Equity and the financial costs of informal caregiving in palliative care: a critical debate

Abstract

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.

Models of Integration of Specialized Palliative Care with Oncology

“…In low- and middle-income countries, where infrastructure and financial constraints are barriers to accessing both cancer treatments and palliative care, telehealth may facilitate access in a cost-effective manner [ 65 , 66 ]. Advanced cancer is associated with increased financial distress for patients and their family caregivers [ 67 , 68 ], and telehealth may provide a means of supporting early access to palliative care without adding to this burden. In particular, indirect costs may be minimized, including those associated with travel to the hospital, time away from work, or childcare costs for patients and caregivers.…”

Cutting through the intersections to care for caregivers: Secondary data analysis of a carers support service in Glasgow, Scotland

“…In the United Kingdom, caregivers report delays in needs assessments, regularly using their own money to buy necessary equipment, and most (69%) do not receive financial support from their local authority or health body (Carers UK, 2019). Furthermore, Gardiner et al (2016Gardiner et al ( , 2020 identified that these common financial strains increase significantly when caring for someone receiving palliative and end of life care. End-of-life caregiving often causes further stressful life events, such as moving to a new house or early retirement to cope with the increased care requirements (Gardiner et al, 2020).…”

“…Furthermore, Gardiner et al (2016Gardiner et al ( , 2020 identified that these common financial strains increase significantly when caring for someone receiving palliative and end of life care. End-of-life caregiving often causes further stressful life events, such as moving to a new house or early retirement to cope with the increased care requirements (Gardiner et al, 2020). However, the financial risks associated with the role for working age women extend beyond the caregiver, because women with children are more likely to take on caring responsibilities (Young & Grundy, 2008), and women are far more likely to be single parents (OECD, 2018b).…”

“The system is well intentioned, but complicated and fallible” interviews with caregivers and decision makers about palliative care in Canada

“…Many caregivers have found satisfaction in this role [15][16][17] even though it has often been accompanied by stress and exhaustion [18,19]. Caring for someone with a serious illness can be challenging as caregivers often make personal sacrifices (e.g., financial, employment, time) [20] to continue caregiving, which could lead to feelings of resentment and caregiver burden [21]. Caregiver burden has been associated with a number of negative health outcomes for caregivers, including worsening health, decreased quality of life, and increased mortality risk [22,23].…”