Findings from an international study into the costs and outcomes of informal end of life care
have been published in BMC Medicine. The study found that in the UK, Ireland and the US, care provided by informal carers, meaning family and friends, accounted for more than half of total care costs in the last three months of life.
Researchers concluded that there was an urgent need in all three countries to improve community palliative care services and support people across the whole journey of care.
The study surveyed 767 carers in three countries about the last three months of life for the person they cared for. This is the first study of its kind and found:
- Costs to informal carers are larger than those to formal care services (health, social and voluntary combined) for people in the last three months of life.
- Poor quality home care was associated with greater burden to carers.
- If well supported informal carers can play an important role in providing care, and this can be done without detriment to them, providing that they are helped.
- Improving community palliative care and informal carer support should be a focus for future investment.
The study was led by researchers from the Cicely Saunders Institute at King’s College London in collaboration with King’s College Hospital Foundation Trust (UK), Trinity College Dublin (Ireland), Mater Misericordiae Hospital (Ireland), Beaumont Hospital (Ireland), University of Bristol (UK), University of California, San Francisco (USA) and Icahn School of Medicine at Mount Sinai (USA).
Professor Irene Higginson, who led the study, said:
“Family and friend carers do so much in helping people who need palliative care. Alongside being a wife, husband, partner, daughter, son, friend or other relation, our study shows the huge amount of practical help, advocacy, co-ordination and ‘being there’ that they provide. This costs more to society than do the formal care services, and when home care is of poor quality the burden on informal carers increases.”
Dr Steve Pantilat, from the University of California, San Francisco said:
“Family and friends provide tremendous help with the practical and emotional issues that people need as they approach the end of life. We know that this kind of help is priceless and unpaid. We learned that, if paid, the care provided by family and friends would cost more than all the formal care provided by the healthcare system. In addition, caregiving while seen as a privilege for many, also takes its toll on the caregiver. As a society we need to recognise and support these caregivers to keep them healthy and to allow them to continue to care for their loved ones. Palliative care services are among the ways that we can better support caregivers to improve the quality of life for them and the person they are caring for.”
Higginson IJ, Yi D. Johnston BM et al.
Associations between informal care costs, care quality, carer rewards, burden and subsequent grief:
the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).
BMC Med 18, 344 (2020). https://doi.org/10.1186/s12916-020-01768-7
The IARE 1 study is part of the BuildCARE programme, funded by Cicely Saunders International and The Atlantic Philanthropies.
This article is reprinted here with the kind permission of Cicely Saunders International:
‘Cicely Saunders International was established in 2002 by Dame Cicely Saunders, a founder trustee and its President. Dame Cicely is widely acknowledged as the founder of the modern hospice movement and is credited with “mentoring some of the great world leaders in this field” (Professor Eduardo Bruera). Our mission is to promote research to improve the care and treatment of all patients with progressive illness and to make high-quality palliative care available to everyone who needs it – be it in hospice, hospital or home. There is no other charity specifically concerned with carrying out work to identify and promote best practice in palliative care.’