The Care Journey

This section provides information for the Health Care Workforce on providing palliative care with and for Aboriginal and Torres Strait Islander people.

In order to effectively meet the needs of Aboriginal and Torres Strait Islander patients requiring palliative care, health professionals need both clinical and cultural knowledge and skills to engage with Aboriginal and Torres Strait Islander patients and their family and community and provide the best possible end-of-life care journey for all involved.

Sharing stories is a valuable way to help show us how each person’s journey to the end is different. We need to understand and acknowledge the role of the Aboriginal and Torres Strait Islander person’s culture, family, and community in this journey. At this time many Aboriginal and Torres Strait Islander people provide care for their loved one requiring palliative care, and they learn and share the stories of that individual during this time of sadness.

Some stories demonstrating the diversity of palliative care journeys for Aboriginal and Torres Strait Islander people are provided below.

• I had help from palliative nurses… and when it got to the end he just couldn’t get out of bed. But they were lovely because they gave me a bed in the hospital in the room with him - right to the end, yeah

  A carer’s story.
  Source: Kelly J, Dwyer J, Mackean T, Willis E, O’Donnell K, Battersby M, et al. Managing two worlds together: Study 3 - The experiences of patients and their carers (902kb pdf). Melbourne: The Lowitja Institute; 2011. Page 22.

• The doctor said that some of her organs were shutting down and that she had only a few months to live. Kylie visited her and asked what she wanted to do, who she wanted with her and where she wished to be when she died. The woman wanted to go home and say goodbye to family and friends. Arrangements were made and re-made as she became increasingly unwell, but eventually she returned home in time to reconnect with family and share stories before she died. 

  Clinical Services Coordinator recalls coordinating an End-of-life Journey for a renal patient.
  Source: Kelly J, Herman K, Martin G, Wilden C, East T, Russell C, et al. Managing two worlds together. Stage 3: Improving Aboriginal patient journeys - Renal case studies (2.98MB pdf). Melbourne: The Lowitja Institute; 2015. Page 5.

• Mary, a 35 year old woman with advanced breast cancer was referred to the Palliative Care service based at the Royal Darwin Hospital.  ... Mary was offered further chemotherapy treatment but she stated that she wanted to discuss the issues with her family at home. It was important that the family hear the story themselves. A teleconference was arranged ... During the teleconference Mary’s prognosis, disease progress and treatment options were carefully explained to the family. It was stated that the treatment would not eliminate the disease but would possibly slow down the progress. Mary and her family decided that she did not want to have any more chemotherapy treatment. She said that she was homesick and wanted to return home to be with her family. It was agreed that arrangements be made for Mary to travel home as soon as possible. ...The family stated that it was crucial that Mary ‘finish up’ on her country with family present. It was agreed that when Mary deteriorated she would be managed by the clinic nurses and visiting doctor on the community ... the Palliative Care after hours on call service could be used by the clinic staff and family for advice and reassurance. ... Mary made it home and passed away peacefully surrounded by family and community members 2 weeks later.
  

  Clinical Nurse Manager of Hospice and Palliative Care Case Story of 'Mary'.
  Source:  Murphy S. Case Story. CareSearch Nurses Hub News. (193kb pdf). November 2016.

• Ms. L made a decision to withdraw from haemodialysis knowing full well the consequences and made the decision to die at the (Residential Aged Care) facility. ... Throughout this Ms. L was supported by her very good friend, who was able to attend each day with the support of the social workers at the local hospital ... Specific post-death requirements and support were discussed with Ms. L to ensure cultural obligations were fulfilled ... Ms. L died three days after making this decision ... Ms. L died in a manner in which enabled her to complete her ‘story’.

  Residential Aged Care Nurse recalls Ms L’s story.
  Source:  McIntyre L. Ms. L’s Story:  An Aboriginal and Torres Strait Islander woman’s end of life journey in a Residential Aged Care facility (680kb pdf).  Poster Presentation 12th Australian Palliative Care Conference, 3-6 September 2013; Canberra: Palliative Care Australia; 2013. Page 51.

• Dad knew what he wanted. He didn’t want to die at home and always planned to go hospital for the final part of his journey. We said to him, “Dad, when you are ready to go, you go”. He made his own decisions, and was always an independent man.

  A Daughter's story of her father's journey. From 'Making his own decisions'.
  Source: Illawarra Shoalhaven Local Health District: Shoalhaven Palliative Care and Aboriginal Health Building Relationships Committee. In our care into your hands: Aboriginal stories about approaching the end of life (762kb pdf). Illawarra Shoalhaven: Illawarra Shoalhaven Local Health District, NSW Government; 2015. Page 12.

• All the family came to the hospital. They ended up giving him a private room to cope with the visitors. Hospital staff need to understand that it’s customary for Aboriginal families to be with a loved one who is dying as a sign of respect; it’s a part of our tradition; an expectation. With ten kids in the family, and extended family, there were always a lot of people at the hospital, we made sure there was never any more than about six people in the room at any one time.

  A Daughter's story of her father's journey. From 'Making his own decisions'.
  Source: Illawarra Shoalhaven Local Health District: Shoalhaven Palliative Care and Aboriginal Health Building Relationships Committee. In our care into your hands: Aboriginal stories about approaching the end of life (762kb pdf). Illawarra Shoalhaven: Illawarra Shoalhaven Local Health District, NSW Government; 2015. Page 12.

• But it came back again within three weeks. The next scan showed that that it had come back more vicious than it was before and had moved into my lungs. That was about a month ago. They said they can’t give me a time for anything. It’s not like a light switch they can turn on and off, but I was told to get everything organised – things like my funeral, power of attorney, get a list of people who they have to let know once I do go.

  A patient's story. From 'Gone Fishing'.
  Source: Illawarra Shoalhaven Local Health District: Shoalhaven Palliative Care and Aboriginal Health Building Relationships Committee. In our care into your hands: Aboriginal stories about approaching the end of life (762kb pdf). Illawarra Shoalhaven: Illawarra Shoalhaven Local Health District, NSW Government; 2015. Page 8.

• It's important for our elders to be cared for where their cultural needs are addressed ... We make sure they can get outside into the garden, that family can visit whenever they like and that the stories can be told.

  Aboriginal Manager of aged care facility.
  Source: National Palliative Care Program. Providing culturally appropriate palliative care to Aboriginal and Torres Strait Islander Peoples: Resource.(1.51MB pdf). Canberra: Australian Government Department of Health and Ageing, Commonwealth of Australia; 2004. Page 130. Prepared for the Australian Government by Mungabareena Aboriginal Cooperation, Wodonga Institute of TAFE, and Mercy Health Service Albury (Palliative Care).