INTRODUCTION

Many changes have come about in the care of theterminally ill in Australia since the early 1980s. Compas-sionate care of the dying and their families by multi-disciplinary teams in many settings is now available tomany Australians. However, according to Doyle, hospicecare in the 1990s is still luxury care confined to theWesternised world. He asks whether we have anything tooffer other communities.1

This paper will attempt to identify some of the issuesthat influence the provision of palliative care to Aborigi-nals in remote communities in the Northern Territory.

BACKGROUND

In 1998 the Estimated Resident Population (ERP) of theNorthern Territory was 181 800 and 28.5% of thesepeople were indigenous Australians. Nearly 18 000 live inBounded Localities (population 200–999).2 This popula-

tion group, which tends to be nomadic, lives within anarea covering 1 347 225 km2. Some outstations are popu-lated only intermittently.

Most communities have clinic services, run mainly byregistered nurses and Aboriginal health workers (AHW)who are supported by visiting doctors. A telephone adviceand evacuation service is available through Aero MedicalServices (Territory Health Services) or the Royal FlyingDoctor Service. Few communities have a resident doctor.3

MORBIDITY AND MORTALITY INNORTHERN TERRITORY ABORIGINALS

The social and historical origins of poor Aboriginal healthare thought to be related to colonisation and the dis-ruption of the hunter–gatherer lifestyle by land loss andthe formation of fixed settlements. This led to marginalisa-tion from white society and discrimination, which was fol-lowed by unemployment, poverty and poor education.Today, poor housing and hygiene coupled with poor nutri-tion and alcohol and substance abuse all contribute to ahigh rate of disease.4 Aboriginal health consumers aredisadvantaged because of inadequate resources, ‘dividedresponsibility and poorly informed administration’.5

Death is an everyday part of life in communities in theNorthern Territory, where life expectancy of Aboriginal

Aust. J. Rural Health (2000) 8, 47–51

Correspondence: Catharine L. McGrath, Community HealthNurse, PO Box 41338, Casuarina, NT 0811, Australia.Email: fclmcgrath@octa4.net.au

Accepted for publication October 1999.

ISSUES INFLUENCING THE PROVISION OFPALLIATIVE CARE SERVICES TO REMOTEABORIGINAL COMMUNITIES IN THENORTHERN TERRITORY

Territory Health Services, Darwin, Northern Territory, Australia

ABSTRACT: Palliative care is a service available to many Australians subject to location and varying criteria. Thispaper seeks to identify some of the issues that hamper the provision of this sophisticated service to Aborigines living inremote parts of the Northern Territory. The paucity of literary sources of information demonstrates the need forresearch to be carried out in this field.

KEY WORDS: Aboriginal, Northern Territory, palliative care, remote.

Catharine L. McGrath

Review Article

48 AUSTRALIAN JOURNAL OF RURAL HEALTH

expressed. Health professionals need to be aware thatwhile these emotions cut across all cultural boundaries,there are cultural components of grief reactions that needto be understood if appropriate palliative care is to beoffered.11

The cultural differences between the dominant Anglo-Australian group and the Aboriginal Australian group aregreat, not least in the way disease and death are dealtwith. This poses particular problems for health providers.Health professionals may be so afraid of doing the wrongthing that they are struck by what Weeramanthri calls‘cultural paralysis’ when confronted by unfamiliar culturalcircumstances (Death and Dying in Aboriginal Communi-ties: Lessons for Life, unpubl. data, 1994).

A degree of cultural brokerage, in which messages,belief systems and instructions are exchanged betweencultural groups, is required. Asking, listening and obser-vation are important.11 This brokerage is particularly diffi-cult when ‘outsiders’ are dealing with cultures where someforms of knowledge are secret and can only be revealed tospecific people.

Care is largely derived from culture and needs to bebased on knowledge of a specific culture if it is to beeffective and relevant to people of that culture.11

DIFFERENT CAUSAL BELIEFS

There is a great difference between Aboriginal and West-ern medical explanations of disease. In his unpublishedpaper, Weeramanthri also states that medical diagnosesdescribe how disease affects the body but not why it doesso. Aborigines, he says, are searching for ‘meaning, notmechanisms’.

He continues to say that even when Aborigines havean understanding of Western causation, sorcery is ofteninvoked. Aborigines often make their own accommodationbetween these conflicting views and sometimes hold bothbelief systems without endorsing all aspects of either.They may choose the view of health professionals or thetraditional healer, depending on circumstance.

ATTRIBUTION OF CAUSE

Blame is often apportioned in Aboriginal communitieswhen death occurs. Attribution of cause serves a purposein decision making and conflict resolution after a death,which is not always obvious to outsiders.12

Aboriginal health workers and others are often reluc-tant to become involved near the time of death for fear ofbeing blamed. Weeramanthri gives an example of a youngboy with chronic renal failure who died within a day of

males is 20 years below that of other Australian males andlife expectancy of females is 16 years below that of otherAustralian females.4 Infant death rates are still three tofour times higher for Aboriginal people in the NT andmortality rate in the 25–50-year-old group is probably onthe rise.5 It appears that the transfer of death from youngto old persons and the rise of life expectancy that hasbeen apparent in the Western world this century has notbeen evident in Aboriginal communities.6,7 High levels ofearly and late stage dominant disease types, infectionsand nutritional deficiency lead to chronic ill health andearly death.3

In Death and Dying in Aboriginal Communities:Lessons for Life (unpubl. data, 1994), Dr Tarun Weeraman-thri states that death is so frequent that some Aboriginalcommunities are in either acute or chronic shock fromconstant bereavement. Because of close ties within a com-munity, every death inflicts a considerable degree of griefand sadness on large numbers of people. Despite all this,there has been no demand for better care of the dying inAboriginal communities, no ‘death awareness movement’or grassroots support for hospice care. In a society thatsuffers disproportionately from a broad range of social illswhich lead to poor health, this is unlikely to occur.

PALLIATIVE CARE AND CULTURALMINORITIES

Providing a hospice service requires a common ethicalstance that transcends the boundaries of creeds and coun-tries.8 It is incumbent on all health-care professionals toact in ways that prevent patients from suffering unneces-sarily because they do not belong to the dominantculture.8

Palliative care services must be shaped to fit theneeds of minority groups by learning about these potentialpatients and their families and about their physical, emo-tional and spiritual needs and support systems.9 However,health-care workers must keep in mind that while thedesire to provide quality care to all cultural groups may bebased on egalitarian principles, it may harm those who donot have the same needs and cultural expectations asthose of the dominant culture.10

SOME CULTURAL CONSIDERATIONS

A critical part of palliative care is to recognise the com-plex needs of individuals and families dealing withterminal illness. The cultural context surrounding the lossand grief experienced by dying patients and their familiesis an integral part of the way that grief is understood and

ISSUES IN PALLIATIVE CARE: C. L. MCGRATH 49

ery in the Territory, partly due to the lack of qualifiedinterpreters.16

In 1995, only 5% of Territory Health Services (THS)employees were Aboriginal. The THS is a far largerprovider of health services than any of the community-controlled services.13 The problem of poor communicationaround death is therefore likely to be one encountered bynon-Aboriginal health professionals.

The training of Aboriginal Health Workers (AHWs) atBatchelor College is carried out in English, which is aforeign language for many health workers. Carroll alsostates that while many trainees have a reasonable com-mand of English they are still ‘faced with significantsemantic challenge’.16 They are also faced with the chal-lenge of applying Western concepts of cause and treat-ment in their own communities where their patients mayhold very different causal beliefs.

Cross-cultural teamwork is common in Aboriginalhealth service delivery in the Northern Territory. Non-Aboriginal doctors and nurses, few of whom speak anAboriginal language, work with Aboriginal HealthWorkers. Weeramanthri feels this partnership is beneficialand that the two parties gain authority from each other.16

A pilot project undertaken in 1993 on how to talk toAborigines about ‘sorry business’ (rituals related to deathand grieving) found it was useful to work throughAboriginal health workers. The information was then com-municated from an Aboriginal perspective.17 Communica-tion of Aboriginal or Western medical knowledge affectsday-to-day life in a cultural context. The literature on cul-ture tends to stress difference. More needs to be knownabout the areas of similarity and overlap of scientific andcultural knowledge.17 Information about disease and deathmust be communicated with respect and cultural sensitiv-ity. There is a need for the ‘full story’ to be told withrespect for traditional explanations of the cause of death.17

As some forms of secret or sacred knowledge are onlyavailable selectively within traditional Aboriginal soci-eties, some Aboriginal people interpret lack of communi-cation about specific events as withholding of secretinformation. Western medicine has given Aborigines theidea of being all knowing. Saying ‘I don’t know’ when dis-cussing medical matters can be seen as evasion.11

This problem became obvious to the author whenvisiting an area where smoking and lung cancer are com-mon. During a conference with the family of a youngpatient dying of a cerebral tumour the question of why ayoung child who had never smoked could have cancercame up repeatedly. Telling the truth about not knowingcreated anger and frustration and repeated demands for‘the full story’.

receiving an injection. The person who gave the injectionwas blamed for the death.13

Blame can be directed at health staff other than theAHW. Although there may be physical threats or evenovert violence, threats are seldom carried out. Blame oftenpasses quickly. People who blame staff one week may turnup at clinics again the next. Health staff often misinterpretblame and this is seen as one of the reasons for burn-outin nurses and AHW.13

The implications for those working for a service thatonly deals with terminally ill patients seem worrying. Theconcept of palliative care and the role of service providersmust be communicated effectively and, if the benefits ofsuch a service become obvious, people on communitieswill accept the role of these health professionals(T. Weeramanthri, unpubl. data, 1996) Informal informa-tion from Territory Palliative Care suggests that this ishappening (unpubl. data, 1999).

PLACE OF DEATH

Many Aboriginal people wish to go home when they arevery ill as they wish to die where they belong.13,14 It iscommon for Aboriginal patients who are given a terminaldiagnosis in hospitals to request discharge immediately togo back to ‘my country’.14 Most families want their rela-tives to die at home. However, physicians have reportedcases where the family was reluctant to allow the patientto leave hospital even when it was possible for them to doso. Reasons were surmised to have been that there maynot have been resources to look after them in the commu-nity, that the family did not want to be held responsible forthe death or that the family structure had broken down.14

CROSS-CULTURAL COMMUNICATION INHEALTH MATTERS

Poor communication on health issues leads to dissatisfac-tion in all societies while good communication leads tobetter health outcomes.10 Communication is vital in theprovision of health care.

Although language is only one factor in communica-tion, it is especially significant in the Northern Territorywhere the Aboriginal population is so large. More than70% of Aborigines speak a language other than English inthe home while 25% (11 000) claim to speak little or noEnglish at all. Although the definition of a language or adialect is unclear, at least 40 different languages areknown to exist in the Northern Territory.15 There is mini-mal use of Aboriginal interpreters in health service deliv-

50 AUSTRALIAN JOURNAL OF RURAL HEALTH

A study conducted in 1995 showed that there wascontinuing dissatisfaction among Aborigines in the North-ern Territory about communication and information givento them concerning individual deaths. Even while recog-nising that it might be considered patronising, somephysicians did not attempt to cover all of the issues thatthey would have covered with non-Aboriginal families.Reasons given for this included having to use simpleexplanations and terminology, not only in order to beunderstood but also in order to avoid the confusion some-times created by Western causative explanations forpeople who interpret health issues in terms of relation-ships between people rather than scientific fact.12

OTHER CONSTRAINTS ON THE DELIVERYOF PALLIATIVE CARE SERVICES

Tracy Worral, Project Officer, identified constraints to thedelivery of palliative care respite in remote communitiesin the Northern Territory on behalf of the NT CancerCouncil (unpubl. data, 1996). These constraints applyequally to the delivery of any palliative care service andare summarised under the following headings:

InfrastructureConstraints on the delivery of palliative care respitegrouped under the category of infrastructure included thefollowing: no infrastructure to support the use and mainte-nance of sophisticated medical equipment or even appli-ances such as refrigerators, which require electricity;possibly no clean water supply; inadequate and over-crowded housing with no facilities for looking after high-dependency patients, no laundry facilities and no basiccomforts such as mattresses or bedding; and inadequatefood and exorbitant food prices at community stores.

IsolationConstraints on the delivery of palliative care respitegrouped under the category of isolation included the fol-lowing: remoteness and isolation compounded by themobility of the Aboriginal population; health providersvisiting once a week or less in extremely isolated areas;and the enormous cost of providing ongoing services tothose located in small, isolated communities.

TransportConstraints on the delivery of palliative care respitegrouped under the category of transport included the fol-lowing: care provision compromised by infrequent orunreliable transport systems, infrequent flights or closedairstrips, and impassable roads or tracks which can pre-

vent both medical supplies and trained staff reaching acommunity or outstation.

StaffingConstraints on the delivery of palliative care respitegrouped under the category of staffing included the follow-ing: inadequately staffed remote Health Clinics whereacute work takes precedence and lack of palliative care-trained people to undertake care of the terminally ill inthis setting.

Criteria for palliative service provisionConstraints on the delivery of palliative care respite underthis category are inappropriate criteria for service provi-sion in communities where people do not differentiatebetween long- or short-term illnesses or even disability. Inthis case, the type of disease or death is not seen as abasis for service provision.

Social and cultural issuesConstraints on the delivery of palliative care respitegrouped under this category included the following: socialbreakdown and substance abuse adversely affecting theway some families and communities look after the dying;and interference with traditional kinship responsibilitiesby the introduction of paid services designed to givefamilies respite (such as laundry or cooking) but whichhave undesirable social and cultural implications (T. Wor-ral, unpubl. data, 1996).

CONCLUSION

The issues raised in this paper must be seen, not as barri-ers, but as challenges that can be overcome; they must beaddressed through culturally sensitive consultation,research and education.

The organisational structure and climate to facilitatepalliative care services and education was initially devel-oped in the Northern Territory in response to the passingof the now defunct Rights of the Terminally Ill Bill of1995. Territory palliative care is making a difference tothe care of the terminally ill but the issues identified inthis paper are still to be confronted. Remote area nursesand Aboriginal health workers are ideally placed toundertake cross cultural research and to contribute to thedevelopment of this service.

The history of hospices is littered with examples ofinnovative solutions to these complex issues. It is hopedthat the spirit which led to those solutions will ensure thatremoteness and cultural differences do not deny peopleaccess to hospice services if they wish to use them.

ISSUES IN PALLIATIVE CARE: C. L. MCGRATH 51

ACKNOWLEDGEMENTS

The author gratefully acknowledges Dr Roger Hunt of theFaculty of Health Sciences, Flinders University, for initi-ating this literature review, and Professor Jennifer Watsonof the Centre for Clinical Nursing and Research, NorthernTerritory University, for her helpful comments on thisarticle.

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