Medical Officer, Territory Palliative Care Service, Alice Springs, NT
This paper examines the interface between cancer treatment and palliation for patients living in remote areas, using an example from central Australia. Issues identified include the variable distribution of health care resources, cultural and language differences between Aboriginal clients and health care staff, and consideration of the benefits and burdens of treatment.
Alice Springs provides regional health services for nearly 50,000 people living in remote inland Australia, of whom approximately one-third live on small communities scattered across the southern Northern Territory and cross-border regions of South Australia and West Australia, and one-third are Aboriginal people from a wide range of language and cultural groups1. The Royal Adelaide Hospital runs an outreach medical oncology clinic at Alice Springs Hospital three times a year. The regional palliative care service is based in Alice Springs; one third of its referrals are from remote areas and over half are Aboriginal people*.
Remoteness is a relative concept. Many patients being medically managed from Alice Springs live hundreds of kilometres from the town. Coming to town means being in a different country, where different languages are spoken, and the patient may be alienated physically, culturally and spiritually. Cancer diagnosis and treatment may require a further journey 1,500km south to major centres in Adelaide. Distance may have an enormous practical impact on the diagnosis, medical decision-making, care planning, treatment and palliation of cancer.
Jane, a 49 year old, married, Aboriginal woman living at Community X, 350 km east of Alice Springs, presented to the Aboriginal Medical Service in Town Y, 500 km north, with symptoms of weight loss, abdominal pain and dysphagia. In Alice Springs, CT revealed mediastinal lymphadenopathy and metastases in liver and bone, and a histopathological diagnosis of oesophageal cancer was later made.
Following oncology advice, Jane was offered palliative radiotherapy, chemotherapy and a palliative care referral. Jane spoke little English, and palliative care staff were concerned that she had not fully understood her prognosis and the nature and purpose of treatment, however no interpreter in her language was available. A final treatment decision was deferred until the arrival of family members from X and Y, who acted as both advisers and interpreters.
Jane accepted treatment, travelled to Adelaide with a family escort, and underwent radiotherapy and her first two cycles of chemotherapy (Cisplatin and 5FU). The third cycle was completed successfully in Alice Springs, despite a prolonged admission due to a pyrexial illness. Unfortunately, the fourth cycle was not given when Jane next presented, presumably due to a misunderstanding, and during a subsequent visit for specialist review, she was not seen by the oncologist. At a family meeting convened at X, Jane decided against further chemotherapy (although the doctor again doubted her comprehension), and opted to remain there for terminal care.
She moved near to the clinic and her family gathered from Y and outstations of X to provide home care and support. Coordinated palliative care was planned, involving regular multidisciplinary telephone reviews between the palliative care service in Alice Springs and the primary care team at X, assistance with medications and equipment, and the option of a remote community visit for palliative assessment and staff education.
Several weeks later, Jane was evacuated to Alice Springs Hospital for management of increased pain, vomiting and dehydration. Clinic staff indicated that her family were worried about her dying on the community. She was treated for a UTI and severe constipation, her symptom control was improved, and she was discharged on oral medications, with the option of returning for terminal care. Parenteral medications, a syringe driver and other equipment were sent to the community to support changing needs. Jane was cared for at home until she ceased oral intake, and then re-admitted to hospital where she died some days late.
In central Australia, treatment decisions and outcomes are determined by a constellation of geographical, resource, cultural and communication factors. While Jane was offered best practice management of her cancer, and attempted valiantly to undertake her treatment, these issues impacted at every stage of her interaction with the health care system.
Delays in illness presentation may reduce treatment options. It has been suggested that delayed identification may contribute to the significantly increased mortality rates from cancer amongst Indigenous Australians2,3. Presentation for health care depends on patient factors, including their conceptions of illness and their level of trust in the health care system, and systemic factors, including physical access to and cultural acceptability of services.
There is considerable Australian4-7 and international8-10 evidence that Indigenous people in formerly colonised countries may distrust government services such as health care institutions. This results from previous experiences of discrimination and disempowerment11,12. Although Aboriginal people do not access mainstream services well13, acceptability may be enhanced within Aboriginal medical services, and by improving access to Aboriginal clinical, liaison and interpreter staff14,15.
The distribution of health services in the Northern Territory is skewed towards urban areas16, and in remote regions, where 69% of the Aboriginal population lives17, equity of access is not being achieved18,19. For logistic reasons, some diagnostic facilities can be provided only in larger centres. Thus CT is available in Alice Springs and Darwin, whereas MRI is available only in Adelaide.
Geography is immutable, but patients’ access to, and acceptance of, diagnostic services are not. Addressing these should improve their treatment options and may shift the balance away from palliation and towards more curative treatment. For patients, the potential benefits of this shift will depend on the quality of care planning.
b) Care planning
Successful care planning requires appropriate decision-making. This should include the input of the patient, family caregivers, and health professionals at each level of the health care system. The burdens and benefits of treatment need to be balanced from the patient’s perspective.
For patients whose first language is not English, information giving and important treatment decisions require professional interpreting. The adverse impact of poor communication on health care for Aboriginal people is well documented20-22. The use of family interpreters, while common, is fraught with difficulties23. Cultural requirements for family decision-making should be respected. Western notions of patient autonomy may be inappropriate in some cultural contexts24,25. In Aboriginal societies, as with some other cultural groups, important decisions are generally made collaboratively26-28. The Aboriginal kinship system will determine the correct person to take on a decision-making or spokesperson role.
In terms of professional input, both primary care workers, who know the practicalities of the patient’s situation, and specialist oncology providers offer equally important advice. Liaison between care providers is considered an important function of the palliative care service in central Australia; service workers attend oncology clinics and hospital ward rounds, convene multidisciplinary care planning meetings, and try to maintain a palliative care perspective in the care planning agenda. This requires a patient and family centred approach, and an emphasis on quality of life.
For some remote clients, the difficulties of travelling long distances for treatment and spending extended periods of time away from family29,30 may outweigh the perceived benefits of treatment. As exemplified in the case history, the care plan must sometimes be revised. Both physical distance and socio-cultural alienation are important influences on the interface between cancer treatment and palliation.
c) Cancer treatment
The concentration of oncology treatment in specialist cancer treatment centres (and of palliative care expertise in major metropolitan palliative care units) facilitates excellence in care and rational use of resources. Access to such expertise is, however, more difficult for remote clients. While some technologies cannot be made available in remote settings, improved planning can reduce unnecessary journeys and the time away from home. A program of teleoncology case reviews between the Royal Darwin Hospital and the Royal Adelaide Hospital reduced the duration of Darwin patients’ treatment in Adelaide (and associated costs) by approximately eight days*.
For central Australian patients, chemotherapy may be initiated in Adelaide, but is generally completed in Alice Springs. The provision of chemotherapy in smaller and more remote centres raises issues of training, supervision, and supply.
Radiotherapy is only available in Adelaide. Travelling long distances for radiotherapy results in considerable social, cultural and financial costs to patients, which must be balanced against its potential benefits for improving quantity and quality of life. This becomes particularly important in the palliative phase, when patients are frailer and time increasingly precious. Distance from treatment centres, lack of financial and psychosocial support to travel there, and the ensuing social and family dislocation contribute to low radiotherapy treatment rates in Australia31. Cancer status at the time of presentation and treatment duration are important factors in deciding between treatments (for example, palliative versus curative treatment; radiotherapy versus surgery).
General surgery is available in Alice Springs, but specialist procedures only in Adelaide. For many cancer patients from remote communities, the prospect of a prolonged stay for surgical management in Adelaide is understandably daunting. In order to provide informed consent, the patient needs to understand, preferably prior to transfer, not only the rationale for and nature of the surgery, but its sequelae (eg laryngectomy care, colostomy care). Patients undergoing such procedures who live in situations of poverty or isolation face particular difficulties in returning to community care.
When a patient decides against, or withdraws from, active treatment, they should be supported in accordance with recognised standards of palliative care14, regardless of their preferred place of care.
The palliative care service based in Alice Springs has a regional responsibility to a dispersed and multicultural clientele. Its challenge is to overcome geographical, institutional and cultural impediments to care provision.
International data has shown that members of minority ethnic communities do not access palliative care services in numbers commensurate with their proportion in the mainstream population32-34. Ways of overcoming barriers to Aboriginal patients’ access to mainstream palliative care services have been previously described35. Many Aboriginal patients have expressed a wish to die on their traditional country, however access to appropriate support resources has been problematic in remote areas4,5,7, including the Northern Territory36,37. Poverty and lack of access to health hardware38 are important factors influencing the success of home palliative care36. If palliative care is to be delivered in the environment of the patient’s choice, in remote areas it needs to remain decentralised and flexible39,7. It also needs to be delivered in a manner that meets the cultural needs of Aboriginal patients and families14.
In a practical sense, this means building trust, and listening to those whose business it is to transmit cultural and family information. Good palliative care is not measured by the whiteness of one’s sheets or the frequency with which the patient is turned, but by maximising quality of life, in the patient’s terms, and fulfilling their wishes. In my experience, with adequate planning and liaison, good symptom control can generally be provided for patients living on remote communities.
The interface between cancer treatment and palliative care will shift depending on patients’ circumstances. These are not mutually exclusive management options, but interlocking methods of healing (here used in its broadest sense). Both treatment and palliation of cancer may be more difficult for patients living in remote Australia, due to their physical isolation from many services. In central Australia, Aboriginal patients face additional cultural and language barriers to cancer care. Best practice care can still be given, provided that it takes into consideration patients’ expressed needs and informed treatment choices. This type of cancer care is in accordance with the principles of palliative care, which emphasises quality of life, holistic care, and patient and family centred management14,40.
I would like to thank Professor Ian Olver for his helpful comments on this paper.
4 Aboriginal Research Institute. Developing an Aboriginal palliative care strategy for South Australia. Aboriginal Research Institute, Faculty of Aboriginal and Islander Studies, University of South Australia, Adelaide, 1998.
11 M Franklin, I White. “In sickness and health: the sociocultural context of Aboriginal well-being, illness and healing.” In: J Reid, P Trompf (eds) The Health of Aboriginal Australia. Harcourt Brace Jovanovich, Sydney, 1991.
24 J M Kaufert, R W Putsch, M Lavallee. “End-of-life decision making among Aboriginal Canadians: interpretation, mediation, and discord in the communication of “bad news”.” Journal of Palliative Care, 15, 1 (1999): 31-8.