This good practice guidance draws from a range of sources including international research evidence, the experiences of people who use(d) substances who are at the end of their lives, and the family members, friends and carers of those people. It also draws on professionals’ experiences including paid and volunteer professionals who work with people in a range of settings including hospices, community health and social care services, substance use services, as well as specialists leading work in this area within their own disciplines, for example, general practice medicine, hepatology, social work.
To our knowledge, it is the first guide of its kind in this newly developing field. Work has been developed by St Mungo’s, Marie Curie and the Care Quality Commission (CQC) to examine the end of life care needs of other disadvantaged groups of people, for example, people who are homeless, people from BAME communities and LGBTQ+ groups. However, this is the only work to explore substance use directly and to consider the impacts that problematic substance use (past and present) has upon people’s lives and those of their families, friends and carers. This guide attempts to bring perceived good practice to individuals living and dying with problematic substance use and to the professionals and families who support them. It is not exhaustive but offers some suggestions and areas for practice development and reflection.
The goal of palliative and end of life care is to give the person the best quality of life possible towards the end of their life, and to give them, and their family and friends, the best possible care experience of dying and death. The World Health Organization (WHO) defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual’.
However, the problem for many people who use(d) substances and those caring for them is that their end of life is often only identified in the last few weeks or days of life. This means that, for both health and social care staff and family/friends, care planning and opportunities to talk meaningfully with the person approaching death may be extremely limited. Such conversations can be all the more difficult for families if relationships have become strained or fractured – which is where practitioners working within substance use services may be able to help.