Satisfaction With Palliative Care After Stroke

A Prospective Cohort Study

Dylan Blacquiere, MD; Khadija Bhimji, MD; Hilary Meggison, MD; John Sinclair, MD;
Michael Sharma, MD

Background and PurposeThe determinants of satisfaction for families of acute stroke patients receiving palliative care
have not been extensively studied. We surveyed families to determine how they perceived palliative care after stroke.
MethodsFamilies of patients palliated after ischemic stroke, intracerebral, or subarachnoid hemorrhage were approached.
Four weeks after the patients death, families were administered the AfterDeath Bereaved Family Member Interview to
determine satisfaction with the care provided.
ResultsFifteen families participated. Families were most satisfied with participation in decision making and least satisfied
with attention to emotional needs. In stroke-specific domains, families had less satisfaction with artificial feeding,
hydration, and communication. Overall satisfaction was high (9.04 out of 10).
ConclusionsFamilies of patients receiving palliative care at our institution showed generally high satisfaction with
palliation after stroke; specific domains were identified for improvement. Further study in larger populations is required.
(Stroke. 2013;44:2617-2619.)
Key Words: palliative care personal satisfaction stroke

S troke is the fourth-leading cause of death in the United

States1; 20% of patients die within 1 month of stroke
onset.2 Palliative care is comprehensive care to control pain,
provide comfort, improve quality of life, and manage patients
and families physical, social, psychological, or spiritual needs
during advanced illness.3 The importance of palliative care
after stroke has been increasingly recognized.49 After stroke,
family members must make decisions about palliation in a
short time, but their experiences have not been well examined.
In this prospective cohort, we quantitatively studied experi-
ences of families of patients palliated after acute stroke.
Methods
Patients were recruited from the neurology and neurosurgery services
of our institution during 1 year (fiscal 2010). Patients were includ-
ed if admitted with ischemic stroke or nontraumatic intracerebral/
subarachnoid hemorrhage. Exclusion criteria included admission to
other services, traumatic hemorrhage, primary diagnoses other than
stroke, inability of next-of-kin to communicate in English, or age <18
years. Criteria were disseminated to treating teams, who identified
patients and asked families for permission to be contacted by inves-
tigators. Informed consent was obtained, after which demographic
information was collected from patient records. The study protocol
was approved by the local Research Ethics Board.
Four to 6 weeks after the patients death, next-of-kin were contact-
ed by telephone and interviewed using the Death-in-Hospital format
of the AfterDeath Bereaved Family Member Interview, a validated
questionnaire developed for palliative research.10 The questionnaire,
resource guide, and statistical methodology are available online
(http://www.chcr.brown.edu/pcoc/toolkit.htm). Satisfaction is evalu-
ated across several domains (physical comfort/emotional support,
provision of information/encouragement of shared decision making,
focus on patient needs, encouragement of advanced care planning,
attending to the family, and coordination of care). Questions are
weighted analyzed by group. Each is scored from 0 to 1; higher scores
represent less satisfaction. Overall satisfaction is also measured on a
scale of 1 to 10; higher scores represent greater satisfaction.10 Pilot
nonvalidated questions were asked about nasogastric feeding, intra-
venous fluids, and communication with aphasic patients, and scored
similarly to validated questions (see online-only Data Supplement).
Sample size was based on an estimated 100 deaths because of
stroke per year in our institution, anticipating that 50% of dying pa-
tients would be captured by the study, and a 30% to 40% response
rate to the survey. Statistical analysis of the questionnaire used meth-
ods described in the initial publication.10
Results
During the study period, 80 patients died of stroke; 27 were
identified as candidates and 15 families participated (55%
response rate). Patient and respondent characteristics are
described in the Table. Median age was 86 years, and median
National Institutes of Health Stroke Scale score was 20. Power
of attorney for healthcare was assigned in 80.0% of patients;

Received April 30 2013, accepted May 17, 2013.

From the Division of Neurology, Department of Medicine (D.B.), Division of Palliative Care, Department of Medicine (K.B.), Division of Critical Care,
Department of Medicine (H.M.), and Division of Neurosurgery, Department of Surgery (J.S.), University of Ottawa, Ontario, Canada; and Population
Health Research Institute, McMaster University, Hamilton, Ontario, Canada (M.S.).
The online-only Data Supplement is available with this article at http://stroke.ahajournals.org/lookup/suppl/doi:10.1161/STROKEAHA.
113.001992/-/DC1.
Correspondence to Dylan Blacquiere, MD, Division of Neurology, Department of Medicine, University of Ottawa, The Ottawa Hospital Civic Campus,
Room 2182, 1053 Carling Ave, Ottawa, Ontario K1Y 4E9, Canada. E-mail dblacquiere@toh.on.ca
2013 American Heart Association, Inc.
Stroke is available at http://stroke.ahajournals.org DOI: 10.1161/STROKEAHA.113.001992

2617
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2618StrokeSeptember 2013

Table. Demographic/Clinical Data for Patients/Respondents from palliation to patient death was 121 hours. Most (93.3%)
(N=15) had intravenous hydration stopped as part of palliative care,
Patient age (median) 86 and nasogastric feeding was avoided or discontinued in all
patients.
Men 8 (53.3%)
Satisfaction was highest with treatment of pain and dys-
Ethnicity
pnea, but was lower with treatment of anxiety and depres-
White 14 (93.3%) sion. Satisfaction with other aspects of care was consistent
Inuit 1 (6.67%) across all domain scores (Figure1). Families were most
Educational level satisfied with provision of information and facilitated deci-
Less than high school 4 (26.7%) sion making, but less satisfied with attention given to family
High school or above 11 (73.3%) needs and coordination of care. Families had less satisfac-
Estimated annual household income
tion with nasogastric feeding, intravenous hydration, and
communication.
<$50 000 2 (13.3%)
Satisfaction with the overall process was high (9.04/10)
>$50 000 10 (66.7%)
(Figure 2). Satisfaction was the highest with communication,
Unknown 3 (20.0%) provision of respectful care, and provision of dignity.
Independent before hospitalization 8 (53.3%)
Power of attorney (healthcare) assigned 12 (80.0%) Discussion
Advanced care planning before stroke 7(46.7%) To our knowledge, this is the first study that has used a vali-
Stroke type dated tool to measure family satisfaction quantitatively after
Ischemic 10 (66.7%) palliative care in acute stroke. We found that family satisfac-
ICH/SAH 5 (33.3%)
tion with palliative care was high, and most domains mea-
sured were similar in satisfaction scores. Most families were
Median NIHSS 20
satisfied with analgesia, but less satisfied with the control of
Median time for care milestones, d
symptoms of anxiety and depression. There was less satisfac-
Admission to discussion of palliation 1.2 tion with care given to needs as a family, privacy, and provi-
Admission to palliation 2.8 sion of information. Satisfaction with issues about parenteral
Stroke onset to death 9.9 nutrition, intravenous fluids, and communication with aphasic
Palliation to death 5.0 patients was low compared with other domains. On overall
IV fluids stopped 14 (93.3%) satisfaction scores, symptom control for patients and provi-
NG feeding stopped/never started 15 (100%)
sion of emotional support to families were identified as areas
for improvement.
Respondent relation to patient
Previous studies show that palliative care helps families
Child 13 (86.67%) feel that patient needs are met.11 In 1 study, excellent care was
Spouse 1 (6.67%) associated with adequate nursing assistance, family involve-
Friend 1 (6.67%) ment with decision making, respecting patient dignity, and
ICH indicates intracerebral hemorrhage; IV, intravenous; NG, nasogastric; NIHSS, being told when death was imminent.7 Other areas of concern
National Institutes of Health Stroke Scale; and SAH, subarachnoid hemorrhage. include providing adequate information to families, and con-
trol of patient symptoms.3,5,7 Our study confirms these find-
less than half (46.7%) had an advanced care directive. Median ings; most were satisfied, but areas for improvement were
time from admission to discussion of palliation was 28.5 identified, including symptom control and care for the family,
hours; admission to palliative care was 68 hours. Median time with these domains being identified as areas for improvement.

Figure 1. Satisfaction with

palliative treatment of indi-
vidual symptoms and specific
domains (scores between 01;
higher scores represent less
satisfaction).

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 Blacquiere et al Satisfaction With Palliative Care After Stroke 2619
The cessation of artificial hydration and feeding are conten-
tious,4 coinciding with our finding in this cohort of lowered
satisfaction with these issues. The discussion of artificial feed-
ing and nutrition with family requires balancing emotional
concerns with evidence and guidelines concerning end-of-life
care after stroke.3
Limitations of our study include the small sample size, the
lack of validity of the stroke-specific questions in the question-
naire, and the uncertainty of the generalizability of the study
instrument to patients with stroke because it was originally
designed for general palliative care research. Nevertheless,
this study suggests areas to improve palliative care after stroke.
Future studies should develop validated tools to measure sat-
isfaction with care specific to stroke in a broader sample of
patients. In the meantime, caregivers can use these findings
to help guide their interactions with families while caring for
patients dying from acute stroke.
Acknowledgments
Dr Theresa Green of the Faculty of Nursing at the University of
Calgary assisted with article editing and review. Data analysis meth-
ods for the AfterDeath Bereaved Family Member Interview were
made available by Dr Joan Teno and Cindy Williams of the Warren
Alpert School of Medicine at Brown University in Providence, Rhode
Island.
Disclosures
None.
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Figure 2. Overall satisfaction
with various aspects of pallia-
tive care (scores between 010;
higher scores represent more
satisfaction).
References
1. Minino AM, Xu J, Kochanek KD. Deaths: preliminary data for 2008.
National Vital Statistic Reports. Hyattsville, MD: National Centre for
Health Statistics; 2010;59.
2. Rogers A, Addington-Hall J. Care of the dying stroke patient in the acute
setting. J Res Nurs. 2005;10:15367.
3. Lindsay MP, Gubitz G, Bayley M, Hill MD, Davies-Schinkel C, Singh S
et al. Canadian Best Practice Recommendations for Stroke Care (Update
2010). On Behalf of the Canadian Stroke Strategy Best Practices and
Standards Writing Group. Ottawa, Canada: Canadian Stroke Network;
2010.
4. Blacquiere DP, Gubitz GJ, Dupere D, McLeod D, Phillips S. Evaluating
an organized palliative care approach in patients with severe stroke. Can
J Neurol Sci. 2009;36:731734.
5. Holloway RG, Ladwig S, Robb J, Kelly A, Nielsen E, Quill TE.
Palliative care consultations in hospitalized stroke patients. J Palliat
Med. 2010;13:407412.
6. 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;26:22422248.
7. Rogers A, Addington-Hall J. Care of the dying stroke patient in the acute
setting. J Res Nursing. 2005;10:15367.
8. 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;65:21612174.
9. Mazzocato C, Michel-Nemitz J, Anwar D, Michel P. The last days of
dying stroke patients referred to a palliative care consult team in an acute
hospital. Eur J Neurol. 2010;17:7377.
10. Teno JM, Clarridge B, Casey V, Edgman-Levitan S, Fowler J. Validation
of toolkit after-death bereaved family member interview. J Pain Symptom
Management. 2001;2:7518.
11. Gelfman LP, Meier DE, Morrison RS. Does palliative care improve qual-
ity? A survey of bereaved family members. J Pain Symptom Manage.
2008;36:2228.
 ONLINE SUPPLEMENT

Supplemental Methods: Non-validated Stroke Specific Questions

These questions were asked in addition to the Death-in-Hospital Format of the After-
Death Bereaved Family Member Interview. The questionnaire, resource guide and
statistical methodology are available online at the following web address:
(http://www.chcr.brown.edu/pcoc/toolkit.htm).

(In that last week/while under care of the hospital), was [PATIENT] receiving tube
feeding, though a tube down their nose or directly inserted into their stomach?

[ ] YES
[ ] NO
[ ] DONT KNOW

(In that last week/while under care of the hospital), did (his/her) doctor or the
medical staff who cared for (him/her) tell you about tube feeding in a way that you
could understand?

[ ] YES
[ ] NO

(In that last week/while under care of the hospital), did [PATIENT] receive too
much, too little, or just the right amount of food to keep them comfortable?

[ ] TOO MUCH
[ ] TOO LITTLE
[ ] RIGHT AMOUNT

(In that last week/while under care of the hospital), was [PATIENT] receiving fluids
through an intravenous line?

[ ] YES
[ ] NO
[ ] DONT KNOW

(In that last week/while under care of the hospital), did (his/her) doctor or the
medical staff who cared for (him/her) tell you about intravenous fluids in a way that
you could understand?

[ ] YES
[ ] NO

(In that last week/while under care of the hospital), did [PATIENT] receive too
much, too little, or just the right amount of fluids to keep them comfortable?

Supplemental Questions Page 1

[ ] TOO MUCH
[ ] TOO LITTLE
[ ] RIGHT AMOUNT

(In that last week/while under care of the hospital), was [PATIENT] able to
communicate verbally with other people?

[ ] YES
[ ] NO
[ ] DONT KNOW

(In that last week/while under care of the hospital), did (his/her) doctor or the
medical staff who cared for (him/her) tell you about communication in a way that
you could understand?

[ ] YES
[ ] NO

(In that last week/while under care of the hospital), how often did [PATIENT]s
doctors make the effort to communicate with (him/her) verbally always, usually,
sometimes or never?

[ ] ALWAYS
[ ] USUALLY
[ ] SOMETIMES
[ ] NEVER

Supplemental Questions Page 2

 Satisfaction With Palliative Care After Stroke: A Prospective Cohort Study
Dylan Blacquiere, Khadija Bhimji, Hilary Meggison, John Sinclair and Michael Sharma

Stroke. 2013;44:2617-2619; originally published online July 2, 2013;

doi: 10.1161/STROKEAHA.113.001992
Stroke is published by the American Heart Association, 7272 Greenville Avenue, Dallas, TX 75231
Copyright 2013 American Heart Association, Inc. All rights reserved.
Print ISSN: 0039-2499. Online ISSN: 1524-4628

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http://stroke.ahajournals.org/content/44/9/2617

Data Supplement (unedited) at:

http://stroke.ahajournals.org/content/suppl/2013/07/02/STROKEAHA.113.001992.DC1.html

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