Death is a difficult subject. We don’t like to think about it, talk about it, plan for it or campaign about it. Widely acknowledged to be as inevitable as taxes, it is tax, not death, which gets all the political attention.
In the UK, policy and services associated with death, dying and bereavement have been allowed to drift for decades. This is partly down to the country’s ageing population – many members of different generations have no firsthand experience of death. They have not had to deal with its emotional, social, practical and financial consequences – unlike those who remember wartime Britain, for example.
This knowledge gap translates into a serious lack of support for those who are dying or bereaved. There simply has not been the high pressure demand to force change.
A newly published brief, Death, Dying and Devolution, from the Institute for Policy Research, shows there is much to do. Improvements are urgently required to ensure sustainable burial and cremation provision, to better support older bereaved people and carers, to conserve historic cemeteries, and to properly fund children’s’ palliative care.
The review also demonstrates the need for systematic data generation to understand trends across nations and regions – to encourage practical improvements which are underpinned by robust evidence and analysis.
Over 500,000 people die in the UK every year. This number is predicted to rise by around 15-20% in the next two decades. With at least four people estimated to be affected by every death, the number of living people feeling the impact every year will rise to over 3m.
If trends continue, around half of these 600,000 or so deaths will occur in hospitals, and a quarter in care homes. Both kinds of establishment are already showing strain when it comes to providing high quality, accessible end of life care.
At the same time, the number of children surviving childbirth and living with life threatening and life limiting conditions continues to rise. This is a situation which necessitates well resourced end-of-life care and support for their families.
The brief highlights more worrying statistics: a further 1m people are providing care for someone with terminal illness, but only one in six employers have policies in place to support them. After a death, 58% of people bereaved of a partner report lower levels of household or disposable income. Around one in ten deaths results in claims to the state for financial support for the funeral.
Given the number of people affected, it seems astonishing that the neglect of public policy towards death has been allowed to continue. One thing is for sure – when it comes to raising the profile of death as a public policy issue, there is a real need for those who are dying and bereaved to be given opportunity to speak in an area that is not combative, and to be supported by others petitioning on their behalf.
It can be challenging to campaign on matters of death. After all, the dead cannot speak, and those who are dying or bereaved have other pressing concerns, or are simply exhausted. Previous research I have undertaken indicates that many people simply do not want to engage with death for fear of tempting fate, leading to a general lack of emotional, practical and financial preparation for the inevitable. Two thirds of the UK population do not have a will.
Last rights
All of this points to a clear need for policymakers, the third sector and commercial organisations to collectively provide services and policies that are coherent, agile, responsive and future proofed, to ensure that they meet the varying demands of different demographic groups.
With the anticipated rise in the death rate, it must be hoped that the current hands-off approach will no longer be the de facto norm within political circles.
Policy needs to make use of expertise and evidence from across all sectors, to ensure that dying and bereaved people experience continuous, well-resourced services at such a difficult time of life.
Disorganised or under-resourced end of life care, a lack of support for families and bereaved people, and issues with funeral costs and burial and cremation provision should not be compounding an already challenging time.
It is surely within the grasp of organisations and policymakers to ensure that they do not contribute to the plight of people at their most vulnerable. And the time to act is now – before services come under ever greater demand.