European Journal of Cardiovascular Nursing (2023) 22, 445–453 REVIEW ARTICLE

https://doi.org/10.1093/eurjcn/zvac112

Palliative care interventions and end-of-life

care as reported by patients’ post-stroke
and their families: a systematic review
Natalie Govind 1*, Caleb Ferguson 1,2
, Jane L. Phillips 1,3
,

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and Louise Hickman 1,2
1
IMPACCT, Faculty of Health, University of Technology, PO Box 123, Broadway, Sydney, NSW 2007, Australia; 2School of Science, Medicine and Health, University of Wollongong,
Northfields Ave, Wollongong, NSW 2522, Australia; and 3School of Nursing, Queensland University of Technology, Victoria Park Road, Kelvin Grove, QLD 4059, Australia

Received 20 May 2022; revised 21 November 2022; accepted 25 November 2022; published 29 November 2022

Aims Internationally, there is an urgent need to implement guidelines supporting integration of palliative care into stroke clinical
practice. Despite considerable advances in acute stroke management, ∼20% of all acute stroke patients die within the first
30 days. Palliative care is well established in diseases such as cancer or advanced heart failure, but evidence-based interventions
of high quality are limited in stroke populations. This systematic review aims to identify and evaluate quantitative studies that
describe palliative care interventions and end-of-life care as reported by patient’s post-stroke and their families.
.............................................................................................................................................................................................
Methods A systematic review following Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines was conducted
and results in Cumulative Index to Nursing and Allied Health Literature, PubMed, Cochrane, Embase, Ovid, Proquest, and Scopus from
1990 to April 2021. The National Heart, Lung and Blood Institute standardized quality rating tools for quality assessment were
used. Seven studies were identified, and all used descriptive quantitative designs. There were no interventional studies. The
results were synthesized narratively according to the elements of palliative care interventions and end-of-life care: symptom
burden and satisfaction, loss of autonomy at the end of life, and acknowledging uncertainty.
.............................................................................................................................................................................................
Conclusion This review highlights the limited empirical evidence that describes palliative care interventions and end-of-life care as re­
ported by patient’s post-stroke and their families. Most of the current evidence focuses on the provision of care during
the final days and hours of life, or end-of-life care, with little evidence to guide the integration of palliative care into post-stroke
clinical care, especially for patients with an uncertain prognosis. Acute stroke is sudden, unexpected, and life-changing, and
patients and families would benefit from well-designed targeted interventions to determine strategies that address the diverse
palliative needs of this patient population.
.............................................................................................................................................................................................
Registration PROSPERO CRD42021254536.
----------------------------------------------------------------------------------------------------------------------------------------------------------------

* Corresponding author. Tel: +61 295145741, Email: natalie.govind@uts.edu.au

© The Author(s) 2022. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For permissions, please email: journals.permissions@oup.com.
446 N. Govind et al.

Graphical Abstract

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end of life uncertainty

Aim 50% of patients

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Increase in NIHSS experienced
To identify and evaluate quantitative
was associated with pain, dyspnoea,
studies that describe palliative care
a lower quality of Symptom incontinence
interventions and end of life care as
end of life care burden and and psychological
reported by patient’s post-stroke
satisfaction distress
and their families

Palliative
Palliat
all iatiive care
care can be provided
ca prrovided independent of a patient’s prognosis
prrognosis
Syst
ystematic
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f need to avoid
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Health care
Health care professionals
prroffessionals caring for
for patients’
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postt-strrokke must be able to identify
identify
CINAHL, SCOPUS, MEDLINE,
Cochrane Library, Proquest, OVID Future research should addaddress
dress practical
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deliver
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quality
ty of life
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.............................................................................................................................................................................................
Keywords Stroke • Palliative care • Patients • Families • Terminal care

Novelty
• Palliative care can be provided independent of a patient’s prognosis.
• Healthcare professionals need to avoid uncertainty paralysis and initiate palliative care early in severe stroke trajectory.
• Effective communication is essential to improve access to palliative care in stroke.
• Healthcare professionals caring for patients’ post-stroke must be able to identify patients and families who might benefit from receiving pal­
liative care interventions.
• Future research should address practical approaches to improving palliative care delivery to patients’ post-stroke and their families to op­
timize quality of life.

Palliative care focuses on improving quality of life and reducing suffer­

Introduction
Globally, stroke is the second leading cause of death and a key contribu­
tor to morbidity and disability. The global lifetime risk of stroke is one in
four.1 Despite considerable advances over the last 20 years in acute
stroke management (such as thrombolysis, embolectomy, telehealth,
and pre-hospital care), approximately a fifth of all people who experi­
ence a stroke die within the first 30 days, and fewer than 10% receive
palliative care.2,3 Following a severe stroke, patients have a likely trajec­
tory of sudden decline in functional status, a high symptom burden, and
potential prognostic uncertainty, which may conclude in death, long-
term disability, and reduced quality of life.4
ing for patients with life-limiting illness and their families.5,6 Palliative
care can be provided independent of a patient’s prognosis, as prognos­
tic uncertainty often delays the initiation of palliative care interventions
or referral to specialist palliative care. Opportunities to discuss and
understand any uncertainty about prognosis should not prevent initi­
ation of palliative care from being explored.7 Dealing with end-of-life
issues places considerable demands on patients and families particularly
as stroke is sudden, unexpected, and life-changing. Palliative care is a
multi-disciplinary approach, whose goal is to prevent and relieve suffer­
ing by early identification, assessment, and treatment of physical and
psychological symptoms, as well as emotional and spiritual distress.6,8
Palliative and end of life care post-stroke 447

International stroke clinical practice policy and guidelines support the

urgent need to integrate palliative care principles into acute stroke Table 1 Inclusion and exclusion criteria
management.7,9 Palliative care is clinically integrated into the manage­
Inclusion Exclusion
ment of progressive illnesses such as cancer but less so for acute con­ ...........................................................................................
ditions such as severe stroke. This indicates a need to understand and Published in English Qualitative studies
quantify the current state of the science and identify gaps in the litera­
Peer-reviewed Quantitative studies that did not
ture. This systematic review aims to identify and evaluate quantitative
studies that describe palliative care interventions and end-of-life care Published 1990–April 2021 do the following:
as reported by patient’s post-stroke and their families. Quantitative studies that gathered
• Did not collect data directly
empirical data directly from from patients and/or families
patients and/or families
Methods Participants 18 years or over • Did not focus on palliative care
interventions or end of life
The Preferred Reporting Items for Systematic Reviews and Meta-analyses Adults with primary diagnosis of
guidelines were followed for this review.10 The study protocol was regis­ stroke • Data did not represent this

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tered on PROSPERO, registration number CRD42021254536.
Search strategy
In consultation with a health librarian, a search strategy consisting of exact
medical subject headings and key words related to ‘palliative care’, ‘terminal
care’, ‘end of life’, and ‘stroke’ was used and combined with ‘AND/OR’ on
each database (see Supplementary material online, Table S1). The databases
included the Cumulative Index to Nursing and Allied Health Literature,
PubMed, Cochrane Database of Systematic Reviews, Cochrane Central
Register of Controlled Trials, Embase, Ovid, Proquest, and Scopus, from
1990 to April 2021. Hand searching of included article reference lists was
also undertaken, and the authors’ own personal libraries were also
searched.
Screening process
Quantitative studies generating primary data were included if published in
an English peer-reviewed journal between 1990 and April 2021. Studies
were included if they described empirical data reported by adults (>18
years) with a primary diagnosis of stroke and their families who underwent
a palliative care intervention or end-of-life care in any setting. While quali­
tative studies provide in-depth insights into lived experience of illness, the
current review focused on quantitative measures of palliative care interven­
tions reported by patients’ post-stroke and their families to estimate quality
of care. For the purpose of this review, we defined a palliative care interven­
tion as actions performed by healthcare professionals to identify and/or dis­
cuss the approaching end of life and related palliative care needs or to
provide palliative care. Papers were excluded if they were qualitative, did
not provide primary data from patients or family members, were not in
English, provided little focus on palliative care interventions or end of life,
or did not represent this specific population only. Studies with generic inter­
ventions outside of the above definition that aimed to improve quality of
care of all patients’ post-stroke and did not describe palliative care were ex­
cluded. Table 1 contains the inclusion and exclusion criteria that were used
for the selection of the studies.
All studies were obtained from electronic database searches and were
imported into the Covidence™.11 Titles and abstracts of all papers were
independently examined by two reviewers (N.G. and L.H.) to ascertain
whether they met the inclusion criteria. If either reviewer could not confi­
dently include or exclude the article based on the abstract or citation, the
full paper was obtained. Conflicts were discussed (N.G. and L.H.) with re­
maining conflicts resolved by a third reviewer (C.F.).
Data extraction and quality assessment
Full-text data extraction was performed in Covidence11 by the first review­
er (N.G.). The extracted data were then reviewed by a second reviewer
(L.H.). Data obtained included the study aim, study design method, inter­
vention, participant characteristics and setting, outcomes, and results.
Two reviewers (N.G. and L.H.) worked independently, and disagreements
were resolved through consensus or in consultation with a third reviewer
(C.F.).
Studies were independently assessed using the National Heart, Lung and
Blood Institute standardized quality rating tools for quality assessment12
(content specific). The ‘Quality Assessment Tool for Observational
Families/carers of adults specific population only and/or
diagnosed with stroke could not be separated
Families/carers of adults who die Studies that focused on health
in any setting as a result of stroke professional views or did not focus
specifically on stroke patients and/
or families
Studies that were not peer-reviewed
Reports, guidelines, letters, editorials,
abstracts, conference presentations,
literature, and systematic reviews
Languages other than English
People under 18 years of age
Adults with a diagnosis other than
stroke
Cohort and Cross-Sectional Studies’ was used to assess the internal validity
and risk of bias for each study.
Synthesis
A narrative approach was used to synthesize the included studies as it al­
lowed for the integration of a broad range of quantitative designs and meth­
ods. This approach follows the methods recommended by Popay et al.,13
notably tabulation, textual descriptions, grouping, and translation of data
through content analysis. This provides a way of interpreting and categor­
izing information and thus seeks to ‘tell the story’ of the findings from the
included studies. Initial synthesis was undertaken by one author, and itera­
tive discussion was used to distil the elements.
Results
Of the 1031 studies identified, and following removal of duplicates,
screening of titles and abstracts, and full-text review, seven studies
were included in the analysis (Figure 1). The main findings are narratively
summarized in Table 2.
Study characteristics
All studies used descriptive designs, with no interventional studies re­
ported.14–20 Most studies were conducted in high-income northern
hemisphere countries between 1995 and 2020.14–20 Settings varied
across the included studies. Four studies were conducted in acute hos­
pitals;15–18 one study focused on patients who had died in an institu­
tional setting (hospital, nursing home, or residential care);20 one
study considered patients at home during their last 3 months of
life;19 and one study included any setting.14 Sample sizes ranged
from 15 to 237 participants, with double the number of family mem­
bers (n = 697) included compared with patients (n = 339). Six studies
448 N. Govind et al.

Identification Records removed before

Citations identified from screening:
Databases (n =1031) Duplicate records removed (n
= 18)

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Citations screened against title
and abstract Citations excluded based on title
(n =1015) (n =912)
Screening

Full text studies assessed for

eligibility
(n =103)
96 full text studies excluded

Reasons:

18 did not include palliative care

25 qualitative studies
29 not stroke patients and/or their
families
16 conference abstracts
8 Non-English
Included

Studies included in review

(n =7)

Figure 1 Study flow diagram.

included family,14,15,17–20 and one included patients only.16 Three stud­
ies reported data on sub-samples from a larger survey.14,17,18
Methodological quality and data analysis
Study quality varied (Table 2). In general, studies lacked sample size jus­
tification and some items in the quality assessment tool were not re­
ported across studies. Variations in settings and outcome precluded
meta-analysis.
Demographics: patients post-stroke
Five of the studies reported the mean age of patients’ post-stroke to be
over 75 years,14,15,17–19 with more than half reporting equal numbers of
males and females.15–17,19 Ischaemic stroke was the main type of stroke
reported.16–18 Co-morbidities were common, Burton et al.16 reporting
that majority of stroke patients had two or more co-morbidities;
however, the types of co-morbidities were not reported. Stroke sever­
ity was measured by National Institutes of Health Stroke Scale (NIHSS)
in three studies, with the median ranging from 11 to 20 indicating mod­
erately severe to severe stroke.16–18 Level of disability was determined
using the Barthel Index in two studies,16,19 one study on admission16
and one as part of the survey completed by the family post-death.19
Three studies reported survival time from stroke admission to
death,14,15,18 7–8 days was the range reported by two studies15,18
and the other identified that 53% of patients died within 30 days
post-stroke.14
Demographics: family
Family members tended to be younger than the patients and were pre­
dominantly a spouse or adult child,14,16,18–20 and female family partici­
pants had a greater representation in three studies.18–20
Table 2 Summary of studies included in the review

Author, year, Aim Quantitative design and method Participants and setting Outcome measures Key findings Quality
study location assessment
(NHLBI)
....................................................................................................................................................................................................................................................................
Addington et al.14 To describe the quality of Quantitative descriptive design N = 237 Regional Study of Care for During the last year of life, >50% of NHLBI: fair
(1995) care received by stroke Retrospective interview surveys based Family and carers of persons for the Dying adapted version patients who died from stroke did rating
England, UK patients in the last year of on proxy viewpoints (cross-sectional) whom stroke was the main cause of interview schedule used not receive optimal symptom
life. Main focus was was performed by trained interviewers of death (1990) by Cartwright and Seale management.
symptom control, Population was identified from the All settings (1990) that covered the Families reported difficulties
communication with larger survey—secondary analysis last year of life accessing information relating to the
Palliative and end of life care post-stroke

health professionals, and Addressed questions in patient’s condition and dissatisfaction

hospital care received. relation to the with communication interactions
experiences, needs, with health professionals
support and satisfaction of
care received by patients
and families
The instrument used was
an adapted version of the
interview survey by
Cartwright and Seale that
covered the last year of
life
Blacquiere et al.15 To determine how families Quantitative descriptive design N = 15 Death in hospital format of Overall satisfaction was high. NHLBI: fair
(2013) perceived palliative care Prospective/retrospective Families of patients who died the after death bereaved Families were most satisfied with rating
Canada after stroke. questionnaire completed 4–6 weeks from an acute stroke and family member interview. management of pain and dyspnoea.
after the patient’s death via phone with received palliative care before Scale that measures Less satisfied with management of
a trained interviewer. death (2010) satisfaction across several anxiety and depression.
Setting: neurology and domains (0–10) Decision-making
neurosurgery services of one Non-validated stroke Care of the family, sharing of
hospital questions—Nasogastric information, stroke-specific domains
feeding, intravenous less satisfied feeding, hydration, and
therapy, communication communication
with aphasic patients.
Burton et al.16 To identify the palliative care Quantitative descriptive design N = 191 Needs assessed using the Patients reported a high incidence needs NHLBI: good
(2010) needs in a consecutive Prospective questionnaire was Adult patients post-acute stroke Sheffield Profile for for palliative care. Communication, rating
England, UK cohort of acute stroke completed by patients or family (excluding SAH) Assessment and Referral physical and fatigue-related
patients member if patient was unable to (June 2006–Oct 2007) to Care (SPARC) and was symptoms, psychological distress,
complete or by an interviewer Setting: One UK city, two acute completed like a concerns about dependence and
hospitals questionnaire or disability, and impact on family were
interview moderate-significant problems
To examine the association Quantitative descriptive design N = 148 Presence of patient ACP was associated with earlier

Continued
449

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Table 2 Continued
Author, year, Aim
study location
....................................................................................................................................................................................................................................................................
Lank et al.17 (2020) between advanced care
USA planning (ACP) and
transitions to comfort
measures during stroke
hospitalization.
Markovitz et al.18 To assess family surrogate
(2020) perceptions of quality of
USA end-of-life care (QEOLC)
in stroke and explore
factors associated with
quality
Young et al.19 To assess the level of need
(2008) and service provision for
England, UK people who died from a
stroke and had lived at
home during the last 3
months of their life
Young et al.20 To explore the determinants Quantitative descriptive design
(2009) of satisfaction with care at
England, UK the end of life for people
dying from a stroke in a
hospital, nursing home, or
residential care setting
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450
Quantitative design and method Participants and setting Outcome measures Key findings Quality
assessment
(NHLBI)
Interviewer-administered Hospitalized patients post-stroke pre-stroke (Rankin scale) transition to CMO among acute NHLBI: fair
Participants were identified via a larger (45 years and older) with OASIS ACP (none; informal stroke patients with surrogate rating
longitudinal study Outcomes Among eligible surrogates (April 2016– conversations only; or decision-makers
Surrogate decision-makers in Stroke Sept 2018) formal documentation) There was no difference between
(OASIS). All analysis was conducted at Setting: One US city, two acute Time of admission— formal documentation and informal
the patient level. hospitals transitions to comfort conversations on time to comfort
measures only (CMO) measures post-stroke
Relationship between
ACP and time to
transitions to CMO
Quantitative descriptive design N = 79 QEOLC scale—10 item The overall QEOLC was high (median NHLBI: fair
Interviewer-administered survey with OASIS eligible surrogates that family version 8.3). However, 4 of 10 items had rating
surrogate decision-makers followed by were decision-makers for Three selected items from >25% of surrogates responded ‘not
cross-sectional analysis to assess patients that died from an acute the quality of dying and applicable’ or ‘don’t know’
surrogate perceptions. stroke. death scale—that No patient or surrogate factors were
Participants were identified via a larger (April 2016–July 2018) addressed the overall associated with QEOLC
longitudinal study Outcomes Among Setting: One US city, two acute quality of care and quality
Surrogate decision-makers in Stroke hospitals of dying
(OASIS)
Quantitative descriptive design N = 53 stroke-specific VOICES Patients dying at home have needs for NHLBI: fair
Retrospective postal survey (VOICES II) Random sample of family survey—views of informal palliative care that are not been rating
of bereaved families (proxy viewpoints) members who had registered a carers’ evaluation of adequately meet by health and social
followed by exploratory analyses to stroke death across four Primary services (postal services. Majority of patients
assess the level of need and service Care Trusts in London and questionnaire) (VOICES continue to be reliant on informal
provision in the last 3 months and 3 days reported that the deceased had II) carers for their personal care and
of life lived at home during their last 3 domestic tasks due to physical and
months and had been unwell for cognitive impairments
more than 1 month (2003)
N = 183 Stroke-specific VOICES Families who were active in discussions NHLBI good
Retrospective postal survey (VOICES II) Random sample of family survey—views of informal with nurses and doctors and felt that rating
of bereaved families (proxy viewpoints) members who had registered a carers’ evaluation of the staff had adequate knowledge of
followed by exploratory analyses to stroke death across four primary services (postal the patient’s condition increased
identify determinants of satisfaction in care trusts in London and questionnaire) (VOICES satisfaction.
the last 3 months and 3 days of life reported that the deceased had II) Individualized end-of-life care and
died in an institutional setting involving family in decisions about
(hospital, nursing home or treatment were predictors of
residential care) (2003) satisfaction.
N. Govind et al.
Palliative and end of life care post-stroke
Table 3 Instruments used in the included studies
Instrument
....................................................................................................................................................................................................
Regional Study of Care for the Dying (RSCD)
The Death-in-Hospital format of the After-Death Bereaved Family
Member Interview survey tool
The Sheffield Profile for Assessment and Referral to Care (SPARC) a
screening tool for clinical assessment of supportive and palliative-care
needs
10-item family version of the Quality of End-of-Life Care (QEOLC) scale.
VOICES II, a stroke-specific version of the Views of Informal Carers
Evaluation of Services (VOICES) postal survey.
Instruments used
Across the included studies, five instruments (Table 3) were used to
measure variable reported outcomes, including symptom burden, sat­
isfaction of care, screening of palliative care needs, quality of end of
life, circumstances surrounding death, and experiences with health
professionals.
No interventional studies were identified, and meta-analysis was not
possible due to heterogeneity. Using the elements in the definition of a
palliative care intervention, we analysed the interventions described in
the included studies. Therefore, the elements of palliative care interven­
tions and end-of-life care were employed as the most meaningful unit of
analysis. The quantitative data collected from patients’ post-stroke and
their families were generated into the following three elements: (i)
symptom burden and satisfaction; (ii) loss of autonomy at the end of
life; and (iii) acknowledging uncertainty.
Symptom burden and satisfaction
Two studies assessed palliative symptoms experienced by patients
post-stroke.14,16 Burton et al.16 who used the Sheffield Profile for
Assessment and Referral to Care (SPARC) tool during the acute post-
stroke phase (n = 191) found that more than half of this cohort experi­
enced moderate to significant problems associated with feeling weak
and tired during acute hospitalization, and/or pain, memory loss, head­
ache, restlessness, or bladder weakness.16 Mobility and the fear of falling
were highly significant problems and, in combination with speech chal­
lenges, represented the clinical presentation of this cohort.
Psychological distress including anxiety, low mood, and loneliness was
experienced in nearly half of patients, and 25% had concerns about
451
Descriptor
RSCD provided 20 English health districts an audit of local services for the dying and
addressed questions in relation to the experiences, needs, support, and
satisfaction of care received by patients and families.21 The instrument used was
an adapted version of the interview survey by Cartwright and Seale that covered
the last year of life22 and did not specifically focus on stroke patients
This tool is a validated survey tool used for palliative research.23 Overall satisfaction
was measured on a scale of 1–10. Greater satisfaction was equated with a higher
score. Non-validated stroke-specific questions were also included that focused
on intravenous fluids, nasogastric feeding and communication with aphasic
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patients
The SPARC screening tool is a 45-item patient-rated tool that focuses on physical
symptoms, psychological issues, religious and spiritual issues, independence and
activity issues, and family and social issues, regardless of diagnosis.24 This is not a
stroke-specific instrument
This validated scale assesses satisfaction of care received at the end of life and is not
stroke specific.25The authors of this study included a ‘don’t know’ option as well
as ‘NA’ (not applicable). The scale was scored 0–10, and a higher score indicated
a better rating
The VOICES survey was developed after completion of the RSCD and was
demonstrated in a randomized control trial to be an acceptable alternative to
interviews in post-bereavement surveys.26 There were nine sections to the
VOICES II survey that included help at home, general practitioners, nursing and
residential home care, last hospital admission, symptoms and treatment, care in
the last 3 days of life, circumstances surrounding death, and an adapted form of
the Barthel activities of daily living index
death and dying.16 Addington-Hall et al.14 identified that the main symp­
toms of at least 50% of patients’ post-stroke (reported by family mem­
bers) were pain, confusion, incontinence (urinary and faecal), low
mood, sleeplessness, and dyspnoea during the patient’s last year of
life. However, the instrument used in this study, Regional Study of
Care for the Dying, did not include stroke-specific symptoms such as
dysphagia and paralysis.
The four studies that measured ‘satisfaction’ with palliative and
end-of-life care received14,15,18,20 used different instruments, including
an adapted version of the interview survey by Cartwright and Seale
that covered the last year of life;14,27 the validated Death-in-Hospital
format of the After-Death Bereaved Family Member Interview;15 the
10-item family version of the Quality of End-of-Life Care
(QEOLC);18 and Views of Informal Carers Evaluation of Services
(VOICES) II, a stroke-specific version of the VOICES postal survey.19,20
Overall, during initial hospitalization, families were satisfied with the
post-stroke management of pain and dyspnoea, but less satisfied with
management of anxiety and depression and the lack of information re­
garding analgesia.15 They were also less satisfied with stroke-specific
care such as feeding, hydration, and communication with patients
with aphasia.15
During the last year of the patient’s life, families (n = 237) rated the
quality of care provided by nurses higher than that provided by doctors
(45 vs. 29%).14 Overall, families were most satisfied when care at time
of death was respectful and personal.14 Families were more likely to de­
scribe care received in hospital as ‘excellent’ if both the patient and the
family needs were met.20 The provision of individualized care increased
satisfaction, and families felt that the patient had died in the right
place.20 Markovitz et al.18 reported that an increase in stroke severity
452
measured by NIHSS was associated with a lower QEOLC rating (cor­
relation coefficient = 0.25). No other factors were associated with
QEOLC. Overall, the majority of families surveyed rated the quality
of care received at end of life as high (median 8.3).18 However, 4 of
the 10 QEOLC items were not answered by more than 25% of families
who felt that the questions did not apply to the patient’s situation (i.e.
not applicable or do not know), which may have impacted on the re­
sults and may indicate that this tool is not suitable for this population.18
Only 15% of patients in this study were able to participate in treatment
decisions.18
Loss of autonomy at the end of life
Dependence and disability concerns were reported in over two-thirds
of acute stroke patients admitted to hospital, and over 50% were wor­
ried about the impact of stroke on family life.16 Young et al.19 surveyed
families to evaluate the level of need and service provision required by
the person post-stroke during the last 3 months of life. More than half
(58%) identified that the patient required assistance with 7 or more of
the 10 listed activities of daily living. The majority needed assistance
with bathing, dressing, moving, and/or oral care.19 Burton et al.16 re­
ported that there was a significant interaction between the Barthel
Index, age, and co-morbidities in predicting total SPARC scores and re­
commended that post-stroke patients with a Barthel Index score <15/
20 be screened.
Acknowledging uncertainty
Four studies reported on the communication experiences of families
and patients.14–16,19 Uncertainty related to post-stroke care, gaps in
family understanding, and healthcare professionals being rushed, reluc­
tant, or unavailable to discuss the patient’s care were the characteristics
of ineffective communication interactions during patient’s last year of
life across all settings.14 Nearly 50% of families were dissatisfied with in­
formation provided by healthcare professionals.14 Families wanted to
be informed about prognosis, current condition, and decisions around
care and treatment.14 Families were more satisfied with hospital care
when included in discussions about the patient’s symptoms and transi­
tion to comfort measures. The opportunity to discuss their fears and
concerns was associated with greater satisfaction.20 Families also re­
ported the need for greater attention to their own needs and better
coordination of care.15 Young et al.19 found that 61% (n = 30/49) of
families reported that the patient had communication deficits post-
stroke. Burton et al.16 reported that 80% of patients experienced
some form of communication difficulties post-acute stroke.
The association between communication, advanced care planning
(ACP), and forgoing life-sustaining interventions post-stroke were re­
ported in one included study.17 Forty-four per cent of families reported
informal conversations occurred with healthcare professionals about
ACP and transitioning to comfort measures, 38% of families reported
being shown formal ACP hospital documentation, and 18% of families
had no ACP conversations with healthcare professionals during the pa­
tient’s hospitalization. The median time to comfort measures for pa­
tients with formal ACP documentation was 4 days (n = 56) and 10
days for patients without an advanced care plan.17 After adjustment
for age, severity, and baseline disability, informal conversations alone
and formal documentation were associated with earlier transition to
comfort measures compared with the patients with no ACP during ini­
tial acute stroke hospitalization.17 There was no difference in time to
comfort measures between those shown formal documentation and
those having informal conversations.17 In the study by Markovitz
et al.,18 38% of family members reported that the patient did not
have a formal advanced care plan; however, 88.6% reported having a
discussion with the patient about their preferences for treatment.18
N. Govind et al.
Discussion
This systematic review found that in high-income countries, a central
concern post-stroke that patients experience is diverse symptom bur­
den. In this review, the key reported palliative care symptoms included
pain, fatigue, dyspnoea, memory loss, psychological distress, incontinence,
increased dependence, and mobility restrictions. A recent Chinese
study28 reported that greater than two-thirds of patients suffered from
at least 10 co-occurring symptoms within 1 year following their first-ever
stroke and that the symptom burden of patients post-stroke is equal to
or potentially greater than that for patients with cancer.
Communicating effectively about palliative care post-stroke is compli­
cated by uncertainty about prognosis and illness trajectory. Families were
dissatisfied with information provided by healthcare professionals and
wanted to be included in patient care discussions. As ∼20% of patients
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die within 30 days post-stroke, there is limited time for patients and fam­
ilies to understand prognosis and make care decisions. Connelly et al.29
identified that it is important that healthcare professionals have open,
honest conversations with patients and their families even if prognosis
is uncertain. Additionally, Payne et al.30 reported that families wished
to be included in an ongoing conversation, the presence of which, we
have found, was linked to greater satisfaction with the care received.
This review supports the findings from the recent meta-synthesis
undertaken by Connolly et al.29 and illustrates that the current limited
evidence predominantly focuses on end-of-life care and transition to
comfort measures. Palliative care interventions such as identification
of palliative care need and effective communication should be inte­
grated with other evidence-based treatments,31 but quality interven­
tional studies to guide clinical practice integration are lacking. A shift
in focus is required, so that palliative care interventions are recognized
as important to optimize quality of life of patients’ post-stroke.9 All
health professionals should maintain fundamental skills in palliative
symptom assessment and communication, but currently there are lim­
ited quantitative clinical data collected from post-stroke patients with
palliative care needs and their families to guide clinical practice.
Strengths and limitations
The focus on patient and family data alone ensures that this review re­
ports their perspectives, highlighting current gaps in research and the
need for future studies exploring palliative care interventions for pa­
tients’ post-stroke. A systematic methodology was employed with clear
inclusion and exclusion criteria; however, potentially relevant studies
may have been inadvertently omitted.
There are several limitations to this review. Firstly, only seven studies
were included, which limits the potential generalizability of the evidence
and none were randomized controlled trials. Secondly, only descriptive
data were reported, and therefore, this review should be seen as inform­
ative rather than definitive. Thirdly, the focus on purely quantitative data
allows discrete categorical data only and needs to be considered along
with the recent published meta-synthesis.29 Fourthly, the narrative ap­
proach to synthesis can include subjectivity in relation to theming and in­
terpretation of data, although group consensus was sought to minimize
this risk. Lastly, limiting studies to the English language introduced a lan­
guage bias. The sample involved in this review is biased towards western
developed world cultures and likely does not represent low- to
middle-income countries. This limitation lends itself to the possibility
that diverse cultural contexts may be missing. Differences exist in the
healthcare structures of different countries, and support needs identified
in one region may not be lacking in another; this should be taken into con­
sideration when interpreting the results of this review. While the patient
perspectives have been captured, not all studies reported data collected
from patients. Limited data from patient participants were also identified
in the meta-synthesis by Connolly et al.,29 highlighting the need for future
studies that focus on obtaining patients’ voices.
Palliative and end of life care post-stroke
Conclusion
For a proportion of patients’ post-stroke, access to palliative care is a
critical but often underestimated aspect of care. In part, this reality re­
flects the limited empirical evidence available to guide clinical practice.
Most of the current evidence focuses on the provision of care during
the final days and hours of life, or end-of-life care, with little evidence
to guide the integration of palliative care into post-stroke clinical
care, especially for patients with an uncertain prognosis. The lack of evi­
dence makes it difficult to implement quality palliative care post-stroke
especially in the context of prognostic uncertainty, which impacts on
how decisions are communicated to the patients and their families.
Palliative care and stroke would benefit from well-designed targeted in­
terventions to determine strategies that address the diverse palliative
needs of this patient population. From both patient and family perspec­
tives, these include how to further improve symptom burden and care
satisfaction, how best to acknowledge prognostic uncertainty, and how
to initiate conversations and communicate effectively. Acute stroke is
sudden, unexpected, and life-changing, and therefore, a better under­
standing of how these challenges impact care decisions and long-term
care outcomes ought to be the focus of future research.
Supplementary material
Supplementary material is available at European Journal of Cardiovascular
Nursing online.
Acknowledgements
The authors would like to thank Rosie Glynn, Health Librarian for her
valuable assistance with the literature search.
Funding
N.G. is funded through a National Health and Medical Research Council
Postgraduate Scholarship (2021–2024 Reference: GNT2005367). C.F. is
funded through a National Health and Medical Research Council
Emerging Leadership Fellowship (2020–2025 Reference: GNT1196262).
Conflict of interest: The author(s) declared no potential conflicts of
interest with respect to the authorship of this article.
Data availability
All data are incorporated into the article and its online supplementary
material.
References
1. GBD 2016 Lifetime Risk of Stroke Collaborators. Global, regional, and country-specific
lifetime risks of stroke, 1990 and 2016. N Engl J Med 2018;379:2429–2437.
2. Roberts SE, Goldacre MJ. Case fatality rates after admission to hospital with stroke:
linked database study. BMJ 2003;326:193–194.
3. Bray BD, Paley L, Hoffman A, James M, Gompertz P, Wolfe CDA, Hemingway H, Rudd
AG. Socioeconomic disparities in first stroke incidence, quality of care, and survival: a
nationwide registry-based cohort study of 44 million adults in England. Lancet Public
Health 2018;3:e185–e193.
4. Creutzfeldt CJ, Longstreth WT, Holloway RG. Predicting decline and survival in severe
acute brain injury: the fourth trajectory. BMJ 2015;351:h3904.
5. Ernecoff NC, Check D, Bannon M, Hanson LC, Dionne-Odom JN, Corbelli J,
Klein-Fedyshin M, Schenker Y, Zimmermann C, Arnold RM, Kavalieratos D. Comparing
specialty and primary palliative care interventions: analysis of a systematic review.
J Palliat Med 2020;23:389–396.
6. World Health Organization. WHO definition of palliative care. http://www.who.int/
cancer/palliative/definition/en (25 November 2021).
7. Braun LT, Grady KL, Kutner JS, Adler E, Berlinger N, Boss R, Butler J, Enguidanos S,
Friebert S, Gardner TJ, Higgins P, Holloway R, Konig M, Meier D, Morrissey MB,
Quest TE, Wiegand DL, Coombs-Lee B, Fitchett G, Gupta C, Roach WH Jr; American
Heart Association Advocacy Coordinating Committee. Palliative care and cardiovascular
453
disease and stroke: a policy statement from the American Heart Association/American
Stroke Association. Circulation 2016;134:e198–e225.
8. Hoerger M, Greer JA, Jackson VA, Park ER, Pirl WF, El-Jawahri A, Gallagher ER, Hagan T,
Jacobsen J, Perry LM, Temel JS. Defining the elements of early palliative care that are
associated with patient-reported outcomes and the delivery of end-of-life care. J Clin
Oncol 2018;36:1096–1102.
9. Creutzfeldt CJ, Holloway RG, Curtis JR. Palliative care: a core competency for stroke
neurologists. Stroke 2015;46:2714–2719.
10. Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, Shamseer L,
Tetzlaff JM, Akl EA, Brennan SE, Chou R, Glanville J, Grimshaw JM, Hróbjartsson A, Lalu
MM, Li T, Loder EW, Mayo-Wilson E, McDonald S, McGuinness LA, Stewart LA,
Thomas J, Tricco AC, Welch VA, Whiting P, Moher D. The PRISMA 2020 statement:
an updated guideline for reporting systematic reviews. BMJ 2021:n71. doi: 10.1136/bmj.n71
11. Covidence systematic review software. Veritas Health Innovation. www.covidence.
org (15 June 2021).
12. National Heart, Lung, and Blood Institute. Study Quality Assessment Tools. https://
www.nhlbi.nih.gov/health-topics/study-quality-assessment-tools (25 May 2021).
Downloaded from https://academic.oup.com/eurjcn/article/22/5/445/6850015 by guest on 03 January 2024
13. Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, Britten N, Roen K, Duffy
S. Guidance on the Conduct of Narrative Synthesis in Systematic Reviews: A Product of the
ESRC Methods Programme (Version I). Lancaster, UK: University of Lancaster; 2006.
14. Addington-Hall J, Lay M, Altmann D, McCarthy M. Symptom control, communication
with health professionals, and hospital care of stroke patients in the last year of life
as reported by surviving family, friends, and officials. Stroke 1995;26:2242–2248.
15. Blacquiere D, Bhimji K, Meggison H, Sinclair J, Sharma M. Satisfaction with palliative care
after stroke: a prospective cohort study. Stroke 2013;44:2617–2619.
16. Burton CR, Payne S, Addington-Hall J, Jones A. The palliative care needs of acute stroke
patients: a prospective study of hospital admissions. Age Ageing 2010;39:554–559.
17. Lank RJ, Shafie-Khorassani F, Zhang X, Ortiz C, Kim S, Case E, Creutzfeldt CJ, Morgenstern
LB, Zahuranec DB. Advance care planning and transitions to comfort measures after
stroke. J Palliat Med 2021;24:1191–1196. doi: 10.1089/jpm.2020.0587
18. Markovitz N, Morgenstern LB, Shafie-Khorassani F, Cornett BA, Kim S, Ortiz C, Lank RJ,
Case E, Zahuranec DB. Family perceptions of quality of end-of-life care in stroke. Palliat
Med Rep 2020;1:129–134.
19. Young AJ, Rogers A, Addington-Hall JM. The quality and adequacy of care received at
home in the last 3 months of life by people who died following a stroke: a retrospective
survey of surviving family and friends using the Views of Informal Carers Evaluation of
Services questionnaire. Health Soc Care Community 2008;16:419–428.
20. Young AJ, Rogers A, Dent L, Addington-Hall JM. Experiences of hospital care reported
by bereaved relatives of patients after a stroke: a retrospective survey using the VOICES
questionnaire. J Adv Nurs 2009;65:2161.
21. Addington-Hall J, Mccarthy M. Regional study of care for the dying: methods and sample
characteristics. Palliat Med 1995;9:27–35.
22. Cartwright A. The Natural History of a Survey: An Account of the Methodological Issues
Encountered in a Study of Life Before Death. London, UK: London Institute for Social
Studies in Medical Care;1990.
23. Teno JM, Clarridge B, Casey V, Edgman-Levitan S, Fowler J. Validation of toolkit after-death
bereaved family member interview. J Pain Symptom Manage 2001;22:752–758.
24. Ahmed N, Bestall JC, Payne SA, Noble B, Ahmedzai SH. The use of cognitive interview­
ing methodology in the design and testing of a screening tool for supportive and pallia­
tive care needs. Support Care Cancer 2009;17:665–673.
25. Engelberg RA, Downey L, Wenrich MD, Carline JD, Silvestri GA, Dotolo D, Nielsen EL,
Curtis JR. Measuring the quality of end-of-life care. J Pain Symp Manag 2010;39:951–971.
26. Addington-Hall J, Walker L, Jones C, Karlsen S, McCarthy M. A randomised controlled
trial of postal versus interviewer administration of a questionnaire measuring satisfac­
tion with, and use of, services received in the year before death. J Epidemiol
Community Health 1998;52:802–807.
27. Cartwright A, Seale C. The Natural History of a Survey: An Account of the Methodological
Issues Encountered in a Study of Life Before Death. London: London Institute for Social
Studies in Medical Care; 1990.
28. Li Z, Shi D, Yang J, Liu B-Z, Xia H. Symptom experience and symptom burden of pa­
tients following first-ever stroke within 1 year: a cross-sectional study. Neural Regen
Res 2018;13:1907.
29. Connolly T, Coats H, Desanto K, Jones J. The experience of uncertainty for patients,
families and healthcare providers in post-stroke palliative and end-of-life care: a qualita­
tive meta-synthesis. Age Ageing 2020;50:534–545.
30. Payne S, Burton C, Addington-Hall J, Jones A. End-of-life issues in acute stroke care: a
qualitative study of the experiences and preferences of patients and families. Palliat
Med 2010;24:146–153.
31. Holloway RG, Arnold RM, Creutzfeldt CJ, Lewis EF, Lutz BJ, McCann RM, Rabinstein
AA, Saposnik G, Sheth KN, Zahuranec DB, Zipfel GJ, Zorowitz RD; American Heart
Association Stroke Council, Council on Cardiovascular and Stroke Nursing, and
Council on Clinical Cardiology. Palliative and end-of-life care in stroke: a statement
for healthcare professionals from the American Heart Association/American Stroke
Association. Stroke 2014;45:1887–1916.