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R E S E A R C H A R T I C L E Open Access
End-of-life decisions in acute stroke
patients: an observational cohort study
Angelika Alonso
1*
, Anne D. Ebert
1
, Dorothee Dörr
2
, Dieter Buchheidt
3
, Michael G. Hennerici
1
and Kristina Szabo
1
Abstract
Background: Crucial issues of modern stroke care include best practice end-of-life-decision (EOLD)-making procedures
and the provision of high-quality palliative care for dying stroke patients.
Methods: We retrospectively analyzed records of those patients who died over a 4-year period (2011–2014) on
our Stroke Unit concerning EOLD, focusing on the factors that most probably guided decisions to induce
limitation of life-sustaining therapy and subsequently end-of-life-care procedures thereafter.
Results: Of all patients treated at our Stroke Unit, 120 (2.71 %) died. In 101 (86.3 %), a do-not-resuscitate-order
(DNRO) was made during early treatment. A decision to withdraw/withhold further life supportive therapy was
made in 40 patients (34.2 %) after a mean of 5.0 days (range 0–29). Overall patient death occurred after a mean
time of 7.0 days (range 1–30) and 2.6 days after therapy restrictions. Disturbance of consciousness at presentation,
dysphagia on day 1 and large supratentorial stroke were possible indicators of decisions to therapeutic withdrawing/
withholding. Proceedings of EOL care in these patients were heterogeneous; in most cases monitoring (95 %), medical
procedures (90 %), oral medication (88 %), parenteral nutrition (98 %) and antibiotic therapy (86 %) were either not
ordered or withdrawn, however IV fluids were continued in all patients.
Conclusions: A high percentage of stroke patients were rated as terminally ill and died in the course of caregiving.
Disturbance of consciousness at presentation, dysphagia on day 1 and large supratentorial stroke facilitated decisions
to change therapeutic goals thus initiating end-of-life-care. However, there is further need to foster research on this
field in order to ameliorate outcome prognostication, to understand the dynamics of EOLD-making procedures and to
educate staff to provide high-quality patient-centred palliative care in stroke medicine.
Keywords: Stroke, End-of-life decisions, Palliative care, Advance directives, Stroke mortality
Background
Despite considerable advances in acute stroke therapy
and a decline of the relative rate of stroke deaths [1],
stroke remains the third to fourth most common cause
of death in the United States and Europe [1–3]. In 2014,
the age-adjusted death rate for stroke as an underlying
cause of death in the United States was 36.5 per 100,000
[4], with approximately 50 % of stroke deaths occurring
in hospital [5]. In 2011, reported admission-based case-
fatality rates for ischemic stroke in Germany were 6.7
per 100 discharges, for intracerebral haemorrhage as
high as 17.5 per 100 discharges, respectively [2]. In the
light of increasing hospitalizations for cerebrovascular
diseases [2], palliative care and end-of-life decisions
(EOLD) are more and more recognized as a crucial part
of modern stroke care. This is even more relevant, as re-
cent data suggest that a substantial proportion of in-
patient deaths occur in the context of withdrawal or
withholding of life-sustaining therapies in severe stroke
patients [6, 7].
EOLD in stroke patients include a broad array of
choices ranging from do-not-resuscitate-orders (DNRO)
[8, 9], combined with continuance of any other life-
supporting measures, to symptom control only and
withdrawal or withholding of further therapy [10, 11].
However, the implication of a particular EOLD on the
proceedings thereafter remains largely unclear. In a large
* Correspondence: alonso@neuro.ma.uni-heidelberg.de
1
Department of Neurology, UniversitätsMedizin Mannheim, University of
Heidelberg, 68167 Mannheim, Germany
Full list of author information is available at the end of the article
© 2016 Alonso et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
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Alonso et al. BMC Palliative Care (2016) 15:38
DOI 10.1186/s12904-016-0113-8
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
cohort of stroke patients, a DNRO was associated with
an increased risk of death, possibly reflecting less inten-
sive care once a DNRO was made [12]. Moreover, in pa-
tients with life-threatening stroke, a palliative care
approach might be chosen in order to improve quality of
life. To date, there is a broad consensus that there is an
enormous but still underestimated need for palliative
care in dying stroke patients [13–15]. Whereas end-of-
life care is well established in diseases such as cancer or
advanced heart disease, research on end-of-life care has
been relatively neglected in stroke populations and
evaluation of end-of-life care processes in stroke has to
date been very limited [16–18]. Moreover, the palliative
care needs of acute stroke patients may be very different
from those in advanced stages of other chronic diseases
[19]. According to a recent scientific statement from the
American Heart Association/American Stroke Associ-
ation, palliative care in stroke should cover complex de-
cision making in terms of uncertainties regarding stroke
prognosis and putative patient’s preferences, alignment
of treatment with goals and symptom control [13]. Des-
pite elaborate recommendations addressing stroke sys-
tem care and provider teams, standard operating
procedures regarding diagnostic and therapeutic man-
agement of dying stroke patients are lacking, possibly
due to the complexity of end-of-life issues.
Our study aimed to describe and analyze EOLD of
dying stroke patients who died during the in-hospital
phase on the Stroke Unit, focusing on possible factors
that could indicate the decision for a transition from
life-sustaining therapy to withdrawal or withholding of
defined diagnostic or therapeutic measures, and the im-
pact of this decision on the proceedings thereafter.
Insight from this study will help to raise awareness for
palliative care issues in stroke patients and aid the devel-
opment of recommendations for stroke-specific pallia-
tive therapy and EOLD.
Methods
From our prospectively collected electronic stroke data-
base we retrospectively identified and analyzed the
charts of all patients (n= 4425) admitted to our 29 bed
comprehensive Stroke Unit (SU) with the diagnosis of is-
chemic stroke or intracerebral hemorrhage (ICH) be-
tween January 2011 and December 2014 who died
during the course of hospital treatment. Patient data was
extracted from the electronic medical records to a spe-
cially designed data collection form by two experienced
stroke physicians (A.A. and K.S.). In cases of discrep-
ancy, the final interpretation of the data was reached by
mutual agreement. In this stroke database, all clinical
data and technical investigations were recorded and doc-
umented according to a standardized acute stroke care
protocol including clinical examination at regular
intervals according to standard Stroke Unit require-
ments in Germany [20]. Among others, all patients also
received an assessment of dysphagia on day 1 assessed
on the basis of the Dysphagia Outcome and Severity
Scale [21] and were classified as either severe, mild to
moderate or normal by qualified speech therapists. To
avoid any bias, we excluded those 23 patients who were
transferred to the intensive care unit prior to death. In
these patients, EOLD mostly comprised withdrawal/
withholding of intensive care measures such as mechan-
ical ventilation, surgery or circulatory support with cate-
cholamines. These decisions were not in the scope of
the current study. However, demographic and baseline
data as well as an overview on EOLDs in these patients
are available in Additional file 1: Figure S1.
Patient records were further retrospectively analyzed
with respect to the ability of the patients to communi-
cate, information about the patient’s wishes concerning
end-of-life medical treatments, result of individual
EOLD, and medical proceedings thereafter.
Patients were classified according to the ability to com-
municate as either awake and able to communicate nor-
mally, with limited ability to communicate, or not able to
communicate due to disturbed consciousness, dys- or
aphasia by the treating stroke physician in the context of
the neurological examination every 8 h. Patient charts
were reviewed for do-not-resuscitate-orders (DNRO) and
therapy goal modifications with transition to symptom
control care. In this context, the reconstruction of the de-
cision to pursuit a palliative goal was related to the course
of action of withholding or withdrawing life-sustaining
therapies. The analyzed proceedings following particular
EOLD included diagnostic procedures, nutrition, medica-
tion and initiation of palliative measures.
The cause of death was classified into neurological
(stroke-related/herniation), cardiac (therapy refractory
tachy- or bradycardia, acute cardiac insufficiency, acute
myocardial infarction), severe infections (pulmonary, ab-
dominal, CNS) and to otherwise specified or undeter-
mined reasons. Multiple assignments were allowed.
In order to analyze possible indicators of transition to
palliative care, we performed χ
2
-test for categorical and
t-test for metric variables. The impact of dysphagia,
premorbid modified Rankin Scale (mRS) and National
Institute of Health Stroke Scale (NIHSS) at admission
on the decision for palliative care was calculated by
Mann-Whitney-U-test. A pvalue < 0.05 was considered
to indicate statistical significance. Statistical analysis
was performed using the Statistical Package for the
Social Sciences (SPSS), version 22.0. (IBM, USA).
Results
From January 2011 to December 2014, 4425 patients
were admitted to our comprehensive Stroke Unit with
Alonso et al. BMC Palliative Care (2016) 15:38 Page 2 of 9
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the diagnosis of ischemic stroke or intracerebral
hemorrhage (ICH). Of these, 143 patients (3.23 %) died
during the in-hospital phase; 120 of these deaths
(2.71 %) occurred on the Stroke Unit, and 23 on inten-
sive care unit. Three patients had to be excluded due to
insufficient documentation, and therefore records of 117
patients (49 male, 68 female, mean age 81.8 years, range
55–96 years, median premorbid mRS 1.5) were finally
analyzed in the study (Fig. 1). Initial stroke event oc-
curred due to ischemic stroke in 85 (72.6 %) and intrace-
rebral haemorrhage in 32 patients (27.4 %). Most
patients had severe neurological deficits at admission
with a mean NIHSS of 19 (range 0–28). Concerning ad-
vance directives, 39 patients (33.3 %) had a living will
and 45 (38.5 %) had a power of attorney for health care.
At the time of admission, 11 patients (9.4 %) had a legal
guardian due to premorbid impairments of cognitive, so-
cial or other important functions.
In 101 of all analysed patients (86.3 %), a DNRO was
made during the early course of treatment, mostly
within 48 h after admission when the diagnosis of a life-
threatening stroke was established. Nine of the
remaining 16 patients died after cardiopulmonary resus-
citation failure, the other seven died subsequently to
sudden unexpected causes. In none of these patients had
EOLDs been discussed. From the 71 patients with a
DNRO but no further limitation of therapy, only 2 were
able to communicate, 16 had limited ability, and 43 no
ability to communicate at the time of EOLD-making. A
decision to transition to palliative level of care was made
in 40 patients (34.2 %) after a mean time interval of
5.0 days (range 0–29). In all of these 40 cases, a DNRO
was already in place at the time of transition. Out of
these 40, 2 patients had limited ability to communicate,
while the 38 remaining were not able to communicate at
the time of decision making. In patients no longer able
to communicate, the decision to transition to palliative
level of care was either based on an existing living will
or in consent with an attorney for health care or legal
guardian following the presumed patient’s will. In pa-
tients without advance directives or legally designated
patient representatives, a consensus about EOLD was
found between the patient’s family and the attending
neurologists, taking into account the information of the
most likely patient’s will provided by the family.
Overall, patient death occurred after a mean time of
7.0 days (range 1–30) from admission. Patients transi-
tioned to palliative care died after a mean of 2.5 days
thereafter. Survival time of palliative stroke patients and
patients with DNRO or no end-of-life decision did not
differ significantly (mean 7.2 days vs. 6.7 days vs.
8.6 days, p= 0.494). In 78 cases (66.7 %) death was re-
lated directly to stroke. In 13 cases (11.1 %) death was
due to severe infection and in 21 cases (17.9 %) due to
cardiac disorder, whereas the precise cause of death
remained unclear in 9 cases (7.7 %). The baseline char-
acteristics and demographic information of the included
patients are given in Table 1.
Screening:
Stroke admissions 2011-2014
(n = 4425)
Included and analyzed:
Death while on Stroke Unit
(n = 117)
EOLD
(n = 101)
Death after CPR
(n = 9)
Sudden unexpected death
(n =7)
DNRO only
(n = 61)
DNRO + WH/WD of therapy
(n = 40)
Included:
Stroke deaths 2011-2014
(n = 143) Excluded:
Insufficient documentation (n = 3)
Death while on ICU (n = 23)
Fig. 1 Cohort selection. CPR: cardiopulmonary resuscitation; DNRO: do not resuscitate order; WH/WD: withholding or withdrawal
Alonso et al. BMC Palliative Care (2016) 15:38 Page 3 of 9
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Patients transitioned to palliative care with restrictions
of further life-prolonging therapy were slightly older than
those with DNRO or without treatment limitations, how-
ever, age was not significantly associated with the decision
for palliative care (p= 0.194). The proportion of patients
with intracerebral haemorrhage was higher in patients
transitioned to palliative care, but failed to reach statistical
significance (p= 0.132). In patients with ischemic stroke, a
large stroke volume (defined as either infarction of > 2/3
of the ACM territory or complete infarction of the ACA
or ACP territory) was identified as a possible indicator for
initiation of palliative care (p= 0.009). In patients with
ICH, a large blood volume of> 60 ml was found in all pa-
tients transitioned to palliative care, but in only 14/18
without palliative care (p= 0.085). Although bihemispheric
strokes were more frequent in patients transitioned to pal-
liative care, the affected hemisphere as well as a supra- vs.
infratentorial localisation of stroke were equally distrib-
uted between the two groups (p= 0.762 and 0.209, re-
spectively). Interestingly, NIHSS at admission, being high
in most deceased stroke patients, was not different be-
tween the two groups and thus no possible indicator for
the decision to restrict therapy (p=0.115). Likewise, the
proportion of severely affected patients, defined as initial
NIHSS of 16 and higher, was not found to be higher in pa-
tients with the decision for therapy withdrawal or with-
holding (p= 0.317). However, admission to hospital in a
decreased level of consciousness, reflected in > 0 points
for Item 1a of the NIHSS score, was clearly associated
with transition to palliative care (p= 0.028). In 103 pa-
tients, an assessment of swallowing, dysphagia and speech
could be conducted on day 1. In the remaining, dysphagia
assessment on day 1 was not feasible due to decease on
the first day or unavailability of speech therapists. Overall,
the grade of dysphagia was significantly more severe in
those patients with an end-of-life decision therapy restric-
tion (p= 0.026). In order to adjust this finding for the ini-
tial level of consciousness, the influence of dysphagia was
separately analyzed in patients with NIHSS Item1a = 0.
The grade of dysphagia remained a possible indicator of
the decision for therapeutic limitations even in this col-
lective (p= 0.044), indicating that dysphagia should be
considered as an independent variable. Existence of ad-
vance directives was not associated with a transition to
palliative care, although a power of attorney for health
care was more frequent in patients under palliative care
(p= 0.074). Regarding comorbidities, neither the premor-
bid mRS nor the proportion of patients with previously di-
agnosed dementia differed significantly between the group
of patients transitioned to a palliative level of care and
those who were not (p= 0.571 and 0.418, respectively;
Tabl e 2 ).
After transition to palliative care (n= 40), restriction of
diagnostic and therapeutic interventions was heteroge-
neous: Monitoring of vital parameters (95 %) and diag-
nostic procedures (90 %) were discontinued in most
patients. In the palliative care setting, antibiotic therapy
(86 %), nutrition (98 %) and oral medication (88 %) were
never ordered or withdrawn in the majority of patients.
Table 1 Baseline characteristics and demographic information
of patients (n= 117)
Demographics
Mean age, years; (range) 81.8 (55–96)
Gender, n female; (%) 68 (58.1)
Median pre-mRS; (range) 1.5 (0–5)
Diagnosis
Ischemic stroke, n; (%) 85 (72.6)
Intracerebral hemorrhage, n; (%) 32 (27.4)
Stroke severity
NIHSS at admission, median; (range) 19 (0–28)
Comorbidities
Dementia, n; (%) 18 (15.4)
Cancer, n; (%) 22 (18.8)
Renal dialysis, n; (%) 3 (2.6)
Referral to other specialties
Neurosurgeon, n; (%) 15 (12.8)
Otolaryngologist, n; (%) 6 (5.1)
Urologist, n; (%) 6 (5.1)
Oncologist, n; (%) 4 (3.4)
Course
Days to death, median; (range) 7.0 (1–30)
Death expected, n; (%) 90 (76.9)
Death unexpected, n; (%) 27 (23.1)
Therapy aspects
DNRO, n; (%) 101 (86.3)
Unsuccessful CPR, n; (%) 9 (7.7)
Transitioned to palliative care, n; (%) 40 (34.2)
Days to transition, mean; (range) 5 (0–29)
Days from transition to death, mean; (range) 2.6 (0–17)
Advance directive
Living will, n; (%) 39 (33.3)
Power of attorney for health care, n; (%) 45 (38.5)
Legal guardian, n; (%) 11 (9.4)
Cause of death
Complication of stroke, n; (%) 78 (66.7)
Cardiac disorder, n; (%) 21 (17.9)
Severe infection, n; (%) 13 (11.1)
Other/not known, n; (%) 9 (7.7)
Abbreviations: pre-mRS premorbid modified Rankin Scale, NIHSS National
Institute of Health Stroke Scale, DNRO do-not-resuscitate order, CPR
cardiopulmonary resuscitation
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Low-dose heparin was only withdrawn in 9/40 patients.
All patients received IV fluids until death, however,
mostly adapted to palliative care needs. In the last phase
of their lives, 32/40 patients (80 %) were treated with
morphine, 13 patients received other palliative medica-
tion including opioid and non-opioid analgesics and
benzodiazepines (see Fig. 2). Palliative sedation was not
performed in any patient due to deep coma in the dying
phase in 36/40 patients and good symptom control in
the remaining 4/40 patients.
Thirty-five of 61 patients with consented DNRO
(57.4 %), received treatment with palliative medication
during the last 48 h of life, 25 (40.1 %) of these were on
continuous treatment with morphine. Nineteen patients
(31.2 %) had additional palliative medication for symptom
control, mostly opioid and non-opioid analgesics, anti-
emetic drugs and benzodiazepines. None of the 16 pa-
tients who underwent attempts for cardiopulmonal
resuscitation received morphine or other opiods. Two pa-
tients were treated with antiemetics, and one patient re-
ceived neuroleptics due to delirium.
Discussion
The aim of the present study was to analyze end-of-life
stroke care of a cohort of stroke patients who died during
the in-hospital phase on the Stroke Unit after suffering an
acute ischemic or haemorrhagic stroke. We compared the
characteristics of those patients who were transitioned to
palliative care as a result of previous EOLD comprising
withdrawal/withholding of further treatment options with
Table 2 Possible indicators of transition to palliative care
Variable Patients transitioned to palliative care (n= 40) Patients not transitioned to palliative care (n= 77) p-value
Age (mean, standard deviation) 83.2 +/-8.2y 81.1+/-8.6y 0.194
Diagnosis
Ischemic stroke 26 (65 %) 59 (76.6 %) 0.132
Intracranial hemorrhage 14 (35 %) 18 (23.4 %)
Localisation
supratentorial 35 (87.5 %) 69 (89.6 %) 0.762
infratentorial 5 (12.5 %) 8 (10.4 %)
Hemisphere
dominant 14 (35.0 %) 30 (39.0 %)
non-dominant 17 (42.5 %) 39 (50.6 %) 0.209
bihemispheric 9 (22.5 %) 8 (10.4 %)
Stroke volume
Ischemia >2/3 ACM, total ACA or total 22/26 (84.6 %) 33/59 (55.9 %) 0.009
ACP territory
ICH > 60 ml 14/14 (100 %) 14/18 (77.8 %) 0.085
NIHSS at admission
median (range) 19.5 (4-26) 19 (0-28) 0.115
16 and higher 29 (72.5 %) 51 (66.2 %) 0.317
Item 1a (Level of consciousness) >0 17 (42.5 %) 18 (23.4 %) 0.028
Dysphagia assessment on day 1
Normal 4/33 (12.1 %) 18/70 (25.7 %)
Mild to moderate 15/33 (45.5 %) 36/70 (51.4 %) 0.026
Severe 14/33 (42.4 %) 16/70 (22.9 %)
Advance directive
Living will 15 (37.5 %) 24 (31.2 %) 0.538
Power of attorney for health care 20 (50 %) 25 (32.5 %) 0.074
Legal guardian 3 (7.5 %) 8 (10.5 %) 0.747
Pre-mRS (median, range) 2 (0–5) 2 (0–5) 0.578
Dementia 7 (17.5 %) 11 (14.3 %) 0.418
Abbreviations: ACM middle cerebral artery, ACA anterior cerebral artery, ACP posterior cerebral artery, ICH intracranial hemorrhage, NIHSS National Institute of
Health Stroke Scale, pre-mRS premorbid modified Rankin Scale.
Significant p-values are illustrated in bold print
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those who were not. The overall mortality of patients
admitted with either ischemic or haemorrhagic stroke was
3.23 %; 2.71 % of all deaths occurred on the Stroke Unit –
these patients were included into further analyses. The
overall mortality rate is within the range of what can be
expected: According to a recent report based on a
prospective database of 26 hospitals of the Stroke Register
of Northwestern Germany, the observed in-hospital
mortality was 4.6 % in 2008 and remained fairly stable in
the following years [22]. In 86.3 % of our patients who
died during the study period, a DNRO was present at the
time of death, and 34.2 % of all patients died after the de-
cision was made to withdraw or withhold life-sustaining
therapies. According to cohort studies from the United
States and the United Kingdom, the proportion of all ICU
deaths –including those in patients with severe strokes -
preceded by withdrawal of life support, may range from
0 to 96 % [23, 24]. However, in a recent single centre
study, inpatient ischemic stroke deaths occurred almost
exclusively after limitations of potentially life-sustaining
measures, mostly after withdrawal/withholding of mech-
anical ventilation or artificial nutrition/hydration [6]. Simi-
lar data are available for stroke patients who died during
their hospitalization on a Stroke Unit [25]. This and our
data indicate that deaths as a consequence of acute stroke
are mostly anticipated and occur related to correspond-
ing therapeutic decisions. These numbers also indicate
a highly preference-based treatment in severely ill
stroke patients [26]. But as recently pointed out, there
is further need to better understand the marked vari-
ation in the care of these patients and to improve the
patient-centeredness of such decisions [27]. In our
study, deaths occurred early in the course of disease
after a median of 7 days (range 1–30) after stroke onset.
This observation is supported by others: Goldacre et al.
found that of 7,070 deaths within a year of admission
for stroke, 69.4 % were within 30 days, and 91.9 % of
these occurred during the initial admission [28]. Those
patients who obtained a withdrawal of life support died
2.6 days after this decision was made. This suggests
that a change of therapy goal to palliative care occurred
at a point at which the prognosis became obvious and
death was imminent. A study from Blacquiere et al.
reported similar data: Out of 104 patients who died on
the Stroke Unit over a 2-year period, 90 % were palli-
ated and died after a median time of 2.6 days after be-
ginning palliative care [25].
Data of our institution indicate a two-stage practice as
a result of EOLD making with reference to patients after
severe stroke. The first stage includes DNRO with no
further escalation of neuro-intensive treatment (includ-
ing ICU treatment, ventilation) but allowing for poten-
tial neurological recovery. The second stage comprises
an individually composed withdrawal/withholding of fur-
ther life-sustaining treatment options. Those patients
who were transitioned to the latter form of palliative
care were more likely to have a disturbance of con-
sciousness at admission and dysphagia on day 1. They
had more frequently suffered an ischemic stroke affect-
ing > 2/3 of the ACM or the complete ACA and PCA
territories. However, other individual patient factors
such as age, pre-mRS and a previously diagnosed de-
mentia were not different between the two groups. Stat-
istical analysis also prompted no effect of the existence
of advance directives on therapy decision. This suggests,
that prognostic implications as assessed by the medical
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Other palliative medication
Morphine
IV fluid
Low-dose heparin
Oral medication
Parental nutrition/NGF
Antibiotic therapy
Vital parameter monitoring
Diagnostic procedures
continued withdrawn not ordered
Fig. 2 Relative frequencies in percentage of different proceedings after decision to withdraw or withhold therapy (n= 40). NGF: Nasogastric
feeding; IV: intravenous
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team have the highest impact on decision making in
these situations. EOLD in stroke patients are highly
complex as stroke physicians have to consider both as-
pects from “evidence-based”medicine and “preference-
based”medicine when consulting severely affected
stroke patients or their surrogates [29]. Moreover, both
evidence-based medicine and preference-based medicine
each have their specific uncertainties and pitfalls. Con-
cerning evidence-based medicine, EOLD should be
based on an outcome prognosis as precise as possible.
Several stroke prognostic models, mostly incorporating
initial stroke severity and age amongst other factors,
have been proven to be useful in estimating the risk of
early stroke mortality and short-term disability [30–32].
However, the definition of an unfavourable outcome is
inconsistent among different risk scores. On top of that,
preference-sensitive decisions may be biased by the dis-
ability paradox [33]: stroke patients may maintain a good
quality of life despite severe disability whereas healthy
people mostly would rate this outcome as unacceptable.
Since guidelines for the treatment of ischemic stroke do
not provide specific recommendations related to EOLD,
research must focus on improving prognostication and
decision-making process and implementing these in
standard operating procedures.
Since September 2009, German law regulates that ad-
vance directives - if applicable - must be respected in
any decision concerning medical treatment [34]. In our
series, the prevalence of a living will was low, however
similar to reports in other medical specialties [35, 36].
Their presence had no obvious influence on transition
to palliative care. This is in line with a recent study from
the US: The authors reviewed clinical and radiological
records of 28 consecutive patients with a diagnosis of is-
chemic or haemorrhagic stroke treated in a single stroke
centre over a 12-month period. The authors found no
differences in most treatment decisions in patient man-
agement in the presence of advance health care direc-
tives [37]. These findings implicate that advance
directives need to be more than a signed form and must
include specific documentation [38]. This is especially
true for stroke that has its unique illness trajectory with
special implications. Unlike in most chronic diseases, se-
vere stroke occurs unexpectedly, patients present at their
worst, with an uncertain short-term mortality or a likely
long-term disability [39]. And, unlike in other life-
threatening disorders, virtually all communication is
through surrogate decision makers [27]. Therefore, in
order to promote patient-centred end-of-life decision-
making, further efforts to reform the expressiveness of
advance directives are necessary. This implies active
educational programs of the general public and promo-
tion of discussions within families to ensure a best esti-
mation of the patient wishes should it become necessary.
At our institution, any decision made on behalf of
these patients –including the details of a decision to
withdraw/withhold therapy - is based on an individual-
ized personal agreement between the medical team, the
patients and/or their surrogates thus applying the
shared decision-making concept. Due to the lack of ex-
plicit guidelines for palliative care procedures in stroke
patients, our approach comprises likewise partial with-
drawal, in which individually selected therapies might
be stopped, explaining the heterogeneity of the pro-
ceedings. While medical procedures, vital parameter
monitoring, oral medication, parenteral nutrition and
antibiotic therapy might not be ordered, continued or
withdrawn in a high percentage of these patients, our
data indicate inconsistent practice beyond the scope of
“comfort care only”when it comes to low-dose heparin
and IV fluids. However, palliative care in terms of
symptom control was also ordered in over half of pa-
tients not on a therapy restriction order. This shows
that end-of-life care practice is indeed variable,
dependent on the ability to manage very dynamic pro-
cesses, the palliative care qualification of the medical
staff and on the institutional resources. In this context,
the optimal timing of palliative care measures should
not be neglected: A recent AHA/ASA Scientific State-
ment emphasizes that “palliative care should begin at
the diagnosis of an acute, serious, and life-threatening
stroke”[13]. Due to the specific illness trajectories in
stroke with a median time to death of only 7 days, pal-
liative care can be put on a level with end-of-life care
in our cohort. However, it would be interesting to elu-
cidate end-of-life issues in those patients who survived
their life-threatening stroke.
One might wonder, why not in more cases at some
point an active restriction of therapy was decided,
given that all of these patients were severely affected
and eventually died. Possible explanations could be
fast deterioration or difficulties with the surrogates to
accept a change in the focus of care [15]. Could it have
been that imminent death was not recognized in some
patients? Our documentation is not detailed enough
to sufficiently answer these questions. It is obvious
that many details remain unclear and that further edu-
cation and training of the stroke care personnel is es-
sential. Unique characteristics of stroke patients as
compared to patients suffering from cancer or chronic
diseases comprise a sudden onset of severe functional
impairment and possible loss of capacity of decision-
making on the patient’s side as well as uncertainties in
estimating the prognosis of stroke on the physician’s
side. These factors argue forspecificguidelinescon-
cerning palliative care in stroke patients in order to
perceive and meet the needs of severely affected stroke
patients.
Alonso et al. BMC Palliative Care (2016) 15:38 Page 7 of 9
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Conclusions
In summary, our study shows that in the majority of
cases death caused by stroke is expected. In 101 of 117
analysed patients (86.3 %), death occurred either with a
DNRO in place or with an additional decision to with-
draw or withhold life-sustaining therapy. Patients with
therapy restriction had significantly more often a dis-
turbance of consciousness at presentation, dysphagia on
day 1 and large supratentorial strokes when compared to
those with a DNRO only. After withdrawal or withhold-
ing life-sustaining therapy, further proceedings in this
cohort indicate individualized decision making but also
inconsistencies underlining the need for specific pallia-
tive care education and research on this field that guides
stroke physicians in their daily practice regarding differ-
ent aspects in the management of dying stroke patients.
Ethics approval and consent to participate
The local Institutional Review Board (Medizinische
Ethikkommission II der Medizinischen Fakultät Mann-
heim, University of Heidelberg) approved this cohort
study. Approval was obtained to analyse the data from
the database. Patient consent was not required due to
the retrospective nature of the study and the lack of pa-
tient interaction.
Consent for publication
Not applicable.
Availability of data and materials
The datasets supporting the conclusions of this article
are included within the article and its additional file.
Additional file
Additional file 1: Figure S1. a. Baseline characteristics and
demographic information of patients transferred to Intensive Care Unit
(n= 22)
1
. b. End-of-life decisions
3
in dying stroke patients after transferral
to Intensive Care Unit (n= 22)
1
. (PPT 185 kb)
Abbreviations
ACA: anterior cerebral artery; ACM: middle cerebral artery; ACP: posterior
cerebral artery; AHA/ASA: American Heart Association/American Stroke
Association; CPR: cardiopulmonary resuscitation; DNRO: do-not-resuscitate-
order; EOLD: end-of-life decisions; ICH: intracerebral hemorrhage;
ICU: intensive care unit; mRS: modified Rankin Scale; NIHSS: National Institute
of Health Stroke Scale; SU: postroke unit.
Competing interests
The authors declare that they have no competing interests.
Authors’contributions
AA; conceptualization of the study, data acquisition, analysis and
interpretation of the data, drafting and revising the manuscript. Guarantor
for the study. ADE; analysis and interpretation of the data, revising the
manuscript, statistical analysis. DD; analysis and interpretation of the data,
revising the manuscript. DB; analysis and interpretation of the data, revising
the manuscript. MGH; analysis and interpretation of the data, revising of the
manuscript. KS; conceptualization of the study, data acquisition, analysis and
interpretation of the data, drafting and revising the manuscript. All authors
read and approved the final manuscript.
Acknowledgements
Not applicable.
Funding
Not applicable.
Author details
1
Department of Neurology, UniversitätsMedizin Mannheim, University of
Heidelberg, 68167 Mannheim, Germany.
2
Health Care Ethics Committee,
UniversitätsMedizin Mannheim, University of Heidelberg, 68167 Mannheim,
Germany.
3
Department of Hematology and Oncology, UniversitätsMedizin
Mannheim, University of Heidelberg, 68167 Mannheim, Germany.
Received: 7 October 2015 Accepted: 23 March 2016
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