The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures

Abstract

Background:Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients’ preferences and government policy. However, the value of care-givers’ contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers’ contribution to end-of-life care.Aim:The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care.Design:A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1–16 May 2015. Data were collected on decedents’ health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information.Results:In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent’s life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent’s life.Conclusion:Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers’ contributions.

The direct and indirect financial costs of informal cancer care: A scoping review

“…Five studies reported caregivers' OOPCs, which most frequently included the cost of care supplies, medication, formal help (e.g. professional care or paid domestic help) and travel expenses, although each study included different OOPCs (Table ; Guerriere et al, ; Hanly, Céilleachair, Skally, O'Leary, Kapur, et al, ; Lauzier et al, ; Rowland, Hanratty, Pilling, van den Berg, & Grande, ; Van Houtven et al, ). Two studies found that OOPCs make up 7%–13% of total caregiver costs in studies that included OOPCs, care time and work time costs, depending on the phase of disease (Hanly, Céilleachair, Skally, O'Leary, Kapur, et al, ; Van Houtven et al, ).…”

“…The OOPCs most often reported by caregivers were related to travel expenses, household costs (e.g. bills) and medication or care supplies (Guerriere et al, ; Hanly, Céilleachair, Skally, O'Leary, Kapur, et al, ; Rowland, Hanratty, Pilling, Berg, & Grande, ). Four studies provided detailed information regarding the value of individual OOPCs, which showed that in general, travel costs and formal care costs were the most expensive OOPCs, although this varied across studies (Guerriere et al, ; Hanly, Céilleachair, Skally, O'Leary, Kapur, et al, ; Rowland et al, ; Van Houtven et al, ).…”

What role do Death Doulas play in end‐of‐life care? A systematic review

“…This model incorporates a supportive role into mainstream palliative care, rather than a model where the support role is independent to palliative care and perhaps is one that could be considered a compromise in how people at the end of life are supported. With costs of care already high for individuals and families at the end of life (Rowland, Hanratty, Pilling, van den Berg, & Grande, ), a death doula, unless in a voluntary role, is thereby only a viable option for those who can afford them.…”

Current state of the economics of palliative and end-of-life care: A clinical view

“…An under-examined issue in economics of palliative care is the family caregiver perspective, addressed by articles from Rowland et al, 5 Dzingina et al 6 and Brick et al 7 While studies have looked in some detail at system costs, and in particular recorded a consistent pattern of cost-savings with respect to hospital costs, we know that hospital inpatients represent a minority of people with palliative care need and that formal utilisation of services does not fully reflect the cost of caring for someone with serious illness. Thus, the dataset compiled by Rowland and colleagues indicating that in England caregivers spend an average of 10 h/day, as well as substantial amounts of their own money, in end-of-life cancer care gives food for thought on how health systems and societies can provide care in an equitable and fair manner.…”