Death, dying and devolution: the challenge ahead for policymakers

Dr Kate Woodthorpe is Senior Lecturer in Sociology at the University of Bath's Department of Social & Policy Sciences. This post draws in part on her recent IPR Policy Brief Death, Dying and Devolution.

The devolution of policy and services associated with death and dying provides a milestone opportunity to revise, innovate and modernise, to ensure that policy and service provision is sustainable as the UK death rate rises over the next 20 years.

First and foremost, to do this we need to establish death as a legitimate public policy issue requiring attention and response. Death is a costly business – emotionally, financially, practically and organisationally:

• Over half a million people currently die in the UK each year and with four to six people estimated to be significantly impacted upon by a death; that means there are over 2 million people bereaved of someone every single year.
• One million people are providing care for someone with a terminal illness, but only one in six employers have poli­cies in place to support this population.
• At the same time, one in four people who need palliative care miss out. A further 49,000 children and their families are dealing with a life-limiting or life-threatening condition and 6,500 are waiting for an organ transplant.
• 400,000 people are living in care homes; a quarter will die there every year. It costs over £1 billion a year to run charitable hospices across the country, providing end of life care for 200,000 people.
• After a death 58% of people bereaved of a partner report lower levels of household or disposable income. As space for burial decreas­es and cremation costs rise, 45,000 annually seek financial assistance from the state – meaning that just under 10% of all deaths result in requests for funeral expenses support.

Despite these figures policy responses (and corresponding academic analyses) have been limited, slow or non-existent, lacking in joined-up thinking, hampered by limited data collection, and poorly planned. Such a lack of attention has meant that public policy on death has evolved piecemeal over decades and in silos, leading to significant differences in the quality and quan­tity of policy and guidance available.

There has been a further disregard for the knock-on effects of changes (or lack of changes) to policy and practice that currently straddle departments and governments, such as managing child and adult palliative care services; the death registration system and delays to funerals; changes to organ donation legislation; Funeral Expenses Payments and public health funerals; and burial space availability and crematorium capacity. Beyond the resource implications of these knock-on effects there are also unresolved competing priorities within policy areas, for example freeing up burial space availability or conserving the cultural value of cemeteries.

Such negligence reflects the concealment of death from personal, public and political life. It has resulted in (and from) an everyday knowledge gap as to how we plan for death, how we care for those who are dying, and how we overcome resource challenges associated with dying, bereavement and bodily disposal. We, as individuals, organisations and a country are simply not accustomed to dealing with the implications of dying, death and bereavement on a regular basis.

As a consequence we are poorly prepared for death and its social and economic consequences.

Devolution provides a milestone opportunity to redress this, as the nations and regions have opportunity to revise entitlements, organisational constraints, policy overlaps and crossovers, and resourcing issues.

Certainly, as national and regional devolution of policy and services gathers pace, variance in policy responses will become increasingly obvious as nations and regional areas become accountable for planning and delivering (eg) palliative care, organ transplantation, financial support for funerals, and body disposal. While this represents an exciting opportunity to innovate and modernise policy and practice, it will inevitably intensify existing problems in nations and regions that fail to ensure that their services are robust, sustainable and financially sound.

At the core of the devolution of policy related to death and dying is the vital importance that all those tasked with designing, implementing and delivering policy and services in relation to death and dying are future-proofing their policy areas, and focused on the next 10-20 years when the death rate across the UK will increase.

The IPR Policy Brief on Death, Dying and Devolution launched on 12^th September aims to raise the profile of death, dying and bereavement as a significant policy issue, explore the impact of devolution and make cases for change in the policy areas. Commissioned by the Institute for Policy Research at the University of Bath, the brief aims to set the policy scene and agenda for the future, addressing and demonstrating both where there are risks but also the potential for improved policy and services associated with death.

You can read the policy brief in full here.