applicable to all aged care services, also includes the right for each older person receiving services to have a person of their choice, including an aged care advocate, to support them or speak on their behalf. [5,6]
At a community level, in Australia, older people and/or family members requesting assistance with advocacy may be referred to the National Aged Care Advocacy Program (NACAP). [8] NACAP services are implemented Australia-wide by the Older Persons Advocacy Network (OPAN). [7,8]
However, the Interim Report of the Royal Commission into Aged Care Quality and Safety (2019) notes the need for improved advocacy services for older people with families and careworkers often having to take on this role. [9,10]
The one literature review by Reed [2] focuses on the role of generalist community nurses in a rural setting (commonly called district nurses or DNs). The thirty-four studies within this review note that district nurses are ideally placed to act as advocates for people in their care and equally they are happy to be in this role when adequately supported. However, a lack of resources, relational burden and role medicalisation are all barriers to effective practice and may impact on self-advocacy and self-care as well as efficacious advocacy for the people in their care.
The same authors developed a practice model which describes how Australian rural DNs use their specialised generalist role to advocate for person-centred goals in a way that meets healthcare policy objectives. [11] Attributes of the model include respect for others and the ability to recognise vulnerability in others, the willingness to invest oneself in person-centred care, having community connections, and emotional intelligence. This conceptual model requires further validation. [11]
A review of Commonwealth Government aged care advocacy services (2015), is included as a major evaluation review even though it has little applicability to palliative care. [1] This comprehensive review mentions only once palliative care or end-of-life in mentioning an infrequent role of aged care advocacy services in assisting Aboriginal people to return to country at end of life. [1]
This review notes the scarcity of research with a specific focus on advocacy in the aged care sector. Much of the research relates to systemic advocacy, or public policy advocacy, although most commonly, advocacy refers to a person speaking up for themself or on behalf of someone else. [1] Education and information sessions on consumer rights are integral elements of advocacy and the review noted that these often result in consumers seeking advocacy assistance. [1] The review notes the importance of individual advocacy being linked with systemic advocacy processes in order to contribute to improvements in the aged care system.
Many forms of advocacy are described in the literature and a key finding of this review is the diversity of interpretations of the nature of advocacy work among aged care service providers, peak bodies, and even some services that report undertaking advocacy. [1] It also cautions that aged care advocacy should ideally be provided independently from aged care services, government and faith-based organisations to maximise acceptability and reduce the possibility of perceived/real conflicts of interest.
The focus of current changes to the aged care system is centred on embedding greater choice, control and flexibility. Consumers will increasingly be viewed as active partners throughout their aged care experience, and with the implementation of Consumer Directed Care (CDC) services, older Australians and their family and carers will be asked to exercise individual responsibility in making decisions about care. The review recommends that given this environment and the expansion of community-based aged care, appropriate funding should be allocated to support people who are vulnerable or ‘hard to reach’ (including rural/remote) and those with specific/special or complex needs. [1]
People with dementia
Traditionally, carers have advocated for people living with dementia. Recently people living with dementia have begun to advocate for themselves to present accounts of their lived experience so that their experience can be better understood and their personal stories have a persuasive impact. [3] These advocates are motivated by both a desire to challenge stigma, generalisations and assumptions about dementia, and to make a continued contribution to society. [3] The emerging research on self-advocacy and people living with dementia highlights four themes: threats, fighting back, evolving identities, and making a difference. The threat of stigma associated with a diagnosis dominates and is of itself a motivation for self-advocacy. [3] In becoming part of a self-advocacy movement the benefits for people with dementia include regaining their voice and membership of social networks with a shared experience. However, it should be noted that participation is not universally positive and can be associated with negative impacts including fatigue from by the effort (rewarded or unrewarded) or burdened by the perceptions of the expectations of others. [3]
Evidence Gaps
There is a paucity of research on advocacy for older adults receiving palliative care. Although the potential for vulnerability is recognised (advanced age; advanced illness; comorbidity including cognitive impairment or other ‘capacity’ issues; confusion surrounding aged care reforms, financial concerns…), [1] there is a need for clarity about the problems that require advocacy for older Australians receiving palliative care.
The Review of Commonwealth Aged Care Advocacy Services Final Report (2015) reported that advocacy for people living with dementia had often been delivered in a reactive manner, and that for this group particularly, proactive and preventative advocacy is key. [1] Despite this, there is little evidence for the involvement of people living with dementia in advocacy. [3]
Page updated 26 May 2021