Person-Centred Care

Person-Centred Care is professional care that recognises uniqueness and individuality, and respects the choices, dignity, and the rights of the person. Inherent in respect for the rights of a person is respect for their cultural rights. A key component of holistic person-centred palliative care is understanding that people and their culture are inextricably linked, so acknowledging and being respectful of cultural differences is required when providing palliative care. Carers need to recognise and be sensitive to cultural differences that may exist between themselves and Aboriginal and Torres Strait Islander patients, especially during the difficult time at the end of life. [1]

Health care professionals also need to recognise that Aboriginal and Torres Strait Islander peoples are a diverse group of peoples who have diverse cultural beliefs and practices when it comes to the end of life. What may be important for some patients and their kin may not be important for others. Determining what is important for each palliative care patient requires open, culturally-responsive and respectful conversations between health professionals, patients, and their family about their concerns, needs, beliefs, and choices. With open communication, a trusting relationship can be developed and honouring and respecting the wishes of Aboriginal and Torres Strait islander patients and their family is possible. [1-3]

You can read more about effective communication with Aboriginal and Torres Strait islander patients and their family in the 'Talking Together' section of Aboriginal and Torres Strait Islander Care.

Watch a video on Aboriginal Palliative Care produced by Ballarat and District Division of General Practice in 2011.

Many of the issues demonstrating the need for person-centred palliative care are illustrated in a poem by Fred Miegel, titled 'No Straps to Secure Her'.

Person-Centred Issues to Consider

• ‘Family comes first’ is an important principle for many Aboriginal and Torres Strait Islander people. The extended family is likely to be extremely important, where there may be an important relationship-based kinship system and clear gender roles (‘Men’s Business’ and ‘Women’s Business’). The implications of this are:
  • There may be a family spokesperson that isn’t the patient, so you need to check with the individual and their family who is the most appropriate person for you to talk to about their care. You also need to check what is appropriate to talk about.
  • Some men will prefer to be cared for by men, and women by women, so you may need to be ready to accommodate that preference.
• Consider whether the usual ways you might relate to people (eg, eye contact and holding a gaze, firm hand-shake) is causing them to feel unsafe or uncomfortable.
• Use plain English communications, check that information has been understood, and assess the need for an interpreter.
• For each individual patient, identify their specific cultural and spiritual needs, ceremonies or practices, in the lead up to death and post-death.
• Direct statements about death and dying are not spoken aloud in many Aboriginal and Torres Strait Islander communities. Terms that might be used instead include ‘sorry business’, ‘finishing up’, and ‘passing on’.
• Aboriginal and Torres Strait Islander peoples may hold strong spiritual and cultural beliefs about the cause of serious illness. These beliefs may conflict with medical explanations. Respect any wishes for a traditional healer to visit.
• People differ in the way pain is experienced and expressed, including differences in pain thresholds and levels of analgesic effect. Some Aboriginal and Torres Strait Islander people may be reserved and unobtrusive when in pain and may not openly complain. They may be embarrassed, or being awake and aware may be more important to the patient than dulling the pain they are experiencing. Understandings of pain management medications, how they work, and their side effects, may vary also.

• I loaded an old lady into a troopy today
  A mattress on its floor, not legal I'm sure
  A four hour trip back to her bit of land...more

  'No straps to secure her' by Fred Miegel
  Source:  Miegel F. No straps to secure her (3.28MB pdf). Partyline: Magazine of the National Rural Health Alliance. 2011;41(May): Page 31.

• During the teleconference a plan of care was discussed. 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...more (193kb pdf)

  Simon Murphy's Case Story 'Mary'.
  Source:  Murphy S. Case Story 'Mary' (193kb pdf). CareSearch Nurses Hub News. November 2016.

• A lady at the terminal stage of cancer had progressed to a semi-conscious state whilst waiting for her family to arrive from the community 900km away… When the family arrived they were upset because of the lady’s status and because she couldn’t communicate with them… We discussed getting the dosage of morphine reduced to see if that would allow acknowledged communication between the family and the person with pain still being controlled at an acceptable level for the person. I informed the treating doctor of the family's decision and the dosage was reduced. The person sat up, ate a small meal, was able to speak and share stories with family and died the next day.

  Story from hospital based Aboriginal Health Worker, from 'Providing culturally appropriate palliative care resource kit'.
  Source: National Palliative Care Program. Providing culturally appropriate palliative care to Aboriginal and Torres Strait Islander Peoples: A Facilitator's Guide to the Resource Kit.(577kb 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).