Cross cultural issues in the medical management and nursing care of terminally ill Aboriginal people in Central Australia

Abstract

This research documents, for the first time, the experiences of non-Aboriginal primary health workers caring for terminally ill Aboriginal patients in Central Australia. Despite the high mortality amongst Aboriginal Territorians, issues around terminal illness, death and bereavement have been little studied. The area is sensitive in both cultural and human terms. Many clients of the local health care services are Aboriginal people whereas most nurses and doctors are non-Aboriginal. Their clinical interactions are inherently cross cultural and are additionally influenced by several sequelae of Australian colonial history, including socioeconomic and status disparity between participants and entrenched discriminatory attitudes and practices. The study was approached from the perspective of the new public health, informed by the philosophy of contemporary palliative care and aimed to contribute to the development of a culturally safe practice for the care of terminally ill Aboriginal people. Data was collected using a qualitative method of serial interviews with a representative sample of primary health care workers with an Aboriginal clientele. The study found that cultural factors were important determinants of good health care communication, the making of appropriate end-of-life care decisions and the provision of quality case management and bereavement support. Significant cultural issues for achieving a “good death” included recognition of the wish of many Aboriginal people to die on their own country and of the value of the Aboriginal kinship system for enabling care decisions and providing care. To date however, these have had little formal impact on the design or delivery of health care services for terminally ill Aboriginal people in Central Australia. Nurses and doctors interviewed for this study considered Aboriginal patients’ access to quality health care during a terminal illness to be inadequate and inequitable. The difficulties of providing health care in remote areas impacted disproportionately on Aboriginal clients. Their treatment options were limited by their poverty and by institutional policies determining the availability of resources. Cultural and language mis-communication between Aboriginal clients and non-Aboriginal health professionals impaired the process of decision making and the delivery of care. The hegemony of the majority culture and its health care institutions disempowered Aboriginal clients while entrenched discriminatory social attitudes perpetuated inequitable practices. Specific service gaps were identified in the availability of interpreter services, transportation, respite care, domiciliary nursing and bereavement support. The wider care network, including hospitals, nursing homes, multidisciplinary health care providers, and the transport needed for remote clients to access these, was inequitably available and insufficiently accommodating of Aboriginal cultural needs. The existing palliative care services employed no Aboriginal staff. Improving care will therefore require a range of institutional and societal responses, including addressing service gaps, providing practical responses to cultural aspects of service provision, and continuing to work towards reconciliation. A major deficit was found in the training and support available to practitioners caring for terminally ill Aboriginal people. Addressing this requires a policy shift by health care institutions. The most useful training interventions included directing non-Aboriginal workers toward local sources of cultural information, dispelling myths and stereotyping and assisting in exploring ethical issues arising from cross cultural conflict. Practitioners also needed support both in analysing difficult care situations so as to arrive at practical management solutions and in debriefing their emotional responses. This would reduce the stress of providing cross cultural terminal care and improve service delivery. Palliative care in Central Australia can only be developed with input from both Aboriginal and non-Aboriginal participants. It cannot be progressed without the guidance and support of Aboriginal workers and community members, which requires Aboriginal empowerment at all levels of planning and decision making. This reflection on the nature of cross cultural terminal care, from the viewpoint of professionals within the majority culture, will contribute to the development of a culturally safe practice for working with Aboriginal colleagues and clients.