Drink and Drugs News End of Life Care_Supplement_FINAL | Page 2

End of LifE CarE
ALCOHOL AND OTHER DRUG PROBLEMS:
WHAT THE PROFESSIONALS TOLD US
‘Despite often coming from
very different disciplinary
backgrounds, there were a
lot of shared common
experiences and challenges.’
WE WANTED TO LEARN ABOUT the key challenges
facing the professionals who worked with people with
AOD problems at the end of their lives. We talked to
two groups of people:
seventeen specialists from around the UK who
work in professions such as social work,
hepatology, general medical practice, nursing, and
senior policy roles
more than 130 professionals who work, or volun teer,
in our partner agencies (some via survey, others via
individual interviews or focus groups)
Despite often coming from very different disciplinary
backgrounds, there were a lot of shared common
experiences and challenges. These fell into three broad
categories: (i) challenges at an individual level;
(ii) challenges at an organisational level; and
(iii) challenges at a systems level.
INDIVIDUAL LEVEL CHALLENGES
1. Hospice professionals did not find it easy to ask, or
talk, about a person’s substance use, and substance
use staff did not find it easy to talk to someone
about their end of life needs and wishes.
2. Not knowing how to raise the topic of substance
use or end of life care was a barrier for some
professionals. There was a clear lack of confidence
about how to have that discussion.
3. Recognising end of life care needs was complicated
at times by not knowing whether the symptoms
people were experiencing related to the person’s
failing health or to their substance use (or
withdrawal), as both might change daily.
4. The professionals we spoke to had often advocated
for someone where they felt the person was being
stigmatised, treated unfairly, or their needs were
being overlooked because of their substance use.
5. Professionals also found it emotionally difficult
working with these overlapping issues: hospice
professionals felt frustrated when working with
someone whose substance use prevented them
from having a better quality of death; substance
use professionals felt loss and sadness when
someone they worked with died, and this was not
often recognised.
ORGANISATIONAL LEVEL CHALLENGES
6. Symptom and pain management was a major
challenge for many of the medical professionals we
spoke to. They had concerns about under- and over-
prescribing pain relief medication as well as
concerns about medication being used by family
members or friends. Some used safes and locked
boxes to try to address this concern.
7. Family members were not always seen as supportive,
particularly when they had their own substance
GOOD PRACTICE EXAMPLE
DANIEL, AGED 41
Daniel has been a heroin user
since he was 15. He has been in
drug treatment several times, but
never managed to abstain from
drugs. Daniel found out that he
had hepatitis B and C almost a
decade ago and is under the care
of his local hospital’s liver unit.
Over the past ten years he started
drinking alcohol as well, but his
mother’s terminal illness has
motivated him to become
abstinent before she dies. Daniel
has been attending the substance
use service for two years, receiving
methadone treatment, key worker
support and attending an art
group. He has stopped drinking. At
home, he is assisted by a carer for
ten hours a week who makes sure
he attends all his appointments
2 | DDN | End of life care for people with problematic substance use and their families
and supports him with some social
activities. Daniel understands that
he is not going to recover;
fortunately, his carer has received
end of life training and they have
both recently attended a Death
Café (where people can gather to
drink tea, eat cake and talk about
death) as a first step in beginning
to plan for a good death.
(Ashby et al, 2018: 25/26)
problems. Examples were given about family
members bringing illicit substances into the hospice
or attending the hospice in an intoxicated state.
SYSTEM LEVEL CHALLENGES
8. The recovery focus of national policy and most
treatment services was seen as unhelpful for this
group of people. A harm reduction approach would
be more beneficial given this group of people were
never going to be able to ‘recover’.
9. There were calls for collaborative national policy to
fill the policy gap underpinning work with people
with substance problems at the end of their lives.
WHAT WE KNOW
ABOUT THE SCALE OF
THE PROBLEM
To try to determine how widespread the overlap is
between substance use and end of life care, we
looked at a large number of existing datasets.
However, the headline finding is that currently,
people with problematic substance use and end of
life care needs cannot be directly identified in any
single health or population data monitoring
programme. This means that this group of people
are poorly represented in estimates of their end of
life care needs, and service providers lack evidence
about how to meet their specific needs.
There is no ‘typical’ end of life disease profile for
substance users, so estimates cannot be calculated
accurately based on morbidity. While liver diseases
do give some indication of the cause of end of life
among some problematic alcohol users, this group is
still more likely to die from heart disease, making it
impossible to separate problematic alcohol users
from the general population.
Practitioners’ help is needed to produce clear
evidence of the nature and extent of the end of life
care needs of this group. Accurate recording by
substance use practitioners of people’s health
conditions and lifestyle history on a routine basis
would start to build a database and enable the
collection of evidence to identify and meet the
specific care needs for this population.
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