Creating a Caring Environment
In addition to considerations about person-centred care, steps to provide a caring environment for Aboriginal and Torres Strait Islander people receiving palliative care might include those listed below. Again, the need for these will vary for Aboriginal and Torres Strait Islander individuals, so it is important to discuss their specific cultural needs as early as possible.
Suggestions for a Caring Environment
- Acknowledge the importance of kinship for many Aboriginal and Torres Strait Islander patients. This includes accommodating and supporting families who may request someone be allowed to stay with the patient at all times. It is especially important that arrangements can be made for the next of kin to stay with the patient while they are in hospital if the situation is critical and/or if the next of kin is the only connection to country or culture that the patient has while there. Note that who is considered next of kin may vary between families. Where possible Aboriginal and Torres Strait Islander patients should not pass away alone because this can be considered important for their passage into the afterlife (spirit world). You may also need to accommodate cultural gatherings that necessitate large numbers of visitors (eg, moving the patient to a larger room near the ward entrance). [1,3,7-9]
- Recognise the deep relationship of Aboriginal and Torres Strait Islander people to their country, and that place of death can be a core consideration in end-of-life care for some Aboriginal and Torres Strait Islander people. [5,10] Some patients may prioritise their spiritual and cultural needs regarding place of death over their physical distress. [10] While many Aboriginal people have been relocated and no longer live on traditional country, this does not diminish their cultural and spiritual connections to country. The cultural beliefs that that all living things have a spirit, and that life is a continuum cycling through Life-Death-Life, is common amongst Aboriginal and Torres Strait Islander peoples. At the time of death, the spirit leaves the body to return to the Ancestors’ country. For this reason, Aboriginal and Torres Strait Islander people receiving palliative care may desire to return home to country to pass away (or 'Finish up'). [10-12] Assisting the family to help this happen is important. Initiating advance care conversations with patients experiencing life-limiting illness may facilitate these plans. [11,12] After death, the family and kin are responsible for ensuring the safe passage of the spirit to the ancestors. [1,7,10]
- Some Aboriginal and Torres Strait Islander patients may benefit from having access to an outside area. There may also be a preference for a bed that allows a consistent view of the outside. This supports spiritual beliefs about the dying trajectory. [8]
- Access to traditional healers may be important for a patient's health and peace of mind. They can play a valuable role in offering spiritual and emotional support to patients and their families. Supporting and facilitating access to traditional healers when requested assists in meeting the cultural and spiritual needs of patients. [6,8,13] It is also valuable for health professionals to know if their patients are taking traditional bush medicine because there may be potential interactions and side effects involved in using both traditional and western medicines. [13]
- Make provisions in the care environment for any desired cultural/spiritual rituals and bereavement practices. This might include rituals for the care of the deceased, or smoking ceremonies. [2,4,8] The cultural purpose of smoking ceremonies is to help release the spirit for the journey to country. [1,7-8]
- For some Aboriginal and Torres Strait Islander people, the use of the terms 'death' or 'dying' may cause discomfort or offence. The terms 'finishing up' or 'passing-on' may be more appropriate references. [1,10] In some Aboriginal and Torres Strait Islander communities, the name of the deceased is not mentioned for a long period of time. This is to ensure that the spirit is not held back or recalled to this world. Clarify whether or not you can use the name of the deceased person, and identify what ‘name’ is suitable. [7-8]
- The involvement of Aboriginal and Torres Strait Islander people who are part of the Australian health workforce can be an invaluable resource in both hospital and community settings. Creating partnerships with Aboriginal health workers, health practitioners and liaison officers can help ensure culturally relevant requirements are addressed and preferences of the patient and family are considered. [5,7,10] Liaison with Aboriginal community health organisations and medical services may also be very worthwhile, especially where discharge is considered. The role of primary health care can be particularly important in remote areas, and if a patient chooses to go home to country to 'finish up'. [3,10]
And REMEMBER.....
As a matter of principle, an Aboriginal or Torres Strait Islander person should be treated as an individual with individual needs, and not stereotyped. Remember that all Aboriginal and Torres Strait Islander people are not the same and what may be appropriate for one may not be appropriate or relevant for another. [9,11]