‘Finishing up’ on country: challenges and compromises
Abstract
A core consideration in the care of Indigenous patients at the end of life is their place of death. Dying in community can be of paramount importance to Indigenous people. This paper reports the experiences of the Top End Palliative Care Service with respect to the barriers and solutions in the return of Indigenous patients to community for end-of-life care. These barriers include not only those associated with the significant distances and remoteness in the Northern Territory but, also, spiritual and cultural factors, which often influence healthcare delivery.
The term ‘finishing up’ is the culturally appropriate reference to death and dying for Indigenous Australians. The use of the terms death or dying may cause discomfort or offence. A core consideration in the care of Indigenous people at the end of life is their place of death. For many Indigenous people from rural and remote areas, the need to ‘finish up’ on country is paramount. In this paper, we examine the challenges we encounter in returning patients to country for end-of-life care, some measures that have been taken to overcome these barriers and the many barriers that still remain.
The land holds particular spiritual and cultural importance for Indigenous people. An Indigenous patient may prioritise their spiritual and cultural needs over their physical distress. Many Indigenous patients are willing to forfeit the time gained with life-prolonging treatments administered in tertiary centres in order to return to country. Time spent in community may be more important than remaining in hospital for maximisation of symptom control.1 Pam McGrath, in her interview of Indigenous patients, care givers and healthcare workers, was able to dissect some of the reasons behind this. These included the connection to land and community, being in a familiar place in order to pass on sacred knowledge, opportunity to enjoy the food (bush tucker) of their culture, to enable the dying individual's ‘animal totem’ to return to the land and to allow the right person in the family network to provide care.2 The ‘animal totem’ is given to the individual by their ceremonial elder during their initiation or ‘dreaming’ when they attain adulthood.
It is appropriate to remind the readers at this point of the unique demographics of the Northern Territory (NT). Indigenous Australians make up 32.5% of the population, in contrast to only 2.5% of the total population of Australia.3 Eighty-one percent of the Indigenous persons of the NT live outside of its capital – Darwin.3 The NT has 641 discrete Indigenous communities, and 570 of these communities have populations of less than 200.4
Indigenous males and females of the NT have a life expectancy 14.4 years lower than their non-Indigenous counterparts.5 The aetiology of this ‘gap’ includes chronic ‘lifestyle’ diseases, mental illness, violence, accidents and trauma. These issues and the likely problems in ‘closing the gap’ were discussed in a previous paper published in this journal by Gracey.6 Indigenous patients also have significantly higher mortality from cancer, even when taking into account stage at diagnosis, treatment and comorbidities.7 Those from remote areas have even higher mortality and lower survival compared to metropolitan areas.8 In that study, Indigenous patients from remote backgrounds had greater delays in diagnosis, more advanced stage at presentation and less treatment.
This disadvantage or ‘gap’ between the Indigenous and non-Indigenous peoples of the NT is also present at the end of life, where there are significant challenges to the goal of ‘finishing up’ on country. We present some of the barriers we have encountered, followed by action undertaken in the NT and conclude with areas for improvement in the future.
- Equipment: Access to equipment such as mattresses, wheelchairs, lifters and oxygen concentrators. There is almost always a delay in receiving equipment, and essential maintenance is often neglected. A hospital bed is not a possibility for the vast majority of rural and remote patients.
- Facilities: What may be considered standard in the urban setting, for example, refrigeration for medications or washing machines to launder linen, are sometimes not readily available. It is important to note that for Indigenous people, some of these considerations may not be as essential as they appear to others. For example, for many Indigenous people, their sweat and body odour is an important part of their spiritual connection to their land and ancestors. It is used to identify countrymen's bloodline, including their intentions, when visiting unfamiliar lands. Prejudice often results from the misinterpretation of this as ‘poor hygiene’ or lack of self-care.
- Transport: Wet seasons can pose significant problems by making road travel impossible and rendering many communities reliant on supplies through airplane or barge – both of which are weather-dependent. Poor weather conditions can lead to a delay in the supply of basic equipment or essential medications for end-of-life care.
- Medications: Access to pharmaceuticals in a timely fashion is often impaired as most pharmacies are located in the larger towns and cities.
- Carer supports: Local respite options are extremely limited; thus, the burden on the family can become significant. They are almost exclusively located in a city or town (e.g. Darwin, Katherine, Gove), which can be some distance from country. Admission for respite carries with it the risk of deterioration and death outside of community.
- Lack of specialised care: The NT palliative care services operate out of Darwin and Alice Springs. While we endeavour to provide as much support and guidance as possible, the burden of care falls to the primary care professionals and community nurses. Many of the community clinics see one or two palliative patients per year. With a high staff turnover, it becomes difficult to educate and train community staff who can act as local ‘specialists’.
- Indigenous grief practices: May include vacating the dwelling where the person has lived and died.1, 9 The house may be abandoned for a week, many months or even a year. This can lead to overcrowding and impact the care of other patients who are being cared for in the same dwelling.
- ‘Payback’ and ‘blame’: These are pertinent concepts in Indigenous culture. Some family members may be hesitant to administer end-of-life medications9, 10 for fear of poisoning. ‘Blame’ may be attributed to family members who administer these medications, and they may be subject to ‘payback’. This can include physical punishment. These beliefs may even extend to community Indigenous liaison officers and Aboriginal health workers, who are not related to the patient,11 thus further limiting the administration of medications at the end of life. The inability to administer necessary end-of-life medications can lead to less than optimal symptom control.
- Suffering: Indigenous customs and beliefs can sometimes dictate that suffering is a necessary part of a culturally determined sickness. Treatments directed at mitigating symptoms may be seen as interfering.1
- Indigenous liaison officers and Aboriginal health workers in the community palliative care services who advise the team on culturally appropriate care of Indigenous palliative care patients. In certain instances, the patient may not be the key decision-maker (despite having decision-making capacity). The appropriate clinical information – the ‘right story’ – needs to be provided to the appropriate person, the ‘right person’.1, 9, 12 Offence and withdrawal from care may occur if clinical information and decision-making power are not offered to the ‘right person’. The Indigenous liaison officer or Aboriginal health worker is most often best equipped to make this assessment of who is the ‘right person’ on behalf of the treating team. The Indigenous liaison officer or Aboriginal health worker also often plays a significant role in community liaison, including the planning and transfer of patients back to community for end-of-life care. In returning the deceased person for burial in country, every family member has a delegated role to play, from transferring the body to the burial grounds and ceremonial farewell.
- ‘Aboriginal Cultural Awareness’ is now a mandatory module for new staff at the Royal Darwin Hospital.
- The NT government-funded Patient Assistance Travel Scheme provides financial support for patients ‘returning to country’ to ‘finish up’;13 this includes medically staffed ‘CareFlight’ of individuals who are too unwell for a charter or commercial flight.
- The Rural Community Palliative Team (clinical nurse manager, Indigenous liaison officer/Aboriginal health worker and palliative care doctor) visits patients and supports primary care professionals in remote community clinics.
- Telehealth services are now widely available and have facilitated communication between the urban-based palliative care teams and remote communities. This often allows the remote clinic staff, patient, family and ‘right person’ to discuss issues, such as symptom management, prognosis, goals of care and the preferred place of end–of-life care. This can prevent unnecessary relocation that risks ‘finishing up’ outside of country. Telehealth also allows the assessment of visual cues – essential to ensure the understanding of the ‘right story’.
- Program of Experience in the Palliative Approach (PEPA), 14 a federally funded programme that provides remote workshops to educate community health staff. PEPA also enables rural and remote clinic staff, including Indigenous liaison officers and Aboriginal health workers, to visit the Darwin palliative care team.
There is a need for increased utilisation of advanced personal plans (APP) in Indigenous populations to help identify and document goals of care and end-of-life preferences. There is sparse research in this area. The results from participants in a study of Indigenous patients in Western Australia suggested openness to APP, especially when introduced in a whole community approach and with inclusion of Indigenous liaison officers or Aboriginal health workers.15 The results of this study support a role for ‘community APP champions’ in various communities, who would take on this challenge. Early discussion of goals of care and end-of-life preferences could play an important role in preventing the unnecessary transfer of patients with a life-limiting diagnosis to tertiary centres. This would allow a patient who prioritises ‘finishing up’ in country to stay in the community and not risk a transfer that may subsequently not allow this to occur.
There is a widespread lack of understanding of Indigenous belief systems and the significance of connection to the land. In recent years, the Australian government has announced plans to close a large number of Indigenous communities in remote areas, with the former prime minister stating ‘What we cannot do is endlessly subsidise lifestyle choices if those lifestyle choices are not conducive to the kind of full participation in Australian society that everyone should have’.16 Australian people and politicians need to be better educated regarding Indigenous culture and the paramount importance of being and ‘finishing up’ on country in order for the practical obstacles to be addressed.
In conclusion, while many challenges remain, to have choice and control over place of death is one of the principles of a good death,17 and so, these challenges need to be addressed. Indigenous patients often choose what the western palliative model may regard as a sub optimal death for that death to occur in community. In order to improve the number and conditions of people dying ‘on country’ in Australia, there needs to be ongoing support from all levels of government, with issues ranging from infrastructure to education to community respite as well as the need for continuing cultural awareness and increased utilisation of Indigenous liaison officers and Aboriginal health workers.
