Financial support at the end of life: an international comparison – Clare Gardiner,

The  following Executive Summary is taken from Clare’s report with kind permission. The full report can be found here or at the bottom of this article. 

Executive summary

Family and informal caregivers are often described as the foundation of the palliative care workforce. However, caring for a family member or friend who is approaching the end of life can be challenging.

For carers in paid work, juggling a caring role with the pressures of employment can be very difficult.

In the UK there is little support for working end of life carers, and policy regarding time away from work is vague and ill-defined.

In 2004 Canada introduced a federal benefit called the Compassionate Care Benefit (CCB) to support end of life carers who are in paid employment. The CCB provides financial assistance to informal caregivers, allowing them to take up to six months away from work to provide care to someone approaching end of life.

The CCB may be transferable to other high income countries such as the UK.

The aim of this Churchill Fellowship was to explore the implementation and impact of the Canadian Compassionate Care Benefit (CCB) and assess the transferability of the CCB to other high income countries such as the UK.

The objectives were:

(1) establish the impact of the CCB;

(2) explore the economic cost of the CCB to the Canadian state;

(3) explore the transferability of the CCB to other high income countries, including the UK;

(4) use the knowledge obtained to develop recommendations to support UK carers.

The Fellowship was conducted at The University of Victoria, British Columbia, Canada working alongside Prof Kelli Stajduhar and the Palliative Approaches to Care in Aging and Community Health team.

The research project was conducted between 15th May and 23rd June 2023 and involved two phases: (1) scoping literature review and documentary analysis; (2) qualitative interviews with 14 stakeholders who had expertise around the CCB.

Data from the scoping review and interviews were synthesised to generate seven key themes:

(1) socio-political context leading to the implementation of the CCB;

(2) evolution of policy scope and changes to the CCB over time;

(3) what has worked well in the implementation of the CCB;

(4) cost and cost-effectiveness of the CCB;

(5) positive impacts on patient/carer/labour market;

(6) perceived problems with the CCB;

(7) transferability of the CCB to other high income countries such as the UK.

The results highlight the importance of a receptive socio-political landscape in driving change, noting that advocacy alone is insufficient without a political incentive, and individual champions are key to negotiating policy prioritisation.

The scope of the CCB has evolved considerably over the 10 years since it was implemented, and much of this change is underpinned by research evidence.

However, the lack of evidence on cost-effectiveness remains a challenge for those seeking to expand the benefit further. Whilst the CCB is overwhelmingly viewed as an important support for carers, a number of challenges with the CCB remain and need to be addressed to improve access and ensure equity.

The CCB was conceived and implemented specifically for the Canadian context; however, there is significant potential for it to be adapted and adopted in other high income countries including the UK, to provide improved support for working end of life caregivers.

The recommendations from the study are: (i) conduct further research on the cost and cost effectiveness of the CCB, in particular establishing if the financial cost of the CCB is offset by carer contributions in other areas; (ii) conduct further research to highlight gaps and opportunities within the UK welfare and benefits system, specifically for carers who are in employment; (iii) establish a UK working group to consider changes to the UK Carer’s Allowance to be inclusive of employed caregivers; (iv) work with UK employers and business leaders to explore the role of employers in providing compassionate leave for employed carers; (v) publish the findings from this report in a suitable peer review journal.