New report explores death, dying and financial hardship

Our new report, '"It's a nightmare scenario": death, dying and financial hardship', is based on first-hand research with people who have lived experience of financial hardship at the end of life. Published today, it aims to ensure their experiences are heard by decision-makers across the UK. 

The report outlines how financial hardship affects experiences of death, dying and bereavement. It then sets out recommendations for how governments, health systems and services can make improvements.

A 2022 report by Marie Curie found that, in the UK, an estimated 90,000 people die in poverty each year. For these people to have a good death, their significant financial and social needs must be treated as seriously as their clinical ones.

However, our report finds that the current support available is inadequate, inaccessible and inconsistent. Our society does little to stop people with a life-limiting illness, and their loved ones, from falling into financial hardship. And once they have, the welfare state is not there to catch them.

Findings

We had conversations with people who have lived experience of financial hardship at the end of life, and their loved ones, to inform this report. We also spoke to professionals working in health, care and financial support. 

From these discussions we found that: 

• There is a significant mental and physical toll to facing death, dying and bereavement alongside financial hardship.
• There are significant visible and hidden costs for people experiencing financial hardship at the end of life. These include transport to and from care services, energy bills for medical devices and funerals.
• Individuals and carers often fall into financial hardship as a result of a terminal diagnosis.
• The complexity of the welfare system can make it hard to navigate, understand or access.
• Availability of advice and support is inconsistent and reliant on the voluntary sector. This leads to a 'postcode lottery' in support.

Recommendations

The report makes recommendations to governments, health systems and services to improve the experience of people facing financial hardship at the end of life, including:

• Governments should introduce legislation that safeguards against people falling into financial hardship before or after diagnosis. This should include expanding eligibility criteria and raising the amount of financial support available through welfare schemes. 
• Minimum standards of welfare provision should be introduced by governments and health systems. This provision should include monetary support and access to advice.
• Health and care professionals should ask patients about money worries at key trigger points and signpost them to local financial support services.
• Government departments with oversight of housing should reform housing legislation to stop people being penalised for losing a loved one.
• Local health systems and providers should improve physical access to their services. This can be done by improving access to transport or, in the case of hospices, providing outpatient services.
• Primary and secondary health and care services should develop close relationships, and collaborate, with local voluntary sector providers, including hospices.