In many ways, the desire to pass our final moments at home is a basic human need. But the reality of making it happen is more complicated. To coincide with Chartered Institute of Housing Scotland’s Housing Festival 2023, Ruth Glassborow, Director of Improvement for Healthcare Improvement Scotland, discusses the need for integration between services to ensure that end-of-life care is delivered effectively for everyone who desires it.
End of life is unavoidable for us all – and although death is often called the great leveller, what has become increasingly clear over recent years is the growing body of evidence around inequalities at end of life, especially with regard to our basic human need to experience our end-of-life journey at home, hopefully surrounded by family and loved ones.
Further, being able to safely care for people at home not only meets the wishes of the people we care for; it also aids us in reducing the significant pressures on our acute hospitals.
When we think of good end-of-life care at home, most of us are aware of the importance of health and social care staff who have the time and skills to support people in their home environment. However, it also requires adequate housing and differences in the quality of peoples housing environment can make a big difference on the both the viability and quality of end-of-life care at home. Imagine you live on the 19th floor of a tower block where the lift is broken and you can’t afford to turn the heating on in the day time, let alone pay the electricity bills attached to the equipment you need to receive care at home. This will inevitably impact on the viability of you receiving end-of-life care at home.
Integration and collaboration
The work of the Dying in the Margins study by the University of Glasgow examines the barriers to, and experiences of, home dying for people experiencing poverty and deprivation in the UK. The images and stories really drive home how important housing conditions are at any time of a person’s life, but particularly at end of life when certain adaptations are required.
Hearing and seeing the practical barriers that people are experiencing has left a lasting impact on my understanding of the importance of this issue.Their work has helped me to realise that, if we want a good end-of-life to be equally available to all, we must pay more attention to integration and collaborative working between health, care and housing.
So, building on the insights provided through Dying in the Margins, Healthcare Improvement Scotland is currently progressing work to better understand the impact of socio-economic status on access to palliative care in the home and to understand whether people living in the most deprived areas of Scotland are able to die in their homes. We will then ensure this evidence informs collaborative working between health, care and housing colleagues to enable individuals to receive end-of-life care at home, no matter where they live.
It is important to highlight that we are not starting from scratch here, there is already much positive work to build on including many great examples of where housing, health and care have collaborated to enhance patient outcomes.
For example, the Housing and Dementia Practice Framework which was co-developed and co-designed by Healthcare Improvement Scotland, Chartered Institute for Housing, Alzheimer Scotland, and people with lived and living experience; assists housing organisations to improve what they are doing to support people living with dementia and their carers.
Another example is testing embedding community link workers within deep-end GP practices in Scotland to support people to live well through strengthening connections between community resources, including housing and primary care.
And then there are all the excellent housing support services that work in effective partnership with local health and care services to enable people to live as independently as possible in the community.
More work for us to do
So we know housing, health and care services can collaborate effectively in helping to improve the lives of people, and improve their access to care. However, there is more work for us to do together if we are to ensure there is equality and choice in how everyone chooses to pass their final moments. No-one should be prevented from dying at home surrounded by their family and loved ones because they live on the 19th floor of a tower block with a broken lift or because they can’t afford the electricity bill attached to the equipment they need to die at home. But we won’t get to this vision of equality without greater collaboration and integration will help us to achieve this important goal.
Ruth Glassborow is Director of Improvement for Healthcare Improvement Scotland.