Drink and Drugs News End of Life Care_Supplement_FINAL | Page 3

End of LifE CarE
PEOPLE WITH EXPERIENCE AND THEIR
FAMILIES, FRIENDS AND CARERS
‘Many people reported
positive experiences of care
from substance use and
specialist end of life
services... These resulted
from holistic and
compassionate approaches.’
WE WANTED TO FIND OUT how well the support
needs of two groups of people were being identified
and met: firstly, 11 people with problematic alcohol
and other drug (AOD) use who were approaching the
end of life; and secondly, 18 families/friends who
were caring for them.
PEOPLE WITH AOD AT THE END OF LIFE
Many people reported positive experiences of care
from substance use and specialist end of life services.
These resulted from holistic and compassionate
approaches to care, in contrast to less helpful short-
term, single-issue treatment. Examples of good care
included staff being available to answer questions,
offer reassurance and adopt a non-judgemental
attitude to their care. These approaches allowed for
trusting relationships to be built and enabled people
to begin to overcome the marginalisation and
stigmatisation they had typically experienced as a
person with a substance problem. Services that were
not effectively ‘joined up’ did not help people to have
a positive experience of end of life care.
From the experiences of people we interviewed,
we identified several care needs at the end of life.
These include the need for:
1. Better consideration of palliative and end of life care
needs within specialist substance use services to
avoid people leaving treatment when they are
chronically ill (or are discharged for non-attendance).
2. Greater practitioner understanding of how people
‘carry’ a substance use identity, and how guilt and
self-blame can substantially impair people’s
confidence in engaging with services. Some
research participants described feeling that they
did not ‘deserve’ treatment, declining to seek help
at a time of real need.
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3. More empathic approaches from health and social
care practitioners to facilitate trusting relationships.
Previous experiences of stigmatisation and dis crim in -
ation from service providers tended to result in
people anticipating future mistreatment from health
and social care professionals. This led to: (i) late
presentation to services (often only when a health
crisis occurred); (ii) communication barriers with
health and social care practitioners; and (iii) severely
limited opportunities for end of life care planning.
4. Greater clarity in communicating end of life issues,
with all services providing opportunities for people
to discuss fears of dying and make informed
decisions so that personal wishes could be
acknowledged.
RAPID EVIDENCE
ASSESSMENT (REA)
We conducted an REA between 1 January 2004 and 1
August 2016 to explore the peer-reviewed evidence
base in relation to end of life care and problematic
substance use. There were 60 papers meeting the
inclusion criteria. We found there was only a small
and diverse literature that lacked depth and quality.
Using recurring themes to categorise findings, the
papers fell into three broad groups focusing on:
1. pain and symptom management (25 papers)
2. homeless and marginalised groups (24 papers)
3. alcohol-related papers (7 papers)
FAMILY, FRIENDS AND CARERS
(‘FAMILIES’ FOR SHORT)
Families were often unaware of the extent of their
relative’s illness until their health had substantially
deteriorated. This was often due to their relative
denying or minimising their substance-related health
problem, avoiding healthcare services, or only seeking
medical help at a late stage. For some families, their
relative’s end of life condition was a shock and they
needed clear communication from health and social
care practitioners to understand how unwell their
relative was. However, many families described
multiple ‘missed opportunities’ for professionals to
identify palliative and end of life care needs in the
days, weeks, months and years before their relative’s
death. Many also gave examples of poor care, more
commonly from primary and acute care staff. Where
professionals communicated clearly with families,
and delivered compassionate care including
recognition of their needs, the difficulty of their
situation could be minimised.
Other families anticipated their relative’s ill health
or death. They faced demanding caring
responsibilities, which impacted negatively upon their
own health and wellbeing. Families wanted support
to help them deal with both the stigma they felt from
having a relative die from a substance-related
condition, and the longer-term effects of substance-
related bereavement. Yet health and social care
practitioners often had little recognition of families’
support needs as carers – whether before, at the time
of, or after their relative’s death.
Practitioner training or new delivery approaches
are needed to meet the many needs of this group
of families.
There were four ‘other’ papers that did not fall into
the above categories. The headline findings of the
REA included:
• Some clinicians might under-prescribe pain
medication to people with problematic substance
use because of an inappropriate fear of opioid
misuse or a fear of overdose.
• Harm reduction appears to be a more appropriate
treatment approach for this group of people than
abstinence-focused treatment, and there is a
need to involve local substance specialists to help
people reach more realistic harm reduction goals.
• More creative support is needed for homeless and
marginalised groups. This could include delivering
services in settings familiar to service users (eg
shelter/hostel-based care, end of life services in
needle exchanges).
• Piloting supervised consumption of substitute
medication with homeless people at the end of
life by health and social care staff could be
trialled in order to ensure safety and to avoid
medication diversion and stockpiling of opioids.
• Health and social care staff need to assess and
treat alcohol withdrawal at the end of life.
Most authors recommended universal screening for
substance misuse in palliative and end of life care
settings using a validated assessment tool. The
screening and subsequent monitoring would then
give clinicians the opportunity to communicate with
patients effectively about their medication and treat -
ment and generate effective supportive strategies
alongside them. Assessing mental health needs and
regular symptom reviews was also highlighted.
End of life care for people with problematic substance use and their families | DDN | 3