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Aboriginal Stories About Approaching the End of Life

Illawarra Shoalhaven Local Health District
Project Added:
7 October 2016
Last updated:
24 October 2016

Aboriginal Stories About Approaching the End of Life

Summary

This booklet sensitively captures end of life stories from six Aboriginal patients and carers from the Shoalhaven region. The stories share information about palliative care services, planning for end of life and how talking with loved ones about their preferences helped with healing and decision-making.

Aim

To allow the voices of Aboriginal people to be heard, regarding what is important to them and their loved ones as they approach the end of life.

Booklet cover shows artwork

Benefits

  • Prompts community-wide discussions about dying, the role of palliative care, advance care planning and dealing with grief.
  • Promotes understanding about what healthcare and community services are available to Aboriginal people.
  • Educates service providers about delivering culturally-appropriate care to Aboriginal people at end of life.
  • Enhances respect and trust by empowering Aboriginal people and allowing their voices to be heard.
  • Improves the reputation and standing of ISLHD hospitals within the Aboriginal community.
  • Honours the power of storytelling in Aboriginal culture and allows service providers to convey meaning beyond a list of services.
  • Improves collaboration among service providers and Aboriginal communities.

Background

There are approximately 4,500 Aboriginal people in the Shoalhaven region of NSW, which is around 4.7% of the population. However, despite the presence of a strong, active Aboriginal community, very few Aboriginal people access specialist palliative care. Prior to the project, there were very few referrals to inpatient or community-based palliative care services for symptom management or terminal care. There was also a lack of information that was appropriate to the needs of Aboriginal people about end of life care. It was anticipated that Aboriginal people may be more willing to engage with palliative care by hearing local stories of when and how others have used the service.

Implementation

  • This project came from activities of the Shoalhaven Aboriginal Palliative Care Healthy Partnerships Committee, formed in 2013, comprising members from ISLHD, Grand Pacific Health and various Aboriginal health, aged care and welfare organisations.
  • A ‘Yarn-Up Day’ on advance care planning was held in 2014, to provide an opportunity for Aboriginal community members to share their insights on end-of-life care. It showed that Aboriginal people were hungry for information about end-of-life care and wanted a way to acknowledge the grief and loss they experienced.
  • The Committee developed a patient story booklet, based on the ‘Nooka Murrook’ booklet developed by Hunter New England Local Health District. It involved engaging Aboriginal Health Workers to approach elders and clients to tell their stories. All contributors spoke openly about what was important to them and what they thought others might need to know as they or their loved one approached the end of life.
  • Consent forms were developed to ensure contributors had full ownership of their story.
  • Staff with media training worked closely with Aboriginal Health Workers and storytellers, to capture and edit the stories for clarity, ensuring they were interpreted the way the storyteller intended, without distressing readers or placing the organisation at risk.
  • Local Aboriginal artwork was donated to David Berry Hospital’s Palliative Care Unit and Aboriginal Chronic Care team and used to acknowledge the power of storytelling in end of life care.
  • A second ‘Yarn-Up’ was held in 2015 on the topic of grief and loss, which coincided with the launch of the ‘In Our Care, Into Your Hands: Aboriginal stories about approaching the end of life’ booklet.

Project status

Sustained - the initiative has been implemented and is sustained in standard business.

Key dates

  • Planning, interviewing and approvals of stories: November 2014 – April 2015
  • Booklet printing: May 2015 (500 copies), July 2015 (500 copies), May 2016 (1,000 copies)
  • Booklet launch: 28 May 2015 (coinciding with Grief and Loss Yarn Up)
  • Palliative Care and Reconciliation Week: May 2016

Implementation sites

The ‘In Our Care, Into Your Hands’ booklet is available via service providers across ISLHD , including general practitioners, hospitals, palliative care services, Aboriginal Health Workers, Aboriginal Aged Care and Aboriginal Chronic Care services.

Partnerships

  • ISLHD Palliative Care
  • ISLHD Aged Care
  • ISLHD Aboriginal Health
  • Grand Pacific Health
  • Waminda South Coast Women’s Health and Welfare Aboriginal Corporation
  • Illaroo Aboriginal Aged Care
  • South Coast Aboriginal Medical Service
  • NSW Family and Community Services

Results

  • The booklet has been reprinted three times, with 2000 copies distributed to community members through general practitioners, hospitals, palliative care services, Aboriginal Health Workers, Aboriginal Aged Care and Aboriginal Chronic Care services across the region.
  • Feedback from community health services has been very positive, particularly healthcare staff who can direct carers to a resource which honours Aboriginal people’s experiences.
  • The booklet and stories became the focus for a shared Palliative Care Week and Reconciliation Day event at David Berry Hospital in 2016.
  • One contributor to the booklet donated a didgeridoo to the Palliative Care Unit from her father’s estate, as thanks for the support offered by the project.
  • The booklet has now been included in national, state and local library collections as a source of historically significant cultural stories.

Lessons learnt

  • It’s important to gain consent from the storyteller for the initial interview, then another signed consent for the use of the edited written version of the story, to ensure complete transparency and ownership of the story.
  • Sharing stories was a positive experience for the Aboriginal person and their family. There was strong community ownership of the project and enhanced collaboration and trust between services.
  • It’s important to ensure any aspects of the story that may be perceived as negative are not harmful or misrepresented.
  • There was a lack of formal evaluation and in retrospect, seeking comments through focus groups would have been beneficial to the project.

Resources

Contact

Kay Cope
Palliative Care Clinical Services Manager
Illawarra Shoalhaven Local Health District
Phone: 0421 097 810
kay.cope@health.nsw.gov.au

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