Abstract
BackgroundInformal 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.MethodsThe 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.ResultsThe 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.ConclusionsVarious 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.
Highlights
Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care [4]; it is estimated that they provide 75–90% of homebased care for people who are near the end of life
Specialist palliative care is skewed towards those with cancer; is often poorly delivered in care-home settings; and is less available for older people, for those living in areas of social deprivation, for people from ethnic minority backgrounds, and for those with enduring mental illness [13, 14]. These are notable areas of concern, and we argue that the financial costs of caregiving should be recognised alongside other well recognised inequities in palliative care, and as a key social determinant of end of life experience
Costs can be broadly categorised into three main areas: work related costs, carer time costs and out-of-pocket costs
Summary
Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. One of the key issues in measuring these costs is how to capture the economic value of informal caregivers ( called family caregivers) In this context, informal/family caregivers are those in a close supportive relationship with a patient, who share in the illness experience and undertake vital care work and emotional management. Demand for informal care is rising as rapidly ageing populations mean that people are living longer with more complex health and social palliative care needs [5] In this context palliative care refers to the care of those with life threatening illness, it is acknowledged that many of the issues identified here will apply to carers of those with chronic conditions
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