End of life care for people with alcohol and other drug problems: an exploratory study

Abstract

IntroductionThe problematic use of substances is linked to many forms of chronic and life threatening conditions, the majority of which affect people in later life. In part as a consequence of population ageing and with evidence suggesting that older people’s substance use is increasing, this complex and heterogeneous group is growing. Thus greater numbers will require palliative care and present new challenges to end of life services. This study explores the nature and extent of these changes and the needs of service users and providers.Aim(s) and method(s)There are five strands to the study; evidence for practice: an international review via a Rapid Evidence Assessment (REA), establishing what is known about prevalence and incidence via a secondary analysis of qualitative and quantitative datasets, exploration of the experiences of people with chronic or terminal illness and a similarly for the experiences of family members and carers, and professionals’ perspectives collected via key informant interviews.ResultsThe study began in May 2016 and we will have preliminary findings for presentation from the REA, the quantitative dataset analysis, and the secondary analysis of carer/family study data by October 2016.Conclusion(s)This is a key and under-researched area of palliative and end of life care, and an area which we already know results in considerable challenges for both end of life service providers and also for substance use services. Little is known about what may already be in place and still less about the composition and scale of the relevant populations.ReferencesGalvani S, Hutchinson A, Dance C. Identifying and assessing substance use: findings from a national survey of social work and social care professionals.Br J Social Work2014;44(7):1895–1913Harling M, Overy C, Beckham G,et al. Addressing negative attitudes toward substance use in nursing: A peer-led approach in nurse education.Drugs Alcohol Today2006;62):38–41Reisfield GM, Paulian GD, Wilson GR. Substance use disorders in the palliative care patient.J Palliat Med2009;12(5):475Wadd S, Papadopoulos C. Drinking behaviour and alcohol-related harm amongst older adults: analysis of existing UK datasets.BMC Res Notes2014;7(1):741

End of life care for people with alcohol and drug problems: Findings from a Rapid Evidence Assessment

“…Research should also include the experiences, views and attitudes of social and healthcare professionals in responding to the overlapping issues of substance use and palliative and end of life conditions. This could include concerns about potential safety risks for outreach or community‐based practice in particular, as highlighted by Galvani, Dance, and Wright () in their study of hospice and specialist substance use staff. Lastly, there was limited evidence found in relation to alcohol (for example, problematic alcohol consumption associated with liver cirrhosis specifically at the end of life).…”

“…This Rapid Evidence Assessment (REA) aimed to explore what is already known about responses to end of life care need for people using substance and identify gaps in the evidence base. It forms one part of a wider programme of research on end of life care for people with problematic substance use (Galvani, Tetley, et al, ).…”

An ethical exploration of the narratives surrounding substance use and pain management at the end of life: a discussion paper

“…These reflections are based on a wider unique project funded by (National Lottery Community Fund) examining end-of-life care for people who use substances. 1 This theoretical exploration stems from data generated from five strands of the project which included a rapid evidence assessment (REA), 2 interviews with individuals with palliative care needs who use substances. 3 Interviews were also conducted to explore family, carer and friends' experiences of people using substances at the end of life, 4 to examine practitioners' perspectives 5 and to gain key informant insights into the issues pertinent to this population.…”

Offering the best death possible: supporting people using substances at the end of life

“…Given the lack of international evidence on this topic, I highlight three key recommendations for practice from our multi‐strand study exploring a range of perspectives on care for people using substances at the end of their lives . Based in the Midlands and North West of England, such recommendations may need international adaptation to suit different theoretical or practice models of substance use support.…”

“…Thirdly, there is the old chestnut of partnership working. In our study , one area of concern arose repeatedly; professionals' experiences of poor and dismissive primary and acute care for people with current, or past, substance use. Their substance use histories were perceived as diverting adequate health responses away from their (serious) presenting medical needs.…”