Jeff Round, Health Economics at the University of Bristol, UK, (and formerly at the Marie Curie Palliative Care Research Unit at University College London), explains the background to his longer research article selected as ‘Editor’s choice’ in the December issue of Palliative Medicine.
My interests in the economics of end of life and palliative care began when I joined the Marie Curie Palliative Care Research Unit at University College London in 2010. I quickly learned that there was much that economists didn’t yet know about end-of-life care. One of the areas where evidence is sparse is in our understanding of the ways in which care is produced for people at the end of life and how much it costs society to provide this care. One of the key areas of interest for me with respect to care production was that of informal caregiving, (1) which has become a focus of my PhD.
As part of the research for the study reported in Palliative Medicine, we conducted a systematic review looking for studies that estimate the cost of providing care at the end of life. Four studies were included, but none of them considered the role of informal caregivers or the value of the care they provide (the review is reported in more detail in the supplementary material to the full paper).
When designing our cost of care study, we decided that it was important to include the cost of informal caregiving. Those who provide informal caregiving make a vital contribution to the overall care people receive, often at great expense to themselves financially. Carers often make direct payments for certain forms of care, for modifications to patients’ homes or for transport to and from hospital appointments.2 There are also significant indirect costs – elsewhere in my PhD I show that people who provide care are less likely to be in work, to work fewer hours when they are in work and to have a lower household income if they provide care.
Owing to the limited data available on informal caregiving, we used a relatively narrow approach to estimating costs (a very lengthy blog post could be written on the quality of data in end-of-life care research). We focused on two key costs relating to the provision of informal care – earnings forgone by caregivers and the cost of replacing informal care with formal costs. We found a mean cost of over £3,000 per care recipient, (2) though this is likely to be an underestimate as we were not able to include the direct costs to caregivers.
As a society, we need to know more about the role of informal caregiving. It is an important part of the total care many people receive and it acts as a de facto subsidy to state provision of care. As the population ages and care needs increase, the burden will increasingly fall on informal caregivers and we will need policies that recognise this.
1. See the recent editorial in Palliative Medicine, Bringing the economic cost of informal caregiving into focus Nikki McCaffrey, Brian Cassel and Joanna Coast. Palliat Med, first published on October 22, 2015.
2. How much does it cost to care for survivors of colorectal cancer? Caregiver’s time, travel and out-of-pocket costs. P Hanly, AÓ Céilleachair, M Skally, E O’Leary, K Kapur, P Fitzpatrick, A Staines, L Sharp. Supportive Care in Cancer. September 2013, Volume 21, Issue 9, pp 2583-2592. DOI:10.1007/s00520-013-1834-3.
Download a free copy of the full article
This post relates to a longer article, ‘Estimating the cost of caring for people with cancer at the end of life: A modelling study’ by Jeff Round, Louise Jones and Steve Morris published in Palliat Med December 2015 vol. 29 (10) 899-907. Published online before print 21 July 2015, doi: 10.1177/02692 16315595203.
EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (If you need to register or login to download this paper please follow the instructions in the top right-hand corner of EAPC home page and scroll down to the article). Click here to view other EAPC-originated papers.
- Health Economics at the University of Bristol.
- Marie Curie Palliative Care Research Unit at University College London.
Call for papers for special issue of Palliative Medicine on Economics of Palliative and End of Life Care – deadline 18 April 2016
Read more in the post by Prof Joanna Coast, Dr Nikki McCaffrey and Dr Brian Cassel in the EAPC Blog or download more information here.