End of Life Care for People with Alcohol and other Drug Problems

Dr Marian PeacockMMU

Palliative and End of Life Care: Tackling Variations, Eradicating Inequalities

The TeamMMU

• Social care– Prof Sarah Galvani– Dr Gemma Yarwood– Dr Sam Wright– Dr Marian Peacock

• Nursing– Profs Josie Tetley and Carol Haigh– Dr Lucy Webb– Mr Gary Witham

• Psychology– Dr Jo Ashby

• External consultants– Ms Lorna Templeton– Dr Fiona Duncan

Partners

Substance use services• Aquarius• Phoenix Futures• ADS

End of life services• St. John’s Hospice, Lancaster• St. Catherine’s Hospice, Preston• Trinity Hospice, Blackpool

• Amanda Clayson, VoiceBox Inc• Tony Bonser, Carer Representative

Programme of Research

• Exploratory study – phase 1 (…of 3 phase plan)• Five strands:

1. International review of existing literature (REA) and key informant interviews

2. Analysis of existing quantitative datasets (Secondary data analysis)

3. Perspectives of people at the end of their lives and who have experienced/are experiencing problematic substance use (Interviews; digital stories)

4. Experiences of family members, friends, carers of people living with both issues on (secondary data analysis and interviews)

5. Experiences of professionals from substance use and EoL care services (survey, interviews, ?online discussion).

Strand 1- REA and KI interviews

REA• Review of the literature (grey literature- search

informed by main lit review). Modified systematic review method

• What is known? What is published? Gaps in the published knowledge

KI interviews• Purposive/ snowball sample of those in the field(s)• What is known? “Clinical anecdote”. Indicators of

challenges.

REA- results from searches

Search terms• End of life, palliative & substance use/ drug misuse

OR abuse OR use OR alcohol; dying/ death, & drug misuse/abuse/substance use/ alcohol/ medication abuse; “life limiting”/ “life threatening” & substance use/ drug misuse OR abuse OR use OR alcohol/medication abuse.

Data bases• ASSIA, Amed , PsycARTICLES-, Ovid, Medline ,

EBSCOhost, CINAHL

REA findings. 1

71 papers (+ updates from September 2016)Categories• Problematic alcohol use• Homelessness• Mental health• Pain• Review papers• One offs

REA findings.2

• Little is known overall – no high quality reviews of the specific area

• Some UK information on patterns of older drug and alcohol use

IndicationsPeople die young- mean 47 years Rate 3-14 times general populationOlder and younger users are differentOlder drug use death patterns shows treatment success

of the 90s.

REA findings. 3

The social gradient- social sufferingHistories of trauma and abuseRepeated losses“Nasty” deathsFemale drug users “even more negatively selected

group than male” (Stenbacka, 2010)Services not oriented to these complex needs and ways

of livingPain- debates are different in the UK and the US

Overarching themes

• Substance use deaths and “high symptom burden”• Both high tolerance of opiods and low tolerance of

distress• Histories of trauma, PTSD and links with

homelessness• EOL planning is often well received• Families- are assumed in eol care. Familes absent or

with high levels of difficulties• If people did come into eol services earlier there

would be a need to manage more “chaotic” pain

KI interviews

17 individualsPractitioners (hepatologist, eol clinicians, GP, CNSs, social workers, drugs workers, hostel

and probation workers etc), PH England, policy leads in eol care, expert by experience, family

members, coroner and others

Key themes

• Commissioning , fragmentation and the Health and Social Care act

• Place of death- hospital may not be “bad”, hostels as preferred location

• “Nasty” deaths- Sulistio, 2013• Innovative practice• Hard to predict the trajectory going forwards (the

“bulge”)• Not a homogenous population with the same needs

Summary

• Marked social gradient• Multiple populations not a single homogenous one• Hidden “middle class” alcohol use?• Where is the preferred place of care and

assumptions about the location of the “good death”• Families, carers, others- assumptions about death

and support• Presence of trauma and loss and mental health

difficulties

Dr Marian PeacockResearch Associate

Faculty of Health, Psychology & Social CareManchester Metropolitan University

Marian.Peacock@mmu.ac.uk