E D I T O R I A L

Providing culturally appropriate palliative care

Cultural practices associated with the end of life are variedandoften linked to spirituality even in our increasingly sec-ularworld.Like themanynationsofEuropeandAsia,Abo-riginal and Torres Straight Islanders peoples (Aboriginalpeople) comprise a large number of diverse, culturally dif-ferent communities. However, the cyclical concept of life-death-life, spiritual connection to land or ‘country’ andthe central place of family and kinship connections as wellas various components of Christianity are common valuesin Aboriginal communities across Australia. Death is notnecessarily feared in traditional Aboriginal society, ratherit can be seen as a release of the spirit to join theunseen world.

Understanding our own cultural identity and having anawareness of the impact of how our culture shapes thewayweprovide services are important in all aspects of our prac-tice as pharmacists. However, the difficulty in dealingwiththese cultural differences can often be heightened whendealing with end-of-life care. The biomedical model is pre-dicatedon curing illnesses andprolonging life and thismaybe in direct conflictwith the priority thatAboriginal peopleoften place on alleviating spiritual and cultural symptomsof distress above physical symptoms.

Although palliative care as a medical specialty startedwith the care of terminally ill cancerpatients, there has beena shift in recent times to incorporate a palliative careapproach to people living with chronic conditions suchas cardiac, respiratory or kidney disease. Many Aboriginalpeople diagnosed with a palliative condition already haveoneof these; this adds to the complexityofmanaging symp-toms and coordinating care for both patients and theirfamilies.

I first got involved in the implementationof theNorthernTerritory (NT)Aboriginalpalliative caremodel1 (seeFigure1) in 2008 for patients living with chronic kidney disease.The model is composed of six concentric circles sharing acommon centre, which encompasses the patients and theirfamilies.Many communities in theNTmaintain traditionalcustoms around death and dying. Grief practices mayinclude not speaking openly about death and the use ofthe words death and dying may cause discomfort oroffence. It is important for pharmacists to be familiar withwords that can be used. In most places in the NT theseinclude ‘finishing’ or ‘finished up’.

In many instances the patients may not be allowed toknow the diagnosis or make treatment decisions for their

own spiritual wellbeing and cultural safety. These discus-sionsmust be heldwith the ‘right’person or people. A fam-ily member is often appointed be the person who thenrelays the information back to other members who areresponsible for giving consent for treatment options. Theuse of family meetings facilitated by an Aboriginal HealthWorker and Interpreter either in hospital or in the patient'scommunity can greatly assist with communication, assistwith family grief and bereavement and lessen the risk ofblame (payback) by alleviating misunderstandings.

The second circle signifies the priorities of culture, kin-ship and country. Often Aboriginal people living inregional or remote settings have to travel long distancesto access specialist palliative care services andare accompa-nied by carers or escorts. These people may change at dif-ferent stages in the progression of the illness. Escorts needto be well supported to allow them to fulfil their responsi-bilities. In hospitals, pharmacists can make them feel com-fortable in an unfamiliar setting, assist them tocommunicate information back to the family and commu-nity and involve them in any care that may be needed afterdischarge. Escortsmayalsohave chronic conditionsof theirown which need managing. Gathering of large groups ofextended family and community members is a mark ofrespect and this should be facilitated if the patient is in hos-pital. It is important for us to allow people to guide symp-tommanagement. Many Aboriginal people prefer to die intheir countrywith their extended family around them sing-ing to guide their spirit ‘home’, even if this has impacts ontreatments designed to improve physical symptoms.

Pharmacists can play a central role in setting up proto-cols and developing education resources for primary careproviders to manage common end-of-life symptoms2.Sometimes the illness may be attributed to the breakingof traditional cultural rules or violation of a taboo. ManyAboriginal people still use traditional healers and bushmedicines to help with symptommanagement. These hea-lers focus on themindand spirit of the sickperson andoftenthese can be used successfully together with biomedicaltreatments.

When an Aboriginal person dies away from his or hercountry, a family member is given the responsibility forescorting the body back for burial. This process can be sup-ported by ensuring appropriate travel arrangements aremade and there is good liaison between the hospital systemand funeral directors in the community. Some Aboriginal

Official Journal of the Society of Hospital Pharmacists of Australia

© 2014 Society of Hospital Pharmacists of Australia Journal of Pharmacy Practice and Research (2014) 44, 78–79doi: 10.1002/jppr.1015

communitiesmayhold their own coronial inquest into howandwhy an individual died. Cause of death may be attrib-uted to factorsdifferent from those assignedby thebiomed-ical system. There are a variety of ceremonies that may beperformed to pay last respects and smoking ceremoniesand sweeping of the place where the person had died arecommon. Often a person's name becomes taboo after deathand it is important to observe the local community proto-cols around this.

Althoughdeathmaynotbe feared it still causesgreat sor-row to Aboriginal people. Traditional practices arounddeath have many layers of function; they support the indi-viduals as they approach their own death and assist familymembers to process their grief. Funeral ceremonies takeconsiderable time and are one of themain vehicles for pass-ing on deep knowledge. The ceremonies turn the sense ofloss experienced at the death of a loved to an awarenessof what life is. Not attending ‘sorry business’ can bringshame to the extended family and other members withinthe kinship system. This may mean taking an extendedperiod of time off for Aboriginal staff members. It is also

a time where other ceremonies take place and an opportu-nity for different clans to come together and consolidaterelationships. An understanding of different cultural prac-tices around death and dying is essential if we are to facil-itate a good death.

Bhavini Patel, MRPharmS, MScClinical Engagement and Leadership Support (CELS),

Strategy and Reform, Darwin, AustraliaNICS-HCF Foundation Fellow (2007-2009), NT

Department of Health, Casuarina, AustraliaE-mail: bhavini.patel@nt.gov.au

REFERENCES

1 McGrath P, Watson J, Derschow B, Murphy S, Rayner R. Indigenouspalliative care service delivery – a living model. Darwin: NationalHealth & Medical Research Council, Charles Darwin University; 2004.

2 http://www.health.nt.gov.au/Palliative_Care/Health_Professional/Resources/index.aspx. Accessed 30 July 2014.

Figure 1 NT Aboriginal palliative care model. Designed by Beverley Derchow, an Aboriginal health worker working for NT palliative care.

Editorial 79

© 2014 Society of Hospital Pharmacists of Australia Journal of Pharmacy Practice and Research (2014) 44, 78–79