Click here to learn about the Department for Business and Trade Consultation into employment support for unpaid carers.
Up to 750,000 people in the UK are providing unpaid care to someone approaching the end of life . Whilst end of life unpaid care can be hugely rewarding, it also comes with profound challenges and caring for someone in the last months or weeks of life can be physically and emotionally exhausting. Evidence shows us that end of life caring can lead to a wide range of negative impacts including worse physical health, psychological and emotional problems, social and financial challenges and spiritual distress.
One of the most important, but often unrecognised, impacts of end of life caring is on a carer’s employment. Increasing numbers of employees find themselves taking on a caring role whilst in paid employment and we expect these numbers to rise over coming years due to ageing populations internationally, and planned increases in statutory retirement/pension ages.
Combining end of life caring and paid employment
Research from the University of Sheffield has highlighted some of the changes that need to be made to accommodate end of life caregiving alongside paid work – these include reducing working hours, changing working patterns, changing jobs or giving up work altogether (either temporarily or permanently). Having to give up employment entirely has severe consequences and can erode a person’s sense of self-worth and confidence, leading to a sense of dependency and difficulties returning to the labour market. As one of our study participants noted:
To go back to work, after spending 3 years caring for Mam, full-time. You’ve lost your place in society, and in the work place. And unless you experience it, you wouldn’t understand- I would never have thought this…you’ve lost your confidence.
The Carer’s Leave Act 2023 was an important step in providing improved support for working carers in the UK; under the Act employees can access five days (pro rata) unpaid carer’s leave each year. Whilst this was a landmark piece of legislation, it falls short of providing comprehensive support for working end of life carers. Leave which is unpaid is likely to exacerbate the financial burden of caring, and five days of permitted leave is a mere fraction of the care that is required at the end of life.
What can we learn from other countries? An example from Canada
Various other countries have introduced policies and benefits to support working end of life carers, and there is much potential for UK policymakers to learn from international exemplars and best practice. One such example comes from Canada, where in 2004 they introduced a federally legislated benefit called the Canadian Compassionate Care Benefit (CCB). The CCB provides financial assistance to unpaid caregivers, allowing them to take up to six months away from work to provide care to someone in the last six months of life. Caregivers receive 55% of their earnings up to a maximum weekly amount ($729 a week in 2026) and in the majority of Canadian provinces, a carer’s job is protected whilst they are on leave. The CCB is funded through Employment Insurance (EI) contributions, similar to National Insurance contributions in the UK, and is available to any Canadian who has made sufficient EI contributions over their working life. One of the key advantages of the CCB is its flexibility – for example, the benefit can be split between two or more carers, and there is a ‘pause and return’ option allowing carers to divide the leave into blocks, returning to work in between periods of caring.
In 2023 we conducted research to explore the implementation and impact of the CCB and assess its potential transferability to comparable countries such as the UK. In Canada, the CCB is viewed as an important support for carers, and a number of positive benefits have been identified. These include enabling patients to be cared for and to die at home; this aligns with the preferences of most people and also significantly reduces health care costs. We also found the CCB can reduce stress and anxiety amongst carers and improve wellbeing for patients. Crucially, carers benefit from the job security of knowing that their employment is protected, providing financial security and also legitimising caregiving as a ‘job’. For many carers the CCB was perceived as a ‘lifeline’.
The CCB is not perfect, and problems exist which mean uptake of the CCB is not as extensive as initially hoped. For example, many carers are unable to live on a reduced income (the CCB provides only 55% of a carer’s income) – this is a particular barrier to those already facing financial hardship. In addition, there is little evidence on the cost effectiveness of the CCB (i.e. the extent to which the federal cost of the benefit is offset by savings in health and social care) and this remains a key barrier to wider adoption of similar benefits internationally. Despite this, the CCB provides one of the best examples internationally of a potentially transformative public health intervention for working end of life carers. Whilst the CCB was conceived specifically for the Canadian context, similarities with the UK, notably in employment based welfare contributions, means it may be feasible to adopt a similar benefit within our country.
Enacting change in the UK
Caregiver benefits need to adapt to the changing demographic of end of life carers in the UK. Demand for unpaid care at the end of life is increasing and policy change is urgently required in order to support those carers who are employed during the caregiving period. The recent announcement of a government consultation on Carers Leave provides an important opportunity to influence policy change, and it is imperative that end of life caregiving should be central to evolving policy change in this area.
References
Gardiner C., Taylor B., Goodwin H., Robinson J. & Gott M. (2022) Employment and family caregiving in palliative care: An international qualitative study. Palliative Medicine. 36(6):986-993. doi:10.1177/02692163221089134.
Gardiner C. & Stajduhar K. (2025) Internationally transferable policy solutions for supporting employed end of life family caregivers: Canadian Compassionate Care Benefit. Progress in Palliative Care. 2025; 1-12. doi:10.1080/09699260.2025.2524231.
Gardiner C., Juet A., Webb E.J. & Stone J. (2025). Characteristics and population estimates of unpaid end of life carers: An observational study. Palliative Medicine Dec;39(10):1091-1098. doi: 10.1177/02692163251366090.
About the Author
Clare Gardiner is a professor of palliative care at the School of Allied Health Professionals, Nursing & Midwifery. She leads the Sheffield Palliative and End of Life Care Research Group and is Co-Director of the Mesothelioma UK Research Centre. Clare has over 15 years of experience in palliative care research and has published over 100 papers in peer-reviewed journals.
