Aoun Samar M, Richmond Robyn, Jiang Leanne, Rumbold Bruce
Perron Institute for Neurological and Translational Science, Nedlands, WA 6009, Australia.
Public Health Palliative Care Unit, School of Psychology and Public Health, La Trobe University, Melbourne, VIC 3086, Australia.
Healthcare (Basel). 2021 Nov 23;9(12):1615. doi: 10.3390/healthcare9121615.
Consumer experience of palliative care has been inconsistently and selectively investigated.
People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received.
353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement.
A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings.
对姑息治疗的消费者体验进行的调查一直缺乏连贯性且具有选择性。
通过社交媒体和护理组织招募了西澳大利亚州在过去五年中经历过危及生命疾病的人群（2020年），并邀请他们就所接受护理的体验完成一项横断面消费者调查。
353名失去亲人的护理者、现任护理者和患者做出了回应。那些获得最佳临终关怀质量的“赢家”是那些知晓姑息治疗作为临终护理（EOLC）选项、符合进入并能够获得专科姑息治疗项目资格且主要诊断为癌症的人。那些接受了足够但并非最佳实践的临终护理的“输家”是那些不知道姑息治疗作为EOLC选项、不符合或无法获得专科姑息治疗资格且主要诊断为非癌症的人。两组在患病期间都得到了家庭和更广泛社交网络的良好支持。然而，他们的家庭护理者在护理和丧亲期间没有得到卫生服务机构的充分支持。
建议采用公共卫生方法来提供姑息和临终护理，通过让消费者积极参与护理的设计和提供来整合三级、初级和社区服务。因此，所建议的策略在许多其他国际环境中可能也具有相关性。
