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

Background: Family members provide vital care at end-of-life, enabling patients to remain at home. Such informal care contributes significantly to the economy, whilst 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.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 5,271 people who registered the death of a relative to cancer during 1-16th May 2015. Data were collected on: decedent’s health and situation, care support given, financial expenditure resulting from care, carer well-being, and general background information.
Results: 1,504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last three months of the decedent’s life, contributing a median 69 hours 30 minutes of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last three months of the decedent’s life.

Conclusions: 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 dataset of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers’ contributions.