Dying well: the void between principle and practice in the care of people using substances

Authors

1.Dr. Gemma Yarwood (⚑ United Kingdom) 1

2.Prof. Sarah Galvani (⚑ United Kingdom) 1

3.Dr. Gary Witham (⚑ United Kingdom) 2

1. Manchester Met University, 2. Manchester Metropolitan University

Abstract

Background

Our global landscape is one of ageing populations where older people are presenting to substance use services with complex social and health care needs. In the UK, evidence shows hospital admission and death rates relating to substance use are increasingly dramatically among older age groups each year (Office for National Statistics, 2022a, 2022b). This paper will present the findings of a study that sought to develop and implement a new, co-produced, integrated model of care for people using substances approaching end of life. It will focus on the implications for substance use practice.

Methodology

This was a large, multi-strand, mixed methods study comprising a participatory approach to co-produce a new model of care, survey data and focus groups, individual interviews and case studies. This paper focusses on the findings from four practitioner focus groups (n=24) and 13 manager interviews drawn from our 10 partner agencies in a City in the North-West of England.

Findings

The practitioners’ focus groups revealed moral challenges due to the unmet service needs resulting from the lack of cross-agency working. Existing end-of-life care provision placed restrictions on people using substances, meaning they avoided such care. The managers’ interviews revealed that action was needed to support people to die with dignity including the development of routine questioning; integrated care pathways between agencies; specialist roles to support people and link services; substance use specific family support and staff training.

Conclusions and implications

There was clear agreement that dying well involved respecting a person’s choices, offering needs-led care, and minimising pain in the environment of their choosing. However, far greater attention is needed to the systems and structures that continue to marginalise people using substances from getting help towards the end of their lives.