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https://doi.org/10.1177/02692163211061994
Palliative Medicine
1 –13
© The Author(s) 2022
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DOI: 10.1177/02692163211061994
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Palliative care needs and models of care
for people who use drugs and/or alcohol:
A mixed methods systematic review
Olivia Cook1, John Doran2, Kate Crosbie2, Phillipa Sweeney2,
Ian Millard2 and Margaret O’Connor1,2
Abstract
Background: Providing palliative care for individuals who use alcohol and/or drugs poses a multi-faceted challenge. In addition to
clinical and social needs, individuals may endure mental health problems, co-morbidities and homelessness, thus requiring a multi-
disciplinary, flexible approach to care.
Aim: To identify the palliative care needs and models of care for people who use drugs and/or alcohol.
Design: A mixed-methods systematic review was conducted using the JBI Manual for Evidence Synthesis.
Data Sources: Six databases were searched to identify relevant studies. Full text review and quality appraisal were completed
independently and in-duplicate by two reviewers with conflicts resolved by a third reviewer. Qualitative and quantitative data were
tabulated together using narrative synthesis, then categorised according to outcomes of interest, with similar and divergent findings
reported accordingly.
Results: Thirteen studies were included, nine qualitative and four quantitative, using a range of data collection methods, across various
settings. The difficulties for individuals who use alcohol and/or drugs as well as their formal and informal carers, in relation to end-of-
life care were examined, revealing access, care and skills issues. Three themes emerged which could underpin the development of a
model of care: interpersonal/organisational relationships; holistic care; and collaborating with other services and training.
Conclusion: Despite end-of-life needs of this population being different to others, challenges include creating inclusive policies, sensitising
staff to distinctive individual needs and training exchanges for staff working in both drug and alcohol services and palliative care.
Keywords
Palliative care, end-of-life care, substance related disorder, systematic review
What is already known about the topic?
Providing palliative care for people who use drugs and/or alcohol is very challenging.
There are few models of care to support them and their carers.
What this paper adds?
This paper highlights knowledge gaps in existing evidence in relation to models of palliative care for those who use drugs
and/or alcohol.
This paper discusses components of a developing a model of care, including awareness of organisational and interper-
sonal relationships, holistic care and collaboration with other services.
Implications for practice:
There are significant challenges in providing end of life care for those who use drugs and/or alcohol.
Given the small numbers of studies, it is difficult to develop evidence-based models of care.
While components of a model of care have been highlighted, more applied research is needed to support the develop-
ment of comprehensive models of care and inform practice development.
1Nursing & Midwifery, Monash University, Clayton, VIC, Australia
2Palliative Care, Melbourne City Mission, Melbourne, VIC, Australia
Corresponding author:
Olivia Cook, Nursing & Midwifery, Monash University, Clayton, VIC
3168, Australia.
Email: olivia@mcgrathfoundation.com.au
1061994PMJ0010.1177/02692163211061994Palliave MedicineCook et al.
research-arcle2022
Original Article
2 Palliative Medicine 00(0)
Background
Palliative care is vital in promoting quality of life for peo-
ple facing the end of their life.1 In recent years, palliative
care services have become more aware of the end-of-life
care needs of people from various minority groups.1
Barriers commonly experienced are inability to access
health services, fear of discrimination and lack of trust in
mainstream health services.2
An increasing number of older people use drugs and/
or alcohol substances,3 with a rise in alcohol-related mor-
bidity in older adults.4 People who use substances are
more likely to die prematurely compared with the general
population,3 often dying from non-drug-related condi-
tions. The care for those who use drugs and/or alcohol
may be complicated by homelessness and mental health
problems.; giving rise to a lack of continuity of care and
perceived competing priorities in relation to institutional
zero-tolerance drug and alcohol policies.5
Consequently, there are numerous considerations for
palliative care services in caring for this population group,
with little evidence to provide guidance. These include:
understanding their specific needs as they face the end of
their life; identifying suitable service model(s); accessing
end-of-life care4; and distinctive implications of their sub-
stance use for symptom management.6 Regardless, in pal-
liative care settings the use of drugs and/or alcohol mostly
remains hidden, with the prevalence of substance use in
European countries having never been reported.6
Lack of evidence to underpin the provision of end-of-
life care for those dying with alcohol/drug problems4
means this area remains under-researched7 and presents
challenges to palliative care services. From a Rapid
Evidence Assessment, Witham et al.4 identified a lack of
empirical evidence, diversity, depth and quality of papers,
especially in relation to interventions to improve end-of-
life care and models of care.
Using an alcohol or drug screening tool was a helpful
way to assist in managing symptoms especially pain.4
However, policies that guide clinical practice on screening,
caregiver screening and the continued use of substances
in those with a substance abuse history, are not routine in
palliative care services.4
This population group have different needs at the end
of their life and care may be challenging, especially in man-
aging clinical problems like alcohol withdrawal.3 Clinical
management may be difficult, as those with a history of
substance dependence have higher symptom scores for
pain, dyspnoea, sleep and well-being.3 Behaviours like
non-engagement with the healthcare system; perceived
prejudice from healthcare staff5; challenging interpersonal
behaviours and self-neglect; as well as how to ascertain a
person’s decision-making capacity, are concerns for staff.5
Ways to improve end-of-life care of people with sub-
stance addictions requires further research, but includes
developing an organisational commitment to monitor
their end-of life needs.8 Staff education could use a train-
ing exchange model where substance use and palliative
care services could assist with each other’s knowledge
gap.8 Nurses may play a key role in person-centred end-of-
life care of a homeless person with addictions, by increas-
ing their own knowledge of the care required and learning
from other support services.5
Policy directions could strengthen this joint approach
to care, but again, require further evidence. Additionally,
policies should underpin educational approaches that will
equip staff with knowledge and skill to work effectively
with people who use substances at the end of their life;
and policies to counter stereotyping and stigma, to ensure
that care is accessible for this group of people at the end
of their life.8
Thus, there remain many gaps in addressing care for
people who use substances at the end of their life. Where
the work of Witham et al.4 provided an important over-
view of the evidence in this field, this review seeks to
focus attention on the experiences and perspectives of
the key stakeholders in this issue – the person who uses
substances, their family and friends, and the health and
social service care providers. Synthesising these key per-
spectives allows for the identification of potential inter-
ventions and system changes that will be most beneficial
to achieving better palliative care for people who use
drugs and/or alcohol.
The aim of this systematic review was to identify the
palliative care needs and models of care available for peo-
ple who use drugs and/or alcohol and their carers. Three
specific objectives were addressed:
To review the experiences/needs/problems of indi-
viduals who use drugs and/or alcohol relating to
palliative and end-of-life care;
To determine the palliative and end-of-life care
experiences/needs/problems of informal and for-
mal caregivers of individuals who use drugs and/or
alcohol;
To ascertain models of care for the provision of pal-
liative and end-of-life care for people who use
drugs and/or alcohol and whether there are the
facilitators and barriers to their applicability.
Methods
A systematic review is a summary and synthesis of all
existing evidence relevant to a topic or question of inter-
est.9 The type of evidence reviewed is dependent on the
nature of the question and the synthesised knowledge it
seeks to generate. As this review aims to identify ‘experi-
ences’, ‘needs’, ‘problems’ and ‘barriers and facilitators’ it
is appropriate to include both qualitative evidence that
explores these phenomena, along with quantitative
Cook et al. 3
evidence of the measurement of these constructs. Hence,
rigorous systematic review methods for each evidence
type have been followed.
Protocol and registration
This review was conducted in accordance with, the
Synthesis Without Meta-analysis (SWiM) guidelines,10
and the JBI Manual for Evidence Synthesis.9 An a priori
protocol was established for this review and submitted to
PROSPERO for registration on 17 July 2020. An amend-
ment to the protocol was submitted to reflect minor
changes to the wording of review questions and changes
to the review team. The registration number for this pro-
tocol is CRD42020192778 and is available from: https://
www.crd.york.ac.uk/prospero/display_record.php?ID=
CRD42020192778.
Eligibility criteria
For the purpose of this review, the consensus definition of
palliative care proposed by Radbruch et al.11 (p. 755) has
been applied: ‘Palliative care is the active holistic care of
individuals across all ages with serious health-related suf-
fering due to severe illness and especially of those near
the end of life’. In this review, palliative care, end-of-life
care and terminal care are used concurrently or inter-
changeably, to connote the care provided to an individual
in the final stage of their life, as well as respecting concep-
tual ambiguity in the language of the included publica-
tions. The search terms were derived accordingly to
ensure capture of all relevant literature.
Inclusion criteria. To be considered for inclusion, studies
were required to meet the following criteria:
Used a qualitative, quantitative or mixed methods
approach;
Peer-reviewed;
Published in English;
Included participants of any age or gender;
Included participants with a life-threatening illness
who either had a current or past history of drug
and/or alcohol addiction, or closely connected to
those who do. Substances were limited to alcohol,
illicit and recreational drugs (covering illegal drugs
like heroin, pharmaceuticals used for a purpose
other than what they were intended and psychoac-
tive substances).
Explored the palliative care needs/problems/expe-
riences of people with substance use disorder or
their proxies (carers); AND/OR
Explored the perspectives of health care providers
on the provision of palliative care service for peo-
ple with substance use disorder; AND/OR
Explored the models of palliative care available for
the people living with substance use disorder and
the facilitators and barriers to their applicability.
Exclusion criteria. Studies were excluded based on the
following criteria:
Study design: systematic reviews, opinion pieces,
editorials, comments, conference abstract, disser-
tation or letter;
Focussed on participants who were addicted to
tobacco only;
Investigated the misuse of prescription medication in
the palliative care settings un-related to addiction.
Information sources and search strategy. A three-step
search strategy was utilised in this review. An initial lim-
ited search of Ovid Medline was undertaken using the
terms derived from the ‘PICO’ in Table 1 with the aim of
identifying indexed terms from relevant titles and
abstracts to refine the search strategy. A comprehensive
search using all identified keywords and indexed terms
was then undertaken across all included databases (Ovid
Medline, PsycINFO, Psycarticles, Ovid Embase, Emcare,
CINAHL) from 2000 to May 2020. The exact search terms
and limiters used in OVID Medline are shown as an exam-
ple in Table 2. Search results relating to ‘addiction’ were
then combined with the Boolean operator ‘OR’ as were
those relating to ‘palliative care’. The two groups of search
results were then combined with the Boolean operator
‘AND’ to provide the final search results for each data-
base. Finally, a hand-search of the reference lists of all rel-
evant articles was conducted to identify additional studies
that may not have been identified through the database
searches.
Study selection. Search results were exported from each
database to the reference management software End-
note12 with references then imported into the Covidence
online systematic review management platform.13 Covi-
dence was used for title and abstract and full text screen-
ing. Each step was undertaken by two reviewers
independently and in duplicate. Any conflicts arising during
this process were resolved by a third independent reviewer.
Data collection process and data items. A customised data
extraction tool was developed using MS Excel to store and
manage extracted data. Data were extracted from included
studies independently and in duplicate by the review
team. Extracted data were compiled and a third reviewer
independently resolved discrepancies. The following data
were extracted from each paper: country; study setting;
study aim; methodology; study design; sample size; par-
ticipant characteristics; needs and experiences of those
with substance use disorders relating to palliative care;
4 Palliative Medicine 00(0)
needs and experiences of formal and informal caregivers;
models of care; and summary of key findings.
Quality assessment. Risk of bias and critical appraisal was
conducted independently in duplicate by two reviewers.
Disagreements were resolved by a third reviewer in
accordance with the JBI Manual for Evidence Synthesis.9
The suite of JBI Critical Appraisal Tools assess the meth-
odological quality of studies of various design and the
extent to which risk of bias is addressed by authors. For
each criterion assessed as met on the appropriate tool, a
score of ‘1’ was applied. Where criteria are assessed as
not met or if unclear to the reviewer, a score of ‘0’ was
applied. The scores were then calculated for each study
and converted to a final quality rating of ‘low’, ‘moderate’
or ‘high’ quality. The following Joanna Briggs Critical
Appraisal Tools and scoring parameters were imple-
mented in this review: Checklist for Analytical Cross-Sec-
tional Studies (score out of 8; Low 0–2, Moderate 3–5,
High 6–8); the Checklist for Qualitative Research (score
out of 11; Low 0–3, Moderate 4–7, High 8–11); and the
Checklist for Cohort Studies (score out of 11; Low 0–3,
Moderate 4–7, High 8–11).
Synthesis of results. As both qualitative and quantitative
studies were included in this review a convergent integrated
approach was taken to data synthesis according to the JBI
methodology for mixed methods systematic review.9 A nar-
rative synthesis was conducted where both qualitative and
quantitative data were tabulated together and categorised
according to the three outcomes of interest:
experiences/needs/issues of individuals who use
drugs and/or alcohol relating to palliative and end-
of-life care;
experiences/needs/problems of informal and for-
mal caregivers of individuals who use drugs and/or
alcohol, relating to palliative and end-of-life care;
models of care for the provision of palliative and
end-of-life care for people who use drugs and/or
alcohol and the facilitators and barriers to their
applicability.
Studies reporting on the same outcome of interest were
compared, with similar and divergent findings reported
accordingly. To examine study characteristics such as
country and setting, study methodology and design, sam-
ple sizes and participant characteristics, frequencies and
proportions were calculated. Given the heterogeneity of
the included studies, there was no opportunity to conduct
a meta-analysis of quantitative studies nor a meta-synthe-
sis of qualitative studies.
Table 1. PICO terms used to derive search strategy.
P I C O
• Addiction
• Substance use disorder
• Alcohol/alcoholism/alcohol dependence
• Drug/drug use/drugs of abuse/street drug
• Opioid (morphine/Buprenorphine /heroin/fentanyl/
methadone)/opioid use disorder/abuse
• Illicit substance/illicit drug use
• Cocaine
• Ecstasy
• Narcotic
• Intoxication
• K2
• Prescription drug use/prescription medication
Palliative care/
end-of-life care/
terminal care
None • The palliative care needs/
problems/experience of patients
with substance use disorder or
their proxies (carers);
• The experience or problems of
health care providers who provide
palliative care service for patients
with substance use disorder;
• The palliative care model for
patients with substance use
disorder.
Table 2. OVID medline search.
Themes Search terms
Substance use
disorder
‘Substance-related disorders’/OR ‘Analgesics’/OR ‘Opioid’/OR ‘Alcoholism’/OR ‘Illicit drugs’/OR ‘Addiction’
OR ‘Substance use disorder’ OR ‘Alcohol’ OR ‘alcohol dependence’ OR ‘drug’ OR ‘drug use’ OR ‘drugs
of abuse’ OR ‘street drug’ OR ‘opioid’ OR ‘morphine’ OR ‘buprenorphine’ OR ‘heroin’ OR ‘fentanyl’ OR
‘methadone’ OR ‘opioid use disorder’ OR ‘abuse’ OR ‘illicit substance’ OR ‘illicit drug use’ OR ‘cocaine’ OR
‘ecstasy’ OR ‘narcotic’ OR ‘intoxication’ OR ‘K2’ OR ‘Prescription drug use’ OR ‘prescription medication’.
Combined with ‘AND’
Palliative care ‘Palliative care’/OR ‘Terminal care’/OR ‘end-of-life care’.
Limited to studies published in English
Limited to studies published 2000–2020
Cook et al. 5
Results
Study selection
The combined searches identified 5712 studies, of
which 1924 were removed as duplicates. The title and
abstract screening of the 3788 remaining studies identi-
fied 206 for full text review. Following full text review,
193 were excluded. The reasons for exclusions are
shown in Figure 1. In total, 13 studies met the inclusion
criteria. A bibliographic review of included studies did
not identify any additional studies.
Characteristics of included studies and
participants
Study characteristics. The full characteristics of individual
studies are provided in Table 3 (provided at the end of this
document). The included studies came from five countries;
the US (n = 5), Canada (n = 4), the Netherlands (n = 2), Aus-
tralia (n = 1) and the UK (n = 1). A range of health and social
care settings were described – hospitals14–16;community-
based palliative care services13; outpatient clinics,17–19
homeless hostels20; and support services including emer-
gency shelters, supportive housing, residential harm
Records idenfied from databases
n= 5712
Records removed before screening:
Duplicates records removed
n=1924
Records screened
n=3788
Records excluded through human
screening n=3582
Reports sought for retrieval
n= 206
Idenficaon
Screening
Studies excluded following full text
review n=193
Reasons for exclusion:
73 –Publicaon not primary
qualitave/quantave research
69 -Conference Abstract
40 - Wrong paent populaon
5 - Wrong seng
4 - Wrong intervenon
1 - Wrong indicaon
1 - Wrong outcomes
Studies includedin review n=13
Reports of included studies n= 13
Included
Records not retrieved
n= 0
Reports assessed for eligibility
n= 206
Figure 1. PRISMA flow chart.
6 Palliative Medicine 00(0)
Table 3. Characteristics of included studies.
Authors Country Study setting Aim Study design No. of participants Participant
category
Mean age Gender Life-limiting illness Substance abuse
Dev et al.17 US Supportive care
clinic – MD
Anderson
To determine the frequency
of undiagnosed alcoholism
in our patient population
with advanced cancer
Medical record review
of cross-sectional
screening tools
100 consecutive
CAGE-negative
(−) patients and
100 consecutive
CAGE-positive (+)
patients from 598
patient records
Patient Median age
(range), CAGE–
61.3 (52.3−71.2)
CAGE + 58.6
(51.2−64.7)
Male n (%)
CAGE–51 (51)
CAGE + 68 (68)
Type of cancer across
whole sample (n)
Lung 37
Gastrointestinal 47
Urologic 15
Breast 11
Gynaecologic 13
Head/neck 41
Haematologic 7
Other 12
History of illegal drug use
CAGE–1 (1)
CAGE + 17 (17)
Holden
et al.16
US Indiana University
Hospital
To identify patient-level
factors associated with
both PC and hospice
referrals in patients with
decompensated cirrhosis
Cross-sectional n = 397 Patient 56.8 (SD 9.8) Male 62.5% Decompensated cirrhosis Alcohol use within
6 months 18.6%
Substance use within
6 months 4.8%
Najafian
et al.18
US Impatient Liver
Clinic
To examine advanced care
plans, and related outcomes
for a transitional care liver
clinic (TSLC) who died within
1 year of the initial visit.
Retrospective chart
review.
n = 18 (analysis
was only of those
who died)
Patient 56 n = 12 male
n = 6 female
End stage liver disease. Active alcohol or
substance use n = 11
(61%)
Podymow
et al.24
Canada Shelter Based
Palliative Care
Hospice.
A retrospective analysis of
a cohort of terminally ill
homeless individuals and
the effectiveness of shelter-
based palliative care. As
proof of principle, a cost
comparison was performed
Retrospective chart
review + cost analysis
n = 28 Patients 49 n = 25 male
n = 2 female
n = 1 transgender
Liver disease :43%.
HIV/AIDS: 25%.
Malignancy: 25%.
Other: 8%.
N (%)
Alcohol 14 (50%)
IV Drug 6 (21%)
Any street drugs 13
(46%)
More than one street
drug 6 (21%)
No addiction 5 (18%)
Dzul-Church
et al.15
US Public hospital,
San Francisco
To describe experiences
of serious illness including
concerns, preferences, and
perspectives on improving
end-of-life (EOL) care in
underserved inpatients
Interviews n = 20 (91% of
22 who were
approached)
Patient 54.5 years
(range,
38–78 years)
Male 13 (65)
Female 6 (30)
Transgender
(MF) 1 (5)
Diagnosis (n) Cancer (11)
End-stage liver disease (5)
COPD (2)
Congestive heart failure
(2)
HIV/AIDS (2)
Substance use, n (%)
Active 5 (25) Past 7 (35)
Ebenau
et al.25
The
Netherlands
Not reported To explore which problems
and needs patients with
substance use disorder and
multiple problems, and
their proxies, experience in
a PC phase
Interviews Nine patients and
three proxies
Patient and
their proxies
Proxies: not
reported
Patients:
61 years
Proxies: not
reported
Patients: eight
male, one female
Proxies: not
reported
n = 6 COPD
n = 1 cirrhosis of the liver
n = 2 both
Substance (n)
Cannabis – 4
Cocaine – 3
Multiple not specified – 1
Alcohol – 4
Heroin – 3
LSD – 1
Opiates – 1
Ebenau
et al.26
The
Netherlands
Not reported To investigate the problems,
needs and possible
improvements suggested or
experienced by healthcare
professionals, volunteers
and experts-by-experience
regarding PC for patients
with substance use disorder.
Focus groups n = 48 healthcare
professionals
n = 4 volunteers
(including n = 1
expert-by-
experience)
48 healthcare
professionals
Four
volunteers
(including one
expert-by-
experience)
Mean age in
years (SD) 49.7
(12.8)
Male 14 (27%)
Female 38 (73%)
N/A N/A
(Connued)
Cook et al. 7
Authors Country Study setting Aim Study design No. of participants Participant
category
Mean age Gender Life-limiting illness Substance abuse
MacWilliams
et al.14
Australia Hospital and
Community -based
palliative care and
homeless support
services
To identify best practice
for managing the palliative
care needs of clients
experiencing homelessness;
to guide policies for a
community-based palliative
care service working with
these clients.
Case study and
Interviews
n = 6 formal
caregivers
Formal
caregivers
Not reported Not reported Case study presented
squamous cell carcinoma
of the mouth
Alcohol in case study
provided but other
substance use discussed
McNeil
et al.23
Canada Residential HIV/
AIDS Care Facility
To explore how
the integration of
comprehensive harm
reduction services into this
setting shapes access to and
engagement with care
Semi structured
interview.
n = 13 Patient 48 years Male = 10
Female = 3
HIV/AIDS All participants reported
history of illicit drug use.
About 10 within the last
30 days.
McNeil and
Guirguis-
Younger21
Canada Multiple settings To identify challenges
health and social services
providers face to facilitating
and delivering end-of-
life care services to this
population
Interviews; Qualitative
Case Study Design
50 Formal
caregivers
– Health and
Social Service
professionals
Not reported Not reported N/A N/A
McNeil
et al.22
Canada Multiple settings To explore the role of harm
reduction services in end-
of-life care services delivery
to homeless and marginally
housed persons who use
alcohol and/or illicit drugs.
Semi structured
interview.
54 Formal
caregiver
Not reported Not reported N/A N/A
Shulman
et al.20
UK Homeless hostels,
London
To explore the views and
experiences of current and
formerly homeless people,
frontline homelessness staff
and health- and social-
care providers, regarding
challenges to supporting
homeless people with
advanced ill health, and
to make suggestions for
improving care.
Focus groups and
interviews.
(n)
Total (127)
Single homeless
people (28),
formerly homeless
people (10),
health/social-care
providers (48),
hostel staff (30),
outreach staff (10).
Current and
formerly
homeless
people,
frontline
homelessness
staff and
health- and
social-care
providers.
Not reported n = 68 male,
n = 59 female
Unspecified, some
discussion of liver disease.
Drug use (unspecified) (n)
Yes–7
No–16
Not reported–5
Methadone
Yes–3
No–20
Not reported–5
Alcohol
Yes–21
No–2
Not reported–5
Tarzian
et al.19
US Urban health care
clinic for homeless
individuals
This study sought to
increase HCPs’ awareness
and understanding of
homeless or similarly
marginalised individuals’
EOL experiences and
treatment preferences.
Focus groups using
a semi-structured
interview guide
n = 20 Patient Age range
19–63 years
Male n = 12
Female n = 8
HIV - no. not reported Not reported
PC: palliative care; COPD: chronic obstructive pulmonary disease; HCP: health care professional; N/A: not applicable; EOL: end of life; HIV: human immunodeficiency virus; AIDS: acquired immunodeficiency syndrome.
Table 3. (Continued)
8 Palliative Medicine 00(0)
reduction programmes and street outreach services.21–24
Two papers did not report the setting of their study.24,25
Among the included studies, nine were qualita-
tive14–17,21,25 and four were quantitative.16–18,24 All qualita-
tive studies employed one-to-one interviews for data
collection14,21,22,24 a case-study approach14,21 or focus
group interviews.19,20,26 All four quantitative studies
involved the extraction and analysis of data from medical
records and Podymow et al.24 additionally included a
cost-analysis.
Participant characteristics. Across the 13 studies, there
were 997 participants. Of those studies which reported
the gender of participants, 611 were male, 117 were
female, and two were transgender. Two studies did not
report the gender of participants.21,23
The majority of participants across the studies were
people receiving care for, or living with life-threatening
conditions (n = 643).15–20,23–25 Formal caregivers (n = 247)
included health care professionals and frontline home-
lessness staff from hostels, day centres and outreach
teams, participating in five of the included stud-
ies.14,20,22,24,26 Some studies also included volunteer work-
ers (n = 4)26 and proxies for people living with substance
use disorders at end-of-life (n = 3).25 Of the studies that
reported age profile of participants receiving care for life-
threatening conditions, the mean age ranged from 48 to
61 years15,16,18,19,23–25; however, Tarzian et al.19 reported an
age range from 19 to 63 years.
When reported (reported n = 10, not reported n = 3),
studies included participants with a range of life-limiting
diagnoses. Liver disease (end stage liver disease, cirrhosis
of the liver) featured most prominently in six stud-
ies,15,16,18,20,24,25 but people with other malignant diagno-
ses were included in four studies.14,15,17,24 HIV/AIDS and
lung diseases were also common diagnoses.15,19,23–25
Six studies broadly described substance abuse, drug use
and or alcohol use by participants.14–18,22 Three studies dif-
ferentiated the types of substances to specific agents: can-
nabis, cocaine, heroin, LSD, opiates25; Crystal Meth, crack
cocaine, powdered cocaine23; and Benzodiazepines,
Cocaine, Demerol, Marijuana, Morphine.24 Active and past
use of substances was explored in two studies and reported
as use within a time period: use within 6 months16 or
within 30 days.23 Active use of illicit drugs (crystal meth,
crack cocaine or powdered cocaine) was further defined
and reported among27 participants in one study within the
last 30 days, with four participants in the same study
reporting polysubstance abuse in that time.23
Quality of included studies. Three studies were appraised
using the JBI Checklist for Analytical Cross-Sectional Studies
with each scoring 9/9 indicating high quality studies with
low risk of bias.17,18,25 Holden et al.16 was the only cohort
study and was appraised using the JBI Checklist for Cohort
Studies, scoring 10/11 indicating high methodological
quality. The remaining studies were all qualitative in design
and appraised using the JBI Checklist for Qualitative
Research. These studies were all rated high in quality (scores
7–9/10) apart from MacWilliams’ et al.14 study which was
rated moderate quality with a score of 6/10. In most cases,
the quality score was downgraded for three main reasons:
the philosophical perspective of the study was not stated;
there were no statements either locating the researcher cul-
turally or theoretically; or the influence of the researcher on
the research or vice versa was not reported.
Experiences of individuals who use drugs
and/or alcohol, relating to palliative and
end-of-life care
Various key concepts were identified through analysis of
the data relating to the experiences, needs and problems
of people who use drugs and/or alcohol who need pallia-
tive and end-of-life care. Five studies14,15,17,23,24 reported
that participants experienced pain; however, pain may be
a physical experience not well managed,23 or reported as
an emotional experience, mainly fear of dying in pain.15
Difficult interpersonal relationships experienced by
individuals was a common theme throughout the studies,
either with family and friends or health professionals. The
experiences of loneliness, isolation, regret and remorse15,19
were reported in relation to estrangement from meaning-
ful relationships. Avoidance of future preference discus-
sions was reported in those who were homeless21,26; and
while not always wanting to discuss end-of-life care, indi-
viduals sought respect of their choices and to remain in a
familiar environment,19,20,25 preferring to die where they
lived, usually a homeless hostel.19,25,26
Three studies19,23,26 discussed the role of health profes-
sionals and the experiences and/or problems faced by par-
ticipants. Being valued as an individual and being listened
to were prominent.19,25 Participants in the Shulman et al.20
study perceived prejudice and lack of compassion of health
professionals towards people who use alcohol and/or
drugs and suggested that health professionals regarded
those who used alcohol as having a choice. These stigmas
may have contributed to late referral and individual pres-
entation to health care assistance, and thus missed oppor-
tunities for individuals to engage in end-of-life discussions
and receive palliative care.16,18 In contrast, those engaged
in a harm-reduction programme were able to develop
trusting relationships with health professionals, due to a
perceived lack of judgement around their drug-taking.23
Informal and formal caregivers of
individuals who use drugs and/or alcohol
relating to palliative and end-of-life care
Five studies considered the experiences/needs/problems
of informal and formal caregivers of individuals who use
Cook et al. 9
drugs and alcohol in the context of palliative and end-of-
life care14,20,25,26; only two of the five included the experi-
ences of informal caregivers.25,26
Those studies which reported the experiences of for-
mal caregivers acknowledged the complexity of caring for
people who use drugs and alcohol at the end of their life
(described as a substance use disorder (SUD)).26 Patients
with SUD often exhibited co-morbid conditions, including
psychiatric conditions.26 Symptom management was
more difficult for these people, particularly so when com-
plicated by the use and dose of opioids.21 While many
health professionals accepted non-disclosure or under-
reporting of substance use by individuals, informal car-
egivers reported that health professionals often took the
individual’s report at face value and did not confer with
them regarding actual substance use.25,26 Caregivers
reported that the social situation of many people with
SUD, like homelessness, meant they de-prioritised their
healthcare needs and were reluctant to engage with
health services.14,19,21
The compartmentalisation of health care was a com-
mon theme in studies. Specialisation of health profession-
als resulted in drug and alcohol workers lacking proficiency
in the care of an individual’s end-of-life care; and palliative
care staff being unfamiliar with issues of substance abuse.
Organisational structures in many health care facilities
mitigated against supportive communication among
health professionals of different disciplines. In two stud-
ies, it was found that stereotypes of those with SUD often
excluded this cohort from the usual end-of-life care.20,25 In
several studies, caregivers acknowledged that more flexi-
ble organisational policies were required when caring for
people with SUD.14,20,26
In the studies by Ebenau et al.25,26 there was consensus
that those who use drugs and/or alcohol benefit from
early referral to palliative care; and where there was suc-
cessful integration between drug and alcohol services and
palliative care services, illnesses often stabilised, resulting
in prolongation of life.25,26 Yet for informal caregivers, with
early engagement in care, there was still uncertainty
around prognostication.25
Health professionals reported that usual planning for
the future for others, was more difficult for people who use
drugs and/or alcohol.20,25 Routine conversations of pallia-
tive care staff with individuals, regarding goals of care and
preferred site of care or death, were more challenging.
Ebenauet al.26 described that lack of trust of health profes-
sionals hindered communication,21 compounded by the
dominant approach of living in ‘the here and now’, making
contemplating the future problematic.26
Models of palliative and end-of-life care for
people who use drugs and/or alcohol
Despite the numbers of studies reporting end-of-life care
for people who use alcohol and/or drugs, few described
actual models of care. Regardless, there were several
common approaches to care of this population group.
The importance of timely referral to palliative care was
common in the studies16,17,24; for example, people with
decompensating cirrhosis experienced both high mortal-
ity and health care use but were not referred to palliative
care; or if they were, it was shortly before death, when
there was often high symptom burden.16
As noted, several papers elucidated the communica-
tion requirements of staff who work with those with
addictions, especially in having respectful conversa-
tions.19,22 Paying attention to often difficult life stories,
may dictate end-of-life preferences15,25 Difficult or strained
relationships for those who use alcohol and/or drugs may
be the norm15,16 and the perception of un-welcomeness
on the part of staff was discussed as a barrier to care.15
Contemporaneously, most studies showed that inte-
gration and cooperation were characteristic of the way
health professionals needed to work with this population
group. This included connections with outreach pro-
grammes for those unable/unwilling to access inpatient
services.25 Establishing relationships with other provid-
ers22 assisted when offering holistic, multi-disciplinary
care like chaplaincy and homecare.15,20
Working alongside specialities other than cancer, to
offer palliative care consultations, resulted in increasing
likelihood of an out-of-hospital death.18 Where multiple
hospitalisations were characteristic of a disease trajec-
tory, prioritising advance care planning discussions may
ameliorate further admissions19 and activities like inap-
propriate medical interventions or CPR; supporting the
integration of palliative care into overall care.18 Advance
care planning would be more suited to this population
group if it were part of a goal-setting conversation, focus-
sing on the relationship rather than it being a legal
document.19
Routine screening for alcohol and/or drug use was con-
sidered important because of the potential impact of
alcohol and drugs on both symptom experiences and the
efficacy of medications,17 The CAGE questionnaire,17 com-
prises four items:
Have you ever felt the need to cut down on
drinking?
Have you ever felt annoyed by criticism of your
drinking?
Have you ever had guilty feelings about your
drinking?
Have you ever taken a morning eye opener?
The requirement of abstinence before admission to many
palliative care services was a major barrier to access for
those who use drugs and/or alcohol.21 In contrast, two
studies detailed a harm-reduction model of care; one in a
24-bed facility for people with HIV/AIDS,22 the other in a
15-bed shelter.24 McNeil et al.22 suggested three essential
10 Palliative Medicine 00(0)
harm reduction strategies – access to supplies, nursing
support and environment support.
Access to harm reduction supplies included discreet
and easy access to supplies like syringes, disposable cook-
ers, tourniquets and alcohol swabs at all times.22 Nursing
support was essential and included supervising injections
in residents’ rooms as requested, demonstrating safer
injecting techniques and being available to attend an
emergency. Nurses monitored residents for symptoms of
stimulant toxicity as well as dispensing Methadone.22 In
relation to the environment, McNeil et al.22 described the
requirement that a resident’s room be treated as a private
residence, where they may inject without supervision. An
emergency contact mechanism was available. Counselling
and nutrition services may also assist with overall wellbe-
ing. The facility offered residents a secure place, where
because of these supports, they were able to adhere to
medication regimens, thus improving overall health
outcomes.22
Similarly, the harm-reduction model suggested by
Podymow et al.,24 involved support from a psychiatric
nurse practitioner, provision of clean needles, safe syringe
disposal, a smoking area outside and dispensing a stand-
ard amount of alcohol on demand. This programme also
employed registered nurses and physicians 7 days per
week, supported by a client care worker as a substitute
family member to supervise those living there and assist
activities of daily living like applying for social benefits,
and attending medical appointments. Ancillary care was
also offered – occupational therapy, chiropody, and nutri-
tional support, and psychiatric illnesses were monitored
and treated. Even though the economic, clinical and social
benefits of these models were argued, it was acknowl-
edged that prevailing community attitudes towards legal
management of people who use drugs and/or alcohol,
may make implementation difficult.22,24
Ultimately Dzul-Church et al.15 argued that the basic
tenets of a ‘good death’, as understood in palliative care
settings – management of symptoms, clear decision-mak-
ing, assistance with preparation for death and affirmation
of the whole person – were just as relevant with this pop-
ulation group. Additionally, caring for a person in their
place of choice was described as a core value of palliative
care practice; no less for this group, despite the challenges
of some environments.14
Discussion
This paper sought to identify the palliative care needs of
people who use drugs and/or alcohol and their carers, as
well as what models of care supported them. While
numerous aspects of care were raised only two studies
proposed a model.23,24 The relatively few studies for this
systematic review (13), aligned with other findings of
inadequate evidence and thus hamper clinicians’ ability to
more fully understand what is required to meet the needs
of this population group and establish a model of care.
From the results, the writing team discussed the emer-
gence of three key areas of care, which could underpin
the development of a model of care and more adequately
provide care to this population.
Interpersonal/organisational relationships
People who use drugs and/or alcohol often had difficult
interpersonal relationships in their life generally14,18,26 and
exhibited challenging behaviours like a lack of engage-
ment with health professionals.9 Given this, there was an
important learning about the sensitivity required of pallia-
tive care staff in managing care, emphasising flexible, indi-
vidual and genuine attention.26 Staff needed to suspend
their judgement in accepting what the person themselves
sought for their end-of-life care.14
Thus, time was required for staff to develop a trusted
relationship with an individual,14,21 even though staff may
have had a view of competing priorities; for example, peo-
ple continuing to use drugs and/or alcohol while request-
ing medical treatment.21 People who use drugs and/or
alcohol may exhibit reservations about discussing their
healthcare generally, but were reticent to engage in
advance care planning specifically; however, they do want
their wishes respected,19,20 again, requiring these discus-
sions to occur within a trusted relationship.
In relation to organisational challenges, a perception
that mainstream palliative care services were quiet and
serene,21 inhibited access to people who use drugs and/or
alcohol, who sensed they did not fit in because of their
incompatible lifestyle.21 People who used drugs and/or
alcohol who participated in Tarzian et al.’s19 study into
end-of-life care said they were undertreated because of
perceived discriminatory prejudice of staff21; Tarzian
et al.19 also found that they sought access to the same
treatments as the general population. In reviewing organ-
isational approaches to this population group, more flexi-
bility may be required in both policies and practices,20,24
to guide organisational clinical approaches.7 In particular,
organisations which provide end-of-life care could be
encouraged to explore the implications of a harm-reduc-
tion policy, which tolerates a level of substance use.24
The needs of formal and informal caregivers were only
addressed in two studies25,26 and thus their needs
remained mostly unexplored. Of note however, was the
need to include informal caregivers in discussions about
care, negotiated in individual situations.25
Holistic care
Two studies21,26 described the negative impact of the spe-
cialisation of health care for people who use drugs and/
or alcohol; meaning that some of their needs will be met,
Cook et al. 11
to the detriment of others. Palliative care staff may need
assistance from health professionals skilled in assess-
ment and treatment of physical symptoms of those who
use of drugs and/or alcohol, and thus be of potential
complications.3Additionally, while allied care staff in pal-
liative care routinely assess an individual’s social and
emotional needs in relation to fear of dying, there may be
particular needs like the insecurity of their living situa-
tion, and care of disenfranchised family members and
others.15,20 McNeil and Guirguis-Younger21 noted that
these areas of care seldom overlapped, and although not
commonly used in end-of-life care environments, an
assessment tool may assist with ascertaining the effects
of alcohol on both symptoms and their management.17 A
multi-disciplinary team was essential in achieving holistic
care for a person whose needs may be challenging to
mainstream healthcare.21
An open conversation initiated by staff in the context
of developing a trusted relationship described above,
assisted in ascertaining an individual’s drug and/or alco-
hol consumption; this was preferred to a punitive
approach, which limited a health professional’s ability to
assess drug reactions, causes of particular behaviours and
the illness trajectory.21 McNeil and Guirguis-Younger21
suggested that enforced abstinence from drugs and/or
alcohol at the end of life was unrealistic; indeed, an absti-
nence policy may inhibit access to essential end-of-life
care.24 So as noted, the organisational challenge was to
examine the implications of a harm reduction policy
within end-of-life care settings, as opposed to enforced
abstinence.
Harm-reduction models were suggested by Podymow
et al.24 and McNeil et al.23 That clinicians need to tolerate
a level of drug or alcohol use by individuals was common
to both models, requiring access to supplies like needles;
full-time nursing support; the offer of ancillary services to
complement clinical care; and a holistic approach. All
these contributed to individuals’ increased security, with
consequent improvements in health outcomes.24
Collaborating with other services and
training/education
Providing timely end-of-life care for people who use drugs
and/or alcohol was found to be very challenging, com-
pounded by the presence of difficult behaviours, multiple
comorbidities or mental illness.24 Thus there were recom-
mendations to use a range of multi-disciplinary services to
individualise end-of-life care.16,25,26 Working alongside dif-
ferent specialities increased the likelihood of an out-of-
hospital death and promoted quality of life.18,26 Integration
of care across services required a commitment to the indi-
vidual requiring care, and a case manager may improve
the coordination across disciplines and services.14
As noted, palliative care services may not have the
expertise to manage the complexities of needs of people
who use drugs and/or alcohol. Conversely drug and alco-
hol services are not necessarily skilled or confident in car-
ing for people at the end of their life.20,25 There was an
opportunity therefore, to explore education and training
models to complement existing skills and in a way that
builds relationships between services. Such education
could use a training-exchange model25 to address the
stigma and attitudes towards drug and alcohol users; and
palliative care staff could develop skills in managing addic-
tion behaviours. Those who work with people who use
drugs and/or alcohol could benefit from what palliative
care can offer, especially when integrated into the other
care required.26
Strengths and limitations
There were strengths and limitations of the studies
included in this review as well as the review itself. The
included studies varied widely in their stated aims, with
few studies primarily investigating drug and alcohol use in
relation to palliative and end of life care. Rather, several
studies focussed on homelessness, with drug and alcohol
use and palliative and end-of-life care identified as closely
related issues. While the studies included were assessed
to be of high methodological quality, the review has high-
lighted the paucity of research specifically investigating
palliative and end-of-life models of care for those who use
drugs and/or alcohol.
This review strictly adhered to recommended guide-
lines for the conduct of systematic reviews. However
studies were limited to those published in English and the
search strategy did not include grey literature, which may
have yielded unpublished organisational reports provid-
ing information about palliative care service offerings to
those who use drugs and/or alcohol. Most studies were
conducted in North America perhaps limiting the transfer-
ability of results to other cultural contexts.
Conclusion
This systematic review sought to identify the palliative
care needs and models of care available for people who
use drugs and/or alcohol. Most studies were qualitative
and provided the perspectives of individuals experiencing
homelessness, many of whom use drugs and/or alcohol,
and their formal or informal carers. Yet few studies spe-
cifically investigated drug and/or alcohol use in relation to
palliative and end-of-life care provision and only two stud-
ies investigated models of care for this population. It is
thus recommended that further research be conducted to
develop and test models of care that address the barriers
experienced by those who use drugs and/or alcohol.
12 Palliative Medicine 00(0)
The perceived difficulties of accessing palliative care
and end-of-life services were numerous, despite the argu-
ments that the end-of-life needs of this group are the
same as others’. The challenges of creating inclusive poli-
cies, sensitising staff to distinctive individual needs and
multi-disciplinary training exchanges for staff working in
both drug and alcohol services and palliative care remain
to be addressed.
Author roles
OC established and wrote the protocol, directed the overall pro-
ject, searched screened and analysed the studies, and contrib-
uted to the manuscript; MOC contributed to the protocol,
screened and analysed the studies and contributed to the man-
uscript; PS, IM, JD and KC screened and analysed the studies and
contributed to the manuscript. We are grateful to Ms Yunyun
Dai who undertook the original database search and assisted
with protocol preparation.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship and/or publication of this
article.
Funding
The author(s) disclosed receipt of the following financial support
for the research, authorship, and/or publication of this article:
$1,000 in funding was paid to the School of Nursing and Midwifery
Monash University from Melbourne City Mission for research
assistance with the search strategy and full text retrieval.
ORCID iD
Margaret O’Connor https://orcid.org/0000-0002-0700-8289
Data availability statement
Data templates can be made available upon written request to
the corresponding author.
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