In recent years, social care has undergone an important shift towards personalisation, giving people a say in the care they receive rather than offering a one-size-fits-all service. But despite major strides forward this tailored care does not always extend to the end of life.
Research shows that 70% of adults would like to be cared for and die in their own home. But the great majority of us still die in hospital; today, two out of 10 are able to fulfil this final wish.
Progress has certainly been made since the Department of Health's publication of an end-of-life care strategy in 2008, but recent reports show that this progress has been patchy across the country. Working with Home Group, the Local Government Information Unit surveyed 91 upper tier councils to ask them about their arrangements for end of life care. Our survey found:
- Six out of 10 councils thought that their existing end-of-life care arrangements would not be sufficient in future.
- Four out of 10 thought that health and wellbeing boards should lead on end-of-life care in future. However, only three out of 10 said that their shadow health and wellbeing boards had identified end-of-life care as a priority.
- Only a quarter of respondents said that housing departments were engaged with social care on end-of-life care issues, despite the often crucial role of housing in supporting quality of life outcomes.
Housing is an essential piece of the jigsaw when it comes to helping people die in their own homes. The Good Death project, established by Public Health North East and managed by Home Group, has brought together housing, health and social care services to make practical arrangements for residents to enable them to remain in their own homes for as long as possible at the end of life.
A support officer worked with 63 people over the course of nine months to make small adjustments to their living conditions. The interim results are encouraging: the project saw a 10% reduction in accident and emergency attendances, and a 55% cut in GP consultations among its clients. Participants also reported a 65% increase in their feeling of "being in control" over the course of the project, and a 74% increase in their quality of life.
There is more work to be done to ensure housing takes its place alongside health and social care when it comes to end-of-life care. But when it does, there will be benefits for the public purse and for our ability as individuals to reach the end of life with dignity and control.
Case study: Tom took part in the Good Death programme in 2011
I'm 38 years old, married, with a two-year-old daughter and I have terminal bone cancer. Cancer Connections, part of Macmillan cancer support, referred me to the Good Death project just after I was terminally diagnosed while in hospital with an infection.
The hospital wasn't willing to discharge me as my home had six leaks in the roof, making the property damp and unsuitable for me to live in, especially as I was very poorly at the time. I own my property but because I was unwell and without work, I was unable to keep up with repairs or pay someone else to undertake the works for me. All I wanted to do was go home and be with my wife and young daughter as I knew I had little time left.
Home Group worked with my family to access funding, including a grant from Macmillan, which meant the roof could be fixed and I could return home to my family. Without this support, I guess I would still be in the hospital.