This rapid evidence assessment set out to determine the availability and quality of international research evidence on the subject of end-of-life care for people with alcohol and drug problems.1 There have been significant changes in the population of people with substance use problems. These include an increase in the number of older drug users and deaths in this population that are non-drug related and an increase in alcohol-related morbidity and mortality in older users.

The review gathered together any research/evidence in the current responses to end-of-life care for this cohort, identifying gaps in the evidence, highlighting examples of good practice, and suggesting future directions for the research.

A significant gap in evidence on this topic was quickly identified, with a complete lack of evidence specifically on effective interventions, responses or models of practice, with no agreement as to what constitutes best practice for this group of people. As a result, the authors had to broaden their scoping of the evidence and instead produced a systematic map of the evidence available.

A final sample of 60 papers was included in this evidence review. Of these 60 papers, 32 reported empirical evidence. Applying quality assessment measures to these 32 papers, 9 were determined to be of high quality, 18 were of moderate quality, and 5 were of low quality. Most of the papers came from North American countries, with two-thirds of the papers quantitative in approach. Only 11 of the papers were qualitative studies. Three main areas/themes were covered in these papers, namely, pain management, homeless and marginalised populations, and alcohol related.

Recommendations

The systematic map highlighted the significant gap in research and evidence in this area, with a particular gap in qualitative evidence from either service users or providers. Of the papers covered in this review, recommendations on best practices that were contained within the papers were gathered. There were some common recommendations relating to safe and effective pain management strategies and harm reduction strategies. Some of the recommendations for pain management included the use of screening tools and active monitoring of people using substances. For alcohol-related issues, recommendations included highlighting the need for awareness of alcohol withdrawal at the end of life and the need for routine alcohol assessment among these patients. Recommendations looking at homeless substance users included the provision of alcohol and care in shelter environments, safety plans, and supervised drug consumption.

Challenges and evidence gaps

This review also highlighted some of the challenges faced by care workers providing services in this area, which may have an impact on implementing the recommendations above. There were concerns about achieving safe and effective pain management in the context of a person’s substance abuse and managing ‘lifestyle factors’ that may be associated with substance abuse. These may involve certain behaviours, experiences, and anxieties that people bring to the service and can be difficult to manage. The review also highlighted the underutilisation of primary care services in this population but with a subsequent overutilisation of emergency services, with short admissions and premature self-discharge. This trend leads to receiving terminal diagnoses at a late stage of the disease, reducing the ability to plan for high-quality care in this area.

The significant gaps identified in this review clearly show that this is an area where further research is needed to provide a better evidence base, which will help to develop better end-of-life care for people with alcohol and drug problems.

1    Witham G, Peacock M and Galvani S (2018) End of life care for people with alcohol and drug problems: rapid evidence assessment. Manchester: Manchester Metropolitan University. https://www.drugsandalcohol.ie/30056/