Family caregivers provide 75% to 90% of home-based care for people who are near the end of life. Most are women. And like most home-based work undertaken by women, this work is undervalued, largely invisible, and unpaid. Our previous work – and that of others – has established that end of life caring takes a significant financial toll. Carers report bankruptcy, having to move house, and forgoing food and medication. So what financial supports are we providing them with as a society? This was the question that drove our recent analysis of financial caregiving supports across six countries: Australia, Canada, Ireland, Aotearoa New Zealand, the United Kingdom and the United States.
Answering this question is not as easy as you would suppose. Because we found ‘these data are not collated anywhere at a regional, national or international level’. This, in and of itself, is pretty astonishing. How are carers meant to know what supports are available when we spoke to people working within Ministries responsible for providing financial supports who didn’t have this information?
We therefore had to glean this information through interviews with patients, carers, health professionals, researchers, and policy makers. We also searched available ‘grey’ literature from government websites and other sources.
So what did we find?
Well, all countries have an existing or planned (United States) national strategy for family caregivers. And provide government-funded financial support for people with significant disability, including those with terminal illness or limited life expectancy. This support may indirectly benefit carers or in some cases be used by carers. Direct financial support for family carers is more variable but is provided as a government benefit in Australia, Canada, Ireland, New Zealand and the United Kingdom. Carer benefits are dependent on various eligibility criteria, including number of hours spent caring, income, employment status and relationship with the patient.
Canada is the only country which provides a payment specifically for end of life family caregivers. The Canadian Compassionate Care Benefit is paid to working carers (at 55% of earnings) who have to be away from work temporarily to care for a family member with less than 6 months to live. All countries provide some form of bereavement payment or support with paying funeral costs, but there is huge variation in provision. The majority of these payments are means tested or dependent on the financial status of the deceased or the caregiver.
Support related to employment is much more variable between countries and is not always enforced at a national level or as a legal requirement.
Support for out of pocket costs is provided to some extent in all six countries; however, none provide comprehensive coverage. For example, assistance with travel and accommodation is available, but generally only in countries with large rural or remote populations where residents have to travel long distances to access health care (e.g. Australia, Canada and New Zealand). Even in these cases, patients must meet certain conditions to qualify, for example, a minimum distance travelled, low income. In addition, the travel of a carer is not always included, and they may have to cover their own travel and/or accommodation costs.
This study is the first of its kind to make an international comparison of sources of financial support for end of life caregivers. We have identified several areas of concern. Firstly, there is a real lack of clarity around process. Secondly, there are limited opportunities for working carers to be supported while remaining in work. Last, but not least, there is considerable inequity in provision. Numerous barriers exist to the receipt of financial support and support is very unlikely to prevent significant financial hardship. There is significant potential for policymakers to learn from other countries’ experiences. Let’s hope they do (although we are not holding our breath).
For more information and a full copy of the paper contact Merryn: firstname.lastname@example.org