Improving End of Life Cancer Outcomes Through Development and Implementation of a Spiritual Care Advocate Program

Abstract

Background
Explored whether increased support for spiritual concerns between the healthcare team and patients through the provision of a Spiritual Care Advocate (SCA) would improve end of life outcomes in a metastatic cancer population.

Design
Newly diagnosed metastatic cancer patients were recruited at the University of Chicago Medical Center and received spiritual support from a Spiritual Care Advocate during chemotherapy treatments. The final sample consisted of 42 patients (58% of those approached) who completed the baseline survey and had known survival status.

Measurement
Patients completed pre/post surveys measuring spiritual support and palliative quality of life. Baseline measurements of religious practice and externalizing religious health beliefs were also obtained. Receipt of aggressive EOL care was derived from the electronic medical record.

Result
Median age was 61 years, with 48% Black, and predominantly male (62%). Of the 42 patients, 30 (70%) had died by the time of this analysis. Perceived spiritual support from the medical team increased in 47% of those who received non-aggressive EOL care and by 40% in those who received aggressive EOL care (p=0.012). Patient perceptions of spiritual support from the medical community increased from 27% at baseline to 63% (p=0.005) after the SCA intervention. Only 20% of recipients received aggressive treatments at end of life.

Conclusion
The SCA model improved the perceived spiritual support between the healthcare team and patients. Although limited by a small sample size, the model was also associated with an improvement in EOL patients’ quality of life, spiritual wellbeing, and decreased aggressive EOL care.

Full text

Medical Manuscript
Improving End of Life Cancer Outcomes
Through Development and Implementation of
a Spiritual Care Advocate Program
Toni Cipriano-Steffens, MA
1
, John F. Cursio, PhD
2
, Fay Hlubocky, PhD
1
,
Marsha Sumner, MDiv, APBCC
1
, Deborah Garnigan-Peters, BA
1
, Judy Powell, BA
1
,
Nicole Arndt
1
, Lee Phillips, MA, MSW
1
, Rev. Herbert Lassiter
3,4
,
Marie Gilliam, BA, MHSA
4
, Lou Ester Petty, BS
4
, Rev. Scott Onque Pastor
4,5
,
Monica Malec, MD
1
, George Fitchett, DMin, PhD
6
, and Blase Polite, MD, MPP
1
Abstract
Background: Explored whether increased support for spiritual concerns between the healthcare team and patients through the
provision of a Spiritual Care Advocate (SCA) would improve end of life outcomes in a metastatic cancer population. Design:
Newly diagnosed metastatic cancer patients were recruited at the University of Chicago Medical Center and received spiritual
support from a Spiritual Care Advocate during chemotherapy treatments. The final sample consisted of 42 patients (58% of those
approached) who completed the baseline survey and had known survival status. Measurement: Patients completed pre/post
surveys measuring spiritual support and palliative quality of life. Baseline measurements of religious practice and externalizing
religious health beliefs were also obtained. Receipt of aggressive EOL care was derived from the electronic medical record.
Result: Median age was 61 years, with 48% Black, and predominantly male (62%). Of the 42 patients, 30 (70%) had died by the
time of this analysis. Perceived spiritual support from the medical team increased in 47% of those who received non-aggressive
EOL care and by 40% in those who received aggressive EOL care (p¼0.012). Patient perceptions of spiritual support from the
medical community increased from 27% at baseline to 63% (p¼0.005) after the SCA intervention. Only 20% of recipients received
aggressive treatments at end of life. Conclusion: The SCA model improved the perceived spiritual support between the
healthcare team and patients. Although limited by a small sample size, the model was also associated with an improvement in
EOL patients’ quality of life, spiritual wellbeing, and decreased aggressive EOL care.
Keywords
healthcare disparities, health equity, end of life, aggressive outcomes, palliative care, religion, spirituality, Blacks, African Americans
Introduction
The majority of cancer patients with end-stage disease express
a preference to die at home, yet many are likely to die in a
hospital and receive active, cancer-directed, or “aggressive
care”, at the end of life (EOL). Specifically, research shows
that Black patients tend to receive more life prolonging, aggres-
sive care and less comfort-focused care at EOL than White
patients. These patients have documented increased rates of
feeding tubes, ICU hospitalizations, and resuscitation at the
EOL and lower rates of hospice enrollment compared to their
White counterparts.
1-6
Extensive work confirms increasing
Black-White disparities at EOL in the receipt of intensive,
life-prolonging care in the final week of life, and in cancer
patients’ acceptance of terminal illness, treatment preferences,
and lack of advance care planning (ACP).
7-10
This “aggressive” cancer-focused EOL care, sometimes cor-
related with the presence of strong religious beliefs and deep
connections to religious communities,
11
does appear attenuated
when health care teams engage with patients in their spiritual
and religious beliefs.
12
There is also a growing body of evi-
dence documenting the importance of religion and spirituality
(R/S) for patients with advanced cancer and other illness
13-15
1
Department of Medicine, University of Chicago, Chicago, IL, USA
2
Department of Public Health Sciences, University of Chicago, Chicago,
IL, USA
3
Christ Universal Temple, Chicago, IL, USA
4
ACTS of FAITH, Chicago, IL, USA
5
Saint Luke Missionary Baptist Church, Chicago, IL, USA
6
Department of Religion, Rush University Medical Center, Chicago, IL, USA
Corresponding Author:
Toni M. Cipriano-Steffens, MA, The University of Chicago Medical Center
Department of Medicine Section of Hematology/Oncology 5841S. Maryland
Avenue, MC 2115, Chicago, IL 60637, USA.
Email: tciprian@medicine.bsd.uchicago.edu
American Journal of Hospice
& Palliative Medicine
®
1-10
ªThe Author(s) 2021
Article reuse guidelines:
sagepub.com/journals-permissions
DOI: 10.1177/1049909121995413
journals.sagepub.com/home/ajh

including for those receiving palliative care.
16
For many of
these patients, R/S plays an important role in coping with ill-
ness,
17
quality of life
18-20
and in decision-making about treat-
ment.
11,21,22
Key to this work is substantial evidence of higher
levels of religious involvement for Blacks and other minori-
ties
23,24
compared to White patients, with a higher proportion
of Black and Hispanic patients reporting that R/S plays an
important role in helping them cope with illness.
17,23,24
While physicians and other healthcare professionals recognize
the importance of R/S for their patients they often do not inquire
about patients’ R/S in part due to lack of training and concern
about the time required to do so.
25,26
Chaplains are universally
looked to as the spiritual care specialists on healthcare teams
27
with evidence showing the benefits of spiritual care for patients
with advanced illness. There is also evidence of spiritual care as
part of multi-dimensional interventions,
28-30
the benefits of spiri-
tual care for quality of life for patients with advanced cancer,
31
and that spiritual care from the healthcare team versus one’s
congregation was associated with less aggressive care at
EOL.
12
The problem lies in the reality of most hospitals not
having a spiritual care department
32
or sufficient staffing to
provide chaplain care for all patients with advanced ill-
ness,
33
especially in the outpatient context. Too, only 1 in
3 palliative care teams report staff chaplains on the team.
34
Considering the important role spirituality plays in cancer
patients’ lives,
35
the Spiritual Care Advocate (SCA) program was
developed to increase the attention to spiritual concerns of
patients with advanced cancer, especially Black patients. Specif-
ically we piloted the SCA to 1) provide a viable description of the
SCA as a future model of supportive cancer care; 2) determine the
viability and acceptance of the SCA program; and 3) provide a
preliminary test of its potential to improve EOL outcomes.
We hypothesized that by improving perceived spiritual sup-
port between the healthcare team and patients with strong base-
line R/S beliefs, you will improve both psychosocial outcomes
(quality of life, spiritual wellbeing), and EOL outcomes (non-
receipt of inappropriately aggressive end of life care, advanced
directives, palliative care, hospice referral).
Figure 1. CONSORT flow diagram.
2American Journal of Hospice & Palliative Medicine
®

Methods
Study Population
Our research team approached newly diagnosed metastatic
(stage IV) cancer patients with life expectancies of less than
12 months, during their chemotherapy treatment to describe the
SCA study with the aid of an informative brochure created for
the model as a visual aid (App. 1). Those who consented then
completed a self-administered baseline questionnaire (App. 2),
were informed that there would be one additional interview in
the future including an evaluation (App. 3), and told an SCA
would visit them at their next chemotherapy appointment.
There were 213 patients who were identified as eligible in
the EMR, of these 213, 72 were approached (34%) and of these
72, 52 (72%) consented for the study. The final sample con-
sisted of 42 patients (58%of those approached) who completed
baseline surveys and had known survival status. Details are
shown in the Consort Flow Diagram (Figure 1). The Institu-
tional Review Board (IRB) of the University of Chicago Med-
icine approved this study, its protocol and instruments used.
SCA Intervention: The Spiritual Care Advocate (SCA)
Model
A collaboration across a team of community partners was cre-
ated to accomplish 2 objectives: 1) Develop and test a model of
cancer care spiritual support for acceptance and viability in a
medical setting; and 2) Use the developed model as a liaison
between medical and religious communities. Partners in the
development of the SCA model included: A.C.T.S. of
F.A.I.T.H. (AoF, Actions Connected To Spirituality Forming
Alliances In Transforming Health), Chicago Southside pastors,
physicians, researchers and chaplains. Through this group, we
defined then refined the SCA model.
The SCA position was posted in local churches and 2 SCAs
were hired by AoF, each having exemplary service to their
congregations’ church members and pastors, including one
who was serving as a deaconess, and the other, a nurse and
community activist, who helped members of her congregation
by providing medical education on cancer and its treatments.
Each SCA received training and support in the basics of cancer
care, end-of-life and palliative care, and chaplaincy and distress
communication. They were trained to provide the patient with
whatever level of spiritual support the patients were comforta-
ble. Based on prior work, we expected this to include prayer,
readings from Scripture, and discussions surrounding the spiri-
tual challenge of living with a terminal cancer diagnosis. They
were also trained and mentored by the Head Chaplain and
Manager of the Spiritual Care Department at University of
Chicago Medicine (MS), to recognize those patients with more
significant spiritual struggle for whom chaplain support was
recommended. Along with training, procedures were in place
for on-going support in the form of assessments and debrief-
ings, which took place bi-weekly and then, on an as-needed
basis, also led by the Head Chaplain. The SCA’s met with
about twenty patients a week (most patients receive treatment
bi-weekly), or ten patients per SCA, and spent about 20-30
minutes per patient visit.
Measures
Two surveys were conducted, baseline and then a second sur-
vey at 3-4 months primarily during IV therapy visits by the
research team. End of life outcomes were collected via chart
extraction from the EMR including the EPIC Care Everywhere
function that allowed us to collect data from non-affiliated
hospitals. There were 42 participants at baseline of which
24 (57%) completed the follow-up survey.
Baseline
Demographic, Psychosocial and Clinical Variables. Demographic
and socioeconomic variables were obtained from patient self-
report as shown in Table 1.
Baseline Survey (Appendix 2). We used well-validated and highly
reliable measures with good to excellent psychometric proper-
ties. Many of these measures have been used previously in
cancer focused EOL research and in our own cancer disparity
focused research involving nearly 1000 cancer patients.
Religion Survey—7-item self-report survey to collect back-
ground information about various aspects of a person’s reli-
gious life.
God Locus of Health Control (GLHC) Survey
36
—6-item
Likert scale used to assesses the belief that God is the locus of
control in one’s disease.
36
A total scale score was calculated by
adding the scores for each item (i.e., 1 ¼“strongly disagree” and
5¼“strongly agree”). Higher scores indicated a higher degree of
GLHC. Cronbach’s alpha for the GLHC was 0.943 for this study
sample.
Second Survey (included in baseline and second Survey, see Appendix
3). Spiritual Support Survey—Developed through consensus-
building work with our community partners, and based on
items from the Coping with Cancer Study
12
—3-questions
assessing 3 constructs of spiritual support: 1) Spiritual sup-
port from religious communities: To what extent are you
receiving the religious/spiritual support you need from your
religious community (e.g., clergy, members of your congre-
gation)?; 2) Spiritual support from the medical team: To
what extent are your religious/spiritual needs being sup-
ported by your medical team?; and 3) Spiritual support from
family: To what extent are you receiving the religious/spiri-
tual support you need from your family? Response options
included “not at all,” “to a small extent,” “to a moderate
extent,” “to a large extent,” or “completely supported” and
each item was dichotomized into low (“not at all,” “to a
small extent,” or “to a moderate extent”) and high (“to a
large extent” or “completely supported”) spiritual support.
Palliative Care Cancer-Related to Quality of Life Survey
(FACIT-Pal
37
and FACIT-Spiritual 12
38
)—28-item total,
Cipriano-Steffens et al 3

Table 1. Sample Description – Total Population, N ¼42.
Demographic Variables
Non-aggressive
EOL care
(N ¼24/30**, 80%)
Aggressive
EOL care
(Y ¼6/30**, 20%)
Total sample
(n ¼42)
p-value (difference
between aggressive
vs non-aggressive)
Age, mean (SD) 59.8 (11.3) 62.0 (12.8) 60.8 (11.2) 0.80*
Gender female 12 (50%) 0 (0%) 16 (38%) 0.06
male 12 (50%) 6 (100%) 26 (62%)
Race nH White 11 (46%) 3 (50%) 19 (45%) 1.00
nH Black 12 (50%) 3 (50%) 20 (48%)
nH Asian 0 (0%) 0 (0%) 1 (2%)
Missing 1 (4%) 0 (0.0%) 2 (5%)
Married yes 14 (58%) 4 (67%) 24 (57%) 1.00
no 10 (42%) 2 (33%) 18 (43%)
Education less than HS 4 (16%) 1 (17%) 5 (12%) 0.80
HS 4 (16%) 2 (33%) 8 (19%)
greater than HS 16 (68%) 3 (50%) 29 (69%)
Income less than 20K 5 (21%) 2 (33%) 11 (26%) 0.91
20-60K 7 (29%) 2 (33%) 11 (26%)
greater than 60K 10 (42%) 2 (33%) 17 (41%)
Missing 2 (8%) 0 (0.0%) 3 (7%)
Private Insurance yes 10 (42%) 2 (33%) 16 (38%) 1.00
no 14 (58%) 4 (67%) 26 (62%)
Hospice (n ¼30) yes 19 (79%) 1 (17%) 20 (67%) 0.01
no 5 (21%) 5 (83%) 10 (33%)
Palliative Care (n ¼30) yes 19 (79%) 4 (67%) 23 (77%) 0.60
no 5 (21%) 2 (33%) 7 (23%)
Religious Variables
Non-aggressive
EOL care
(N ¼24/30**, 80%)
Aggressive
EOL care
(Y ¼6/30**, 20%)
Total sample
(n ¼42)
p-value (difference
between aggressive
vs non-aggressive)
Interest in receiving spiritual
support services and/or
resources through you
cancer health care team
and/or your doctor?
Very 8 (33%) 3 (50%) 15 (37%) 0.60
Somewhat 10 (42%) 3 (50%) 16 (39%)
Mildly 6 (25%) 0 (0%) 9 (22%)
Not
interested
NA NA 1 (2%)
How often do you attend
religious services?
Never 3 (13%) 1 (17%) 7 (17%) 0.20
1-3 times a year 6 (25%) 2 (33%) 10 (24%)
Several times a
year
8 (33%) 1 (17%) 9 (22%)
1-3 times a
month
1 (4%) 2 (33%) 6 (15%)
1-3 times a week 6 (25%) 0 (0%) 9 (22%)
Help from Clergy No 15 (62%) 4 (67%) 28 (67%) 1.00
Yes 9 (38%) 2 (33%) 14(33%)
(continued)
4American Journal of Hospice & Palliative Medicine
®

including 16 items for the FACIT-Pal and 12 items for the
FACIT-SP focusing on issues relevant to palliative care
patients, and spiritual items focusing on spiritual well-being
for chronically ill patients. For all FACIT scales and symp-
tom indices, the higher the score the better the QOL.
Patient Evaluation of SCA Services—5-item team-created
survey completed at the second interview to gather information
for model improvement.
EOL Variables. From the EMR, we extracted: 1) whether or
not they received aggressive End of Life Care (primary
outcome); 2) whether or not they were enrolled in Palliative
Care; and 3) whether or not they died in Hospice. Aggres-
sive EOL care was defined as any of the following: death in
hospital not in hospice, receipt of chemotherapy within
14 days of death, ventilator use, and CPR.
39
Survival status
was determined by EMR chart review and search of
obituaries.
To obtain information on palliative care and hospice, we
utilized EMR information. For missing data, we queried the
SCAs and their notes to determine whether the patient was
enrolled in hospice.
Table 1. (continued)
Religious Variables
Non-aggressive
EOL care
(N ¼24/30**, 80%)
Aggressive
EOL care
(Y ¼6/30**, 20%)
Total sample
(n ¼42)
p-value (difference
between aggressive
vs non-aggressive)
Importance of RS Beliefs Not Important 0 (0%) 1 (17%) 1 (2%) 0.12
Slightly
Important
1 (4%) 1 (17%) 3 (7%)
Somewhat
Important
2 (8%) 1 (17%) 6 (14%)
Moderately
Important
5 (20%) 1 (17%) 7 (17%)
Very Important 16 (67%) 2 (33%) 25 (60%)
God Health Locus of Control Mean (SD) 17.4 (8.7) 16.0 (13.0) 17.3 (9.5) 0.76
Most things that affect my cancer
happen because of God.
Moderate to a
Great Deal
8 (33%) 3 (50%) 14 (33%) 0.64
If my cancer worsens, it is up to
God to determine whether
I feel better again.
Moderate to a
Great Deal
13 (54%) 3 (50%) 23 (55%) 1.00
God is directly responsible for my
cancer getting better or worse.
Moderate to a
Great Deal
13 (54%) 4 (67%) 24 (57%) 0.67
Whatever happens to my cancer is
God’s will.
Moderate to a
Great Deal
15 (62%) 3 (50%) 25 (60%) 0.66
Whether or not my cancer improves
is up to God.
Moderate to a
Great Deal
14 (58%) 3 (50%) 24 (57%) 1.00
God is in control of my cancer. Moderate to a
Great Deal
13 (54%) 3 (50%) 22 (52%) 1.00
Spiritual Support Variables
SS2 – Religious Community Mean (SD) 2.8 (1.5) 3.5 (1.6) 2.8 (1.5) 0.32
SS3 – Medical Team Mean (SD) 1.9 (1.3) 2.5 (1.8) 2.0 (1.3) 0.36
SS4 - Family Mean (SD) 3.9 (1.2) 3.8 (1.6) 3.8 (1.4) 0.83
QoL Variables
Non-aggressive
EOL care
(N ¼24/30**, 80%)
Aggressive
EOL care
(Y ¼6/30**, 20%)
Total sample
(n ¼42)
p-value (difference
between aggressive
vs non-aggressive
FACIT PAL Mean (SD) 51.8 (7.0) 51.8 (9.8) 53.0 (7.0) 1.00
FACIT SPIRITUAL Mean (SD) 43.8 (9.4) 47.0 (8.4) 44.0 (8.5) 0.44
*Wilcoxon test.
**Total deceased at time of analysis.
All others Fisher’s exact test.
Cipriano-Steffens et al 5

Analysis
A summary of subject characteristics for the total population
analyzed is shown in Table 1 across 3 columns. The first
column are those individuals who received non-aggressive
EOL care (n ¼24), the second were those receiving aggres-
sive EOL care (n ¼6), and the total sample (n ¼42). Subjects
still alive at time of survey (n ¼12) were included in the total
sample column. For categorical variables, counts and percen-
tages are presented, and means and standard deviations are
presented for continuous variables. Comparisons of frequen-
cies between non-aggressive and aggressive EOL were
made using Chi-square test or Fisher’s exact test where
appropriate. Means of continuous variables between the
2 groups were compared using student t-tests and Wilcoxon
test for skewed data.
Table 2 compares changes in pre and post results for the
spiritual synergy survey, with Chi-square tests comparing the
percent that responded as moderately or higher on those items.
In addition, the table shows means and standard deviations for
FACIT PAL and FACIT SPIRITUAL, with t-test comparing
pre and post changes.
Table 3 shows changes in spiritual synergy items classified
into 3 categories: increased, decreased, and no change with
frequencies and percentages split by aggressive EOL care,
non-aggressive EOL care, and sample totals. Fisher’s exact test
was used to compare distributions of the change categories due
to low sample sizes.
Results
Participant Characteristics
Forty-two participants completed the baseline survey and had
at least one encounter with a SCA. Out of this sample, 30
(70%) had died at the time of this analysis. Of the 30, 20%
(N ¼6) received aggressive EOL Care, and 80%(N ¼24) had
no aggressive EOL care. The overall sample (N ¼42) was
nearly equally divided by race (48%Black and 45%White),
predominantly male (62%) and had greater than a high school
education (69%). One-quarter (26%) had incomes of less than
$20,000. Palliative care was received by 79%of non-
aggressive EOL patients vs. 67%aggressive EOL patients
(p ¼0.60). For the entire population, 76%were interested
in receiving spiritual support from their doctor or health care
team with no difference between those who did or did not
receive aggressive EOL care (p ¼0.6). A majority of our
participants (67%) said they received no help from clergy
during their illness. There was no significant difference
between the groups in terms of baseline religious practices
or externalizing religious beliefs or in terms of baseline qual-
ity of life scores.
Table 2. Religious/Spiritual Support, R/S and Quality of Life for Pre/
Post Changes in an EOL Population (N ¼42).
Values
PRE
baseline
survey
N¼42
POST
second
survey
N¼24* p-value
Spiritual Support Survey
To what extent are you
receiving the religious/
spiritual support you
need from your
religious community
(e.g., clergy, members
of your congregation)?
(Moderately, plus)
N (%) 23 (55%) 17 (70%) 0.20
To what extent are your
religious/spiritual
needs being
supported by your
medical team?
(Moderately, plus)
N (%) 11 (27%) 15 (63%) 0.005
To what extent are you
receiving the religious/
spiritual support you
need from your family?
(Moderately, plus)
N (%) 33 (79%) 22 (92%) 0.30
FACIT PAL Mean(sd) 53.2 (6.6) 54.8 (6.4) 0.32
FACIT SPIRITUAL Mean(sd) 44.1 (8.0) 46.6 (7.0) 0.17
*Those who answered the post survey.
Table 3. Pre/Post Change in Spiritual Support with Healthcare Team
and Association with Aggressive EOL Care*.
Non aggressive
N¼19
Aggressive
N¼5
Total
N¼24 p-value
Change in Spiritual Support from Religious Community (SS2)
Increased 9 (47%) 0 (0%) 9 (38%) 0.08
Decreased 5 (26%) 1 (20%) 6 (24%)
No
Change
5 (26%) 4 (80%) 9 (38%)
Change in Spiritual Support from Medical Team (SS3)
Increased 9 (47%) 2 (40%) 11 (46%) 0.012
Decreased 1 (5%) 3 (60%) 4 (17%)
No
Change
9 (47%) 0 (00%) 9 (38%)
Change in Spiritual Support from Family (SS4)
Increased 6 (31%) 1 (20%) 7 (29%) 1.00
Decreased 2 (11%) 1 (20%) 3 (13%)
No
Change
11 (58%) 3 (60%) 14 (58%)
FACIT Pal
Increased 12 (63%) 2 (40%) 14 (58%) 0.43
Decreased 5 (26%) 3 (60%) 8 (33%)
No
Change
2 (11%) 0 (0%) 2 (8%)
FACIT Spiritual
Increased 12 (63%) 2 (40%) 14 (58%) 0.43
Decreased 6 (32%) 2 (40%) 8 (33%)
No
Change
1 (5%) 1 (20%) 2 (8%)
*All p-values in table 3 by Fisher’s exact test.
6American Journal of Hospice & Palliative Medicine
®

Spiritual Support, R/S and Quality of Life for Pre/Post
Changes in an EOL Population (N ¼42)
In accordance with the study hypothesis, Table 2 shows that
participants reported increased spiritual support from the med-
ical community from 27%at baseline to 63%(p ¼0.005) post
the SCA intervention. There were also moderate increases
across the patient and religious community (55%to 70%;
p¼0.20), and support from the family (79%to 92%;
p¼0.30); moderate, but non-statistically significant increases
across quality of life measures for the FACIT-Pal (palliative
care measure) (Mean 53.2 vs. 54.8; p ¼0.32); and benefits,
comfort and coping derived from spirituality in the FACIT-SP
(Mean 44.1 vs. 46.6; p ¼0.17).
Association of Change in Spiritual Synergy with Aggressive
EOL Care
Table 3 demonstrates how changes in perceived support
were associated with EOL care for those who had died and
had completed both baseline and second survey. Change in
perceived spiritual support from the health care team
increased from pre to post in 47%of those who received
non-aggressive EOL care and by 40%in those who received
aggressive EOL care (p ¼0.012). These findings are con-
sistent with the study’s primary hypothesis. Spiritual support
from the religious community also increased in 47%of
those who received non-aggressive EOL care but in none
of the individuals who received aggressive EOL care
(p ¼0.08) The change in perceived spiritual support from
the family found no difference in those who received
aggressive and non-aggressive EOL care (p ¼1.00).
Patient Evaluation of SCA Support
Table 4 displays responses from the Patient Evaluation of SCA
services. From the survey, 67%agreed with the statement
“quite a bit” to describe the extent to which the SCA provided
them support in dealing with their cancer and cancer treatment,
with an overall positive experience with this type of support as
“a lot better than expected” at 59%.
Table 4. Sample Patient Evaluation of SCA Support Responses.
What services did you receive?
Do you have any suggestions for
improvement?
Are there additional services that
could be offered?
She (DP) was a very lovely lady. Helped with
many spiritual needs. Somebody to laugh and
talk with while I was there.
Not that I can think of. Nothing with the SCA program. Would be
nice if there was more financial
assistance was given though.
Spiritual guidance, help with slow process, able
to talk to someone
No. No.
Discussions with my advocate regarding family,
treatment, my feelings regarding my condition.
Spiritual and prayer services. Judy was very
helpful and excellent.
My wife loves her and has become good friends
with DP. We receive constant support from
her.
She couldn’t do anything better. I can’t think of anything. She is doing a
good job and it’s a good program.
JP has seen me most times I’ve come for chemo.
We talk and then pray together. She also
called me when my treatment was delayed
because she hadn’t seen me and that meant a
lot to me.
One suggestion, I have strong spiritual support
already, but one can never get enough. I like
the visits during my chemo. I come with
friends for all of my appointments so I have a
lot of support, but there may be patients who
could use additional support, e.g. I get a white
cell booster shot a few days after chemo, if I
did not come with a friend it would be nice to
have someone check in with me on that day
too.
See previous answer.
JP provided a listening ear. I was able to talk with
her about how I felt about me, my family, faith
and religion. She was very uplifting, showed
concern, encouraged me and had a beautiful
spirit. She was the kind of person you just
wanted to be around. And when it was time
for her to go visit another patient I just wanted
her to stay a little longer, and she would. And
she was a very spiritual person.
No everyone associated with the program did a
great job.
No I don’t think so. Last time I was there
the doctor offered a counselor, but I
don’t need one because my faith is
strong.
Direction and sense of purpose. No. Financial planning.
Cipriano-Steffens et al 7

Discussion
Research suggests that if the health care team were to take a
more active role in addressing the religious and spiritual values
which inform patient decision-making regarding transitions to
end of life care, fewer patients would choose aggressive end of
life care options.
12,25,40
Our findings support the study’s
hypothesis that the SCA intervention would increase perceived
spiritual support between the healthcare team and patients and
this would lead to modest improvements in both psychosocial
(quality of life, spiritual wellbeing), and EOL outcomes
(defined as non-receipt of inappropriately aggressive end of
life care).
For people facing a serious illness, such as a diagnosis of
cancer, R/S beliefs are a source of guidance and coping,
41,17
providing meaning and purpose, particularly during times of
suffering.
7,8,42-48
Despite years of studies demonstrating the
importance of R/S in illness,
13,14,20,49
there remains a deep
chasm between the type of support patients need during can-
cer and what they are actually getting from medical and reli-
gious communities.
31
This study, along with others,
12
exposes
an unmet clinical need in patients, with strong R/S beliefs.
The Spiritual Care Advocate model, informed both by our
work and others in R/S and health, addresses a care gap, by
providing spiritual support to a highly religious cancer
population.
Building a New Model of Cancer Care Support: Spiritual
Care Advocate (SCA)
From a previous study exploring Black-White differences in
R/S beliefs and late-stage cancers,
50
we found Black patients
wanted to receive spiritual support from the health care team.
Building on this finding, we then asked what spiritual support
from the doctor or health care team would look like.
51
They
suggested praying, a Bible reading, a chat about how they’re
doing, inquiring as to whether or not their spiritual needs are
being met, or something as simple as a doctor’s acknowledge-
ment of their spirituality and an offer to help them find a
resource for spiritual needs.
From these findings
50,51
we took our ideas about providing
an end of life patient population spiritual support to a south-
side Chicago community where we engaged with local pastors
and church members, AoF (a partnership among neighboring
churches and UChicago Medicine whose mission is to partner
around identified health concerns to deliver and facilitate pro-
gramming that provides measurable health outcomes), cha-
plains, researchers and doctors to develop the SCA model.
This team developed the SCA model of cancer care support
as someone who would: 1) Listen to patients, 2) Provide com-
fort, and 3) Serve as liaison to patient’s own faith community.
Chaplains contributed to the development of the SCA model,
which was not intended to replace chaplaincy services but to
extend spiritual care to patients where chaplaincy services were
not normally provided. The Spiritual Care Associates could
make referrals for additional spiritual care to chaplains as
indicated.
Study Limitations
This model was developed to address the spiritual concerns of
the predominantly Black Christian patients served by the hos-
pital. Its relevance and acceptability to those of other faith
traditions remains unexplored. We acknowledge that this
model does not apply to those who did not express a desire
for spiritual care support. We also cannot say how the SCA
intervention model would have impacted those who chose not
to participate in the study. However, in our previous work in
this population, such a need is endorsed by the vast majority
of our Black patients and by a near majority of our White
patients. Finally, we acknowledge the small sample size and
the caution needed in making any definitive conclusions from
these data.
Conclusion and Future Implications
The SCA model has the potential to significantly inform cur-
rent research as well as clinical practice paradigms pertaining
to the provision of spiritual care to advanced cancer patients
with a particular relevance to racial and ethnic minorities who
are disproportionately more likely to receive aggressive EOL
care. It places a central focus on spiritual support between the
medical team and faith community in patients with a terminal
diagnosis. We believe this support is critical to achieving less
aggressive end of life care for all patients but especially Black
patients. The current chaplaincy model imbedded in palliative
care, simply does not have the resources to provide this type of
support for all patients but rather has to be reserved for those
with more significant spiritual struggle.
52,53
By being drawn
from among lay members of the community and working
closely with the local faith community leaders, the SCAs are
in an ideal position to ensure continuity of support with
patient’s faith community.
This study demonstrated that the SCA model significantly
improved the perceived spiritual support between the health-
care team and patients with strong baseline R/S beliefs. While
limited by the small sample size, the SCA model was associ-
ated with an improvement in EOL patients’ quality of life and
spiritual wellbeing, and significantly improved EOL outcomes,
including non-receipt of inappropriately aggressive end of life
care, a goal we should strive for as providers for our sickest
patients.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to
the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship,
and/or publication of this article.
8American Journal of Hospice & Palliative Medicine
®

ORCID iD
Toni Cipriano-Steffens https://orcid.org/0000-0001-5481-8754
Supplemental Material
Supplemental material for this article is available online.
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10 American Journal of Hospice & Palliative Medicine
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