Chair: Wendy Gain
a. Specialist palliative care provided to indigenous Australians: Findings from a multijurisdictional dataset
All authors: Dr John Woods—The University of Western Australia
Prof Claire Johnson—Monash University, Eastern Health (Victoria), and The University of Western Australia
Dr Hanh Ngo—The University of Western Australia
Dr Judith Katzenellenbogen—The University of Western Australia
Dr Kevin Murray—The University of Western Australia
Ms Jade Newton—Curtin University and The University of Western Australia
Dr Eva Malacova—The University of Queensland, Curtin University, and The University of Western Australia
Dr Shaouli Shahid—Curtin University and The University of Western Australia
Prof Sandra Thompson—The University of Western Australia
Presenting author: Dr John A Woods
Background: Health service performance influences needs for community-centred end-of-life care. Aboriginal and Torres Strait Islander people have distinctive end-of-life experiences—they develop life-limiting illnesses at younger average ages than other Australians, more commonly reside outside metropolitan areas, and frequently encounter cultural barriers within healthcare systems. Detailed large-scale appraisals of palliative care services for Indigenous Australians are lacking.
Aims: Using multijurisdictional data collected by the Palliative Care Outcomes Collaboration, to compare Indigenous and non-Indigenous patients on (i) representation in care by participating specialist palliative care services, (ii) demographics, residence and diagnosis, and (iii) equity of care received according to benchmark-derived indices.
Design: Detailed antecedent data quality assessment, quantitative cross-sectional and longitudinal analyses incorporating multiple regression and matching techniques to minimise confounding, with multiple imputation to handle missing data.
Results: The dataset (1/1/2010–30/6/2015) comprised 144,951 subjects: 1515 Indigenous (1.1%, much lower than expected from statutory data) and 138,438 (95.5%) non-Indigenous. Patients missing an “Indigenous identifier” (4,998; 3.5%) diminished markedly over the study period, without a corresponding increase in the proportion identified as Indigenous. Indigenous compared with non-Indigenous patients were younger at entry (mean 62.8 versus 73.0 years, p<0.001), more frequently resided outside major cities (45.3% versus 21.8%, p<0.001), with similar proportions having a cancer diagnosis (79.8% versus 79.2%, p=0.567). Indigenous patients more often encountered delays in initiating care episodes (adjusted odds ratio 1.41, 95% confidence interval 1.07–1.86), but did not disproportionately experience occurrence of or delayed institution of management for unanticipated/“breakthrough” problems. Symptom/problem trajectory analyses are nearing completion.
Conclusions/Application: There is no consistent pattern of measurable inequity in palliative care provided to Indigenous patients able to access specialist services. However, considerable under-representation of Indigenous Australians with life-limiting illnesses in specialist palliative care nationwide likely reflects access barriers, underscoring heightened importance in this population of capacity building for community-based end-of-life support.
b. Since Te Kore and Hiringa: The intersect of spirit, landscape and Maori today
All authors: Vanessa Eldridge, Mary Bennett, Tau Huirama
Presenting author: Vanessa Eldridge
In 1907 the NZ Government passed the Tohunga Suppression Act. "Every person who gathers Maoris around him by practising on their superstition or credulity, or who misleads or attempts to mislead any Maori by professing or pretending to possess supernatural powers in the treatment or cure of any disease, or in the foretelling of future events, or otherwise" was liable for prosecution.
Tohunga were the holders of knowledge of most rites, and knowledge in general health and wellbeing, and the use of medicinal plants. The diseases brought with the colonists were catastrophic for Māori and traditional healing, at times, were no match. Alongside the rise of missionary teaching, the power of traditional healers were further eroded. Some Tohunga declined to pass on their spiritual and medicinal knowledge. It hastened assimilation and belief that Māori were ‘a lost race’.
Far from lost, there has been a reclamation of Rongoā Māori (traditional healing practises) in recent years. Practises may involve plant medicine, water, karakia, spirit, energy and hands on body work to support people to heal themselves. Wairuatanga is a concept akin to spirituality and since Te Kore (a phase of creation) it remains vital to Māori.
Four Tides Indigenous healers work from home, clinic and community settings. They plant medicinal trees to ensure they are freely available for public use forever more. Most indigenous peoples recognise the interconnectedness of all things and our responsibility in that. Four Tides will share some of the joys and challenges of establishing and maintaining traditional healing in today’s health settings. They believe Rongoā is the healing intersect of spirit, landscape and the Māori people.
c. The past is present: Death systems among the indigenous Sami in Scandinavia
Doctoral candidate Lena Kroik, Dept of Nursing, Umeå University and Centre for Rural Medicine, Sweden
Dr. Olav Lindqvist, Division of Innovative Care Research, Dept of learning, informatics, management & ethics, Karolinska Institutet and Dept of Nursing, Umeå University
Dr Krister Stoor, Dept of Language Studies and Director, Center for Sámi Research, Umeå University
Professor Carol Tishelman, Division of Innovative Care Research, Dept of learning, informatics, management & ethics, Karolinska Institutet, Stockholm Health Care Services, and Centre for Rural Medicine
Presenting Author: Prof. Carol Tishelman
Kastenbaum’s death system concept examines “the interpersonal, sociophysical, and symbolic networks” through which an individual’s relationship to mortality is mediated by society.” In this research-based presentation, we discuss what we learned of death systems among the indigenous Sámi peoples of northern Fennoscandia and the extent to which Kastenbaum’s conceptualization of death systems is appropriate to Sámi culture.
We were interested in experience-based knowledge about EoL issues among the Sámi. The database therefore consists of transcribed interviews with 15 individuals, Sámi and non-Sámi, chosen for their varied experiences with EoL issues. These were first inductively analyzed using a qualitative approach. Kastenbaum’s model of death systems, consisting of functions along a time trajectory from prevention to social consolidation after death, and the components people, times, places, and symbols/objects, was then considered in relation to these data.
Kastenbaum’s model provided a cohesive framework for understanding aspects of the death system that were Sámi-specific, Sámi-relevant as well as what has been lost and retained over time. However, whereas Kastenbaum differentiated among the components of the death system, we found these were often interrelated among the Sámi. Seasonal changes and relationships to nature instead of calendar time, dominated many aspects of death systems, linking people, places and times. The role of the extended family in enculturation across generations and support throughout the EoL was salient. Numerous markers of Sámi culture, both death-specific and those recruited into the death system, served to strengthen community identity in the EoL.
Conclusions/Application to PHPC
The Sámi identity and sense of community appeared central to both that which was described as functioning well in death systems, as well as that which was said to be problematic. This study supports theoretical development about death systems, by critically evaluating transferability to other contexts.
d. Developing palliative care programs in indigenous communities: Lessons learned from Canadian First Nations communities
All authors: Luanne Maki, Fort William First Nation
Maxine Crow, Naotkamegwanning First Nation
Jeroline Smith, Peguis First Nation
Lori Monture, Six Nations of the Grand River Territory
Mary Lou Kelley, Lakehead University
Holly Prince, Lakehead University
Presenting Author: Holly Prince
Background: First Nations people in Canada are dying of illnesses where they could benefit from palliative care; however, there is currently little research evidence to guide the development of local palliative care programs. Our research “Improving End of Life Care in First Nations” (EOLFN) funded by the Canadian Institutes of Health Research (2010-2016) provides original data and an approach to addressing these gaps in knowledge.
Aims: This presentation describes a six-year research project focused on improving the end-of-life care in the four First Nations communities in Canada by developing community-based palliative care programs and teams.
Design/Approach: This research was a comparative case study design conducted in partnership with four First Nations communities in Canada. It adopted community capacity development as its theoretical perspective and a participatory action research approach. It describes a model that includes: local community development, regional partnerships, education, and community empowerment. Innovative strategies to address these needs were developed, implemented and evaluated.
Results: Each of the four participating communities developed a unique palliative care program based in community culture and context. In addition, a framework and a process for developing local palliative care programs and teams in Indigenous communities was created in the form of a workbook.
Conclusions: This research provides a Canadian example of implementing a public health approach to palliative care in an Indigenous context. The approach is grounded in local culture and context and can support other Indigenous communities interested in quality improvement and developing palliative care programs.