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Advocacy - Synthesis

Introduction

Literature retrieved from searches on the topic of advocacy in palliative care, was limited to two papers of interest, a major evaluation review, [1] and a scoping study with a narrow focus in the palliative care context with limited generalisability and no reference to the aged care context. [2]
 

Quality Statement

Overall there is a paucity of research on advocacy for older adults receiving palliative care. The one literature review sourced for this summary is of low quality and narrow in the research focus, while the review of advocacy services, cited for context, is of low applicability to palliative care.
 

Evidence Synthesis

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. 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. Advocacy seeks to support and enable people, and in a healthcare context should span all aspects of care, within all settings where older adults are receiving palliative care services, and within the scope of practice for all members of a palliative care team. [1]


The one literature review by Reed [2] focuses on the role of generalist community nurses in a rural setting (commonly called district nurses). 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.


A recent 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 himself or herself 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]

 

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.


Page udpated 23 May 2017

  • References

  1. Australian Government Department of Social Services, Australian Healthcare Associates (AHA). Review of Commonwealth Aged Care Advocacy Services: Final report. Melbourne: AHA; 2015 Dec.
  2. Reed FM, Fitzgerald L, Bish MR. District nurse advocacy for choice to live and die at home in rural Australia: a scoping study. Nurs Ethics. 2015 Jun;22(4):479-92. Epub 2014 Jun 29.