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Advocacy

Key Messages

  • Advocacy aims to support and promote a person’s rights and interests. A person may advocate for himself or for herself or an advocate may undertake this. [1]
  • Much of the literature on advocacy comes from the disability sector as there is very little in relation to aged care or palliative care. [1]
  • A national framework for a more clear definition and delivery of advocacy services in all aged care settings, may be warranted to offer more consistency in practice and relationship with consumer-directed care. [1]
  • The core aim of aged care advocacy is to support those who are vulnerable or ‘hard to reach’ or who have complex needs. Funding will need to recognise the resources required to serve these groups satisfactorily. [1]
  • Education and information sessions on consumer rights can often result in consumers seeking advocacy assistance. [1]

Background

Advocacy in all its forms seeks to ensure that people, particularly those who are vulnerable, are able to have their voice heard on issues that are important to them, have their rights defended and protected, and have their views and wishes genuinely considered when decisions are being made about their lives. Advocacy is a process of supporting and enabling people to express their opinions and concerns, to access information and services, to defend and promote their rights and responsibilities, and to explore choices and options. [1,2]

A recent review into aged care advocacy services in Australia (2015), 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]

The evidence summary discusses the issues around advocacy for older adults receiving palliative care.

 

Evidence Summary

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.

At a community level, in Australia, under the National Aged Care Advocacy Program (NACAP), nine state-based advocacy organisations are in place for older Australians receiving Australian-Government-subsidised Home Care Packages and residential aged care services. These organisations offer confidential and independent advice and support to all older adults but services are advisory in nature with none specific to palliative care. A review of these services was conducted in 2015, [1] which proposed that a national framework for delivery of advocacy services would be merited. However, specific advice for the implementation of advocacy in a palliative context was limited to only a mention that Aboriginal adults should be assisted in returning to the country at end-of-life. [1]

 

Quality Statement

Overall there is a paucity of research for patient advocacy for older adults receiving care in a palliative care setting. The one literature review sourced for this summary [2] is 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.

 

Page created 01 May 2017
 

  • References

  • About PubMed Search

  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.

Advocacy for patients, their unpaid carers, and their family

Definition

Patient Advocacy: Promotion and protection of the rights of patients, frequently through a legal process. (MeSH)
Consumer Advocacy: The promotion and support of consumers' rights and interests. (MeSH)

Searches

Final search
"Patient Advocacy"[mh] OR "Consumer Advocacy"[mh] OR Patient advocacy [tiab] OR client advocacy[tiab] OR consumer advocacy[tiab] OR ombudsmen[tiab] OR patient representative*[tiab] OR family representative*[tiab] OR patient advocate*[tiab] OR family advocate*[tiab] OR healthcare advocate*[tiab]