BACKGROUND Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. METHODS The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. RESULTS The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. CONCLUSIONS Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving.

中文翻译：

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姑息治疗中非正式护理的公平性和财务成本：一场重要的辩论。


背景技术 非正式护理人员是姑息护理劳动力的基础，也是临终护理的主要提供者。经济压力是许多护理人员最严重的担忧之一，临终护理的经济负担可能很重。方法 这篇批判性辩论论文的目的是回顾和批评关于非正式护理财务成本的一些关键证据，并描述这些成本如何代表姑息治疗中的公平问题。结果 临终时非正式护理的财务成本可能很高，包括护理时间成本、自付费用和就业相关成本。经济负担与患者和护理人员的一系列负面结果相关。有证据表明，护理的财务成本分配不公平。不平等的根源反映了影响获得专业姑息治疗的因素，包括诊断（癌症与非癌症）、社会经济地位、性别、文化和种族认同以及就业状况。交叉性的影响和多个风险因素的累积效应也是一个考虑因素。结论 不同群体的非正式临终关怀者在经济上普遍处于不利地位。解决这些以及其他临终关怀的决定因素是充分认识到护理人员价值的姑息治疗公共卫生方法的核心。需要进一步研究更深入地探索这些不平等领域，并更详细地了解影响财务负担的因素，以便采取下一步措施来实现这一愿望。 我们将通过最近成立的欧洲姑息治疗协会 (EAPC) 家庭护理财务成本工作组的工作来阐述本文中提出的结论和建议。