Thompson Sandra, Lyford Marilyn, Papertalk Lennelle, Holloway Michele
Western Australian Centre for Rural Health, The University of Western Australia, 167 Fitzgerald Street, Geraldton, Western Australia 6530, Australia
Rural Remote Health. 2019 Nov;19(4):5444. doi: 10.22605/RRH5444. Epub 2019 Nov 30.
Indigenous patients with life-limiting conditions have complex needs, experience reduced access to and uptake of treatment, and have lower utilisation of palliative care services than the general population. Lack of understanding of the role of palliative care and poor availability of culturally safe specialist palliative care services impact on Indigenous people's end-of-life decision-making.
To understand Aboriginal people's perspectives and experiences at the end of life, an exploratory study using facilitated group discussions in community settings in a region of Western Australia was undertaken. Local Aboriginal people were engaged to talk frankly about their wishes and concerns around end of life. The community consultations included two meetings at the local Aboriginal corporation, an evening meeting for invited community members, a meeting at the local Aboriginal community controlled health service and two further meetings of community members at local gathering places. These were supplemented by the analysis of previous in-depth video-recorded interviews that were undertaken with Aboriginal people with cancer reporting on their concerns and wishes.
The community consultations raised considerable discussion about wills, where to die, burial versus cremation, and the cost of funerals. Possibilities emerging from participants' reflections on the issue were public celebrations to honour someone's life, the potential use of sorting cards to help discussions about end-of-life personal wishes, and interest in making and decorating coffins. Aboriginal people with cancer raised similar issues, and focused on avoiding family disharmony by ensuring their family were aware of their end-of-life wishes.
Within a safe space, Aboriginal people were happy to talk about end-of-life wishes, although certain aspects of death remain contentious. Sorting cards, ceremonies, education and care roles involving Aboriginal people offer potential means for effectively engaging Aboriginal people in preparing for death and dealing with grief.
患有危及生命疾病的原住民患者有复杂的需求,获得治疗的机会减少且治疗接受度较低,与普通人群相比,他们对姑息治疗服务的利用率也较低。对姑息治疗作用的缺乏了解以及文化上安全的专科姑息治疗服务的可及性差,影响了原住民的临终决策。
为了解原住民在生命末期的观点和经历,在西澳大利亚一个地区的社区环境中进行了一项探索性研究,采用了促进小组讨论的方式。邀请当地原住民坦率地谈论他们关于生命末期的愿望和担忧。社区咨询包括在当地原住民公司举行的两次会议、一次为受邀社区成员举办的晚间会议、在当地原住民社区控制的健康服务机构举行的一次会议,以及在当地聚会场所为社区成员举行的另外两次会议。此外,还对之前与患有癌症的原住民进行的深度录像访谈进行了分析,这些访谈报告了他们的担忧和愿望。
社区咨询引发了关于遗嘱、死亡地点、土葬与火葬以及葬礼费用等方面的大量讨论。参与者对该问题的思考中出现的可能性包括举行公开庆祝活动以纪念某人的一生、可能使用分类卡片来帮助讨论临终个人愿望,以及对制作和装饰棺材的兴趣。患有癌症的原住民也提出了类似问题,并强调通过确保家人了解他们的临终愿望来避免家庭不和。
在一个安全的空间内,原住民愿意谈论临终愿望,尽管死亡的某些方面仍然存在争议。涉及原住民的分类卡片、仪式、教育和护理角色为有效地让原住民参与死亡准备和应对悲伤提供了潜在途径。