How communities can help people living with a terminal illness

With more people dying each year in Wales and most people wanting to die in their own homes, how communities can help people living with a terminal illness at the end of their lives will be discussed by Professor Allan Kellehear as he delivers the second of Marie Curie Cymru’s lecture series, Making sense of end of life care, tomorrow (Tuesday 28^th February).  

He will explore the Compassionate Community approach to end of life care at the Life Sciences Hub in Cardiff Bay. 

Professor Kellehear will be joined after the lecture for a panel discussion by Tracy Cooper, Chief Executive of Public Health Wales Jo Parry, Senior Volunteering Development Manager, Marie Curie.  The lecture is being sponsored by Lord Dafydd Elis Thomas AM. 

Marie Curie, which provides care and support to people living with a terminal illness and their families, wants to ensure that everyone has access to the care and support they need at such at time.

 Care and support for people at the end of their lives is a complex issue. Yet it is one that all of us will face – in our own lives and in the lives of those close to us, as we deal with concerns about the care and support they are getting or might get.

As part of the lecture, Professor Kellehear, who is currently Professor of End of Life Care at the University of Bradford, will discuss how a major policy and practice gap impacts hundreds of thousands directly affected by death and dying every year. 

In Wales, 32,000 people die each year with between 160,000 and a third of a million people directly affected by death and dying. 

Under-recognised in policies about healthy ageing or dementia, the experience of bereavement or long-term caregiving is that many of these people are vulnerable to serious additional problems.  Issues such as sudden death, suicide, loneliness and social isolation, anxiety, depression, and a diversity of social problems from stigma to job loss. 

The compassionate community approach, and within this the Compassionate Cities program, were developed to address this. 

Explaining Compassionate Cities, Professor Kellehear said: “Compassionate Cities recognize the central role that mortality plays in the minds, behaviors and social meanings that people develop when confronted with experiences of all serious illness, ageing, caregiving and loss. 

“They complement the efforts of all health promotion activities in national communities. The practice methodologies are essentially the same – i.e. civic engagement and community development, public education, and ecological changes to the social and policy environment. 

“Compassionate Cities are communities that squarely recognize the major but under-recognized, the least spoken about, and the most overlooked human experiences in all communities – serious illness, ageing, dying, caregiving and loss – and the need to recognize that even these populations have a right to health and wellbeing and strategies to address the additional morbidities and mortalities associated with these everyday experiences.”

Simon Jones, Director of Policy and Public Affairs at Marie Curie, said: “There is growing interest in the compassionate community approach to end of life care.  It gives people who are dying what they want and it will significantly help our health services meet the care demands of a growing number of older people in Wales.  To make it work everyone, from employers to neighbours, from teachers to carers need to look at how they support people in their communities at the end of their lives.”