Significant End-of-Life Rural Issues for Australia Dr Pam McGrath, B.Soc.Wk., MA, Ph D Director, International Program of Psycho-Social Health Research (IPP- SHR)

7 million or 32% Australian population live outside metropolitan areas 3% of Australians live in remote or very remote areas Australian Institute of Health and Welfare Rural, regional and remote health: indicators of health system performance. Rural Health Series no. 10. Cat. no. PHE 103. Canberra: AIHW.

Vast distances, economic hardship, higher proportion of disadvantage groups such as Indigenous peoples, lack of critical population mass translates into high cost of health service infrastructure, shortage of health care providers, difficulty retaining doctors, translate into major health care concerns Australian Government Department of Health and Ageing. Report on the Audit of Health Workforce in Rural and Regional Australia. Commonwealth of Australia, Canberra, April 2008.

Rural and remote peoples health outcomes substantially poorer, less healthy, shorter life expectancy, higher death rates, higher rates of chronic diseases and injury, more likely to have a disability. Hegney D., McCarthy A., Rogers-Clark C., & Gorman D., Why nurses are attracted to rural and remote practice. Aust J Rural Health, 2002, 10:

Ageing population – 35% aged 65yr and over in rural and remote areas. Movement of young to cities. Access to aged care, health care and ancillary services (e.g. transport, respite, aids) limited, local services less comprehensive, more expensive to run, and less infrastructure. National Rural Health Alliance, Ageing in rural, regional and remote Australia, Fact Sheet, May 2009.

One third of Australians with cancer live in r & r areas; higher mortality rate especially with lung, prostate and colorectal cancers ; diagnosed later so more advanced; poorer treatment -38% hospitals administering chemotherapy no oncologist; no trained oncology nurses; only 7% access to radiation unit; long waiting lists, lack of allied health Clinical Oncological Society of Australia (COSA) Mapping rural and regional oncology services in Australia, 2006.

Death rates for men in r & r 5-25% higher; Men significantly higher rates of cancer diagnosed at a late stage related to avoidance or delay in visiting doctor; Men in rural areas do not talk about health, visit doctors as last resort, and have a set of attitude that act against preventative or health seeking behaviours e.g. ‘big bloke’ sign of strength rather than over weight, don’t ask for help, more risk taking. National Rural Health Association, Submission to Senate Select Committee on Men’s Health, Deakin West, Canberra, 2009,

Indigenous people make up substantial proportion of population in R&R; die younger, less healthy, and have fewer services than other rural peoples Hunter E., Staying tuned to developments in Indigenous health: reflections on a decade of change. Australas Psychiatry, 2003: 11: ; Lowenthal R, Grogan P., Kerrins E. Reducing the impact of cancer in Indigenous communities: ways forward. Med J Aust, 2005; 182:105-6; Maddocks I. Palliative care on the margins. Prog Palliat Care 1999; 7:107-8

Mortality rate for Indigenous peoples 3 times higher than average Indigenous peoples utilise aged care services at a younger age, consistent with poorer health status and lower life expectancy; Carers challenged by distance, social isolation, poverty and overcrowding Palliative Care Australia (PCA) The hardest thing we have ever done: The social impact of caring for terminally ill people in Australia, Canberra, 2004.

IPP-SHR research focus on two major topic areas 1.Relocation for specialist care 2.Indigenous end- of-life care

Relocation Specialist care centralized in major metropolitan cities which are long distances from rural and remote areas – psycho-social impact on all aspects of the continuum of care

Relocation Dealing with challenge of serious illness out of comfort of home, family/friend network with major impact on family and personal life (separation; life on hold; loneliness; isolation) Importance of carer escort Significant financial impact exacerbated by problems with patient travel and accommodation assistance schemes Major difficulties associated with the palliative care stage and the need to return home to die; lack of local palliative care or hospice services. Few specialist centers have appropriately developed referral pathways or established support in local communities to facilitate end-of-life return home; many die in specialist treatment centre in major metropolitan area away from care of family and friends

Relocation for Indigenous peoples Special connection with land and community Fear (leaving home land, travel, out of comfort of family/community, fear western medicine) Different cultural perspective on health and healing Importance of local, community based health care services For traditional Indigenous peoples understand that the referral to a major metropolitan hospital for specialist treatment is a cultural, as much as a clinical, decision and so is to be avoided whenever possible. Full discussion of the costs/benefits needs to be conducted with appropriate family members. Appropriate kinship escorts and presence of Aboriginal Health Care Workers essential

Indigenous Australians end-of- life cultural issues The ‘Living Model’: A Resource Manual for Indigenous Palliative Care Service Delivery McGrath P & Holewa H Researchman Publishers

Publications are available by request from: © Pam McGrath No part of this presentation can be used, altered or distributed without the express permission of the author.