Treatment Preferences and Advance Care Planning at End of Life:
The Role of Ethnicity and Spiritual Coping in Cancer Patients
Gala True, Ph.D., Etienne J. Phipps, Ph.D., Leonard E. Braitman, Ph.D., Tina Harralson, Ph.D., Diana Harris, M.A.,
and William Tester, M.D., F.A.C.P.
Albert Einstein Healthcare Network
Philadelphia, Pennsylvania
ABSTRACT
Background: Although studies have reported ethnic differ-
ences in approaches to end of life, the role of spiritual beliefs is
less well understood. Purpose: This study investigated differ-
ences between African American and White patients with can-
cer in their use of spirituality to cope with their cancer and ex-
amined the role of spiritual coping in preferences at end-of-life.
Methods: The authors analyzed data from interviews with 68
African American and White patients with an advanced stage of
lung or colon cancer between December 1999 and June 2001.
Results: Similar high percentages of African American and
White patients reported being “moderately to very spiritual”
and “moderately to very religious.” African American patients
were more likely to report using spirituality to cope with their
cancer as compared to their White counterparts (p = .002). Pa-
tients who reported belief in divine intervention were less likely
to have a living will (p = .007). Belief in divine intervention,
turning to higher power for strength, support and guidance, and
using spirituality to cope with cancer were associated with pref-
erence for cardiopulmonary resuscitation, mechanical ventila-
tion, and hospitalization in a near-death scenario. Conclu-
sions: It was found that patients with cancer who used spiritual
coping to a greater extent were less likely to have a living will
and more likely to desire life-sustaining measures. If efforts
aimed at improving end-of-life care are to be successful, they
must take into account the complex interplay of ethnicity and
spirituality as they shape patients’views and preferences around
end of life.
(Ann Behav Med 2005, 30(2):174–179)
INTRODUCTION
The SUPPORT study, or Study to Understand Prognoses
and Preferences for Outcomes and Risks of Treatments, which
Preparation of this article was supported by grant R21 NR05112-02
(Phipps) from the National Institute of Nursing Research. Portions of
this article were presented as a poster at the conference, “Integrating
Research on Spirituality and Health and Well-Being Into Service De-
livery,” sponsored by the International Center for the Integration of
Health and Spirituality, Bethesda, Maryland, on April 3, 2003.
Reprint Address: G. True, Ph.D., Albert Einstein Healthcare Network,
Center for Urban Health Policy and Research, 1 Penn Boulevard, Phila-
delphia, PA 19144. E-mail: trueg@einstein.edu
© 2005 by The Society of Behavioral Medicine.
174
documented deficiencies in end-of-life care, was instrumental in
propelling research and clinical efforts to improve care of the
dying (1). There have been many changes in legal and clinical
practice around end of life over the past 20 years, including the
passage of the Patient Self Determination Act in 1991 and ef-
forts to increase the use of living wills (LWs) by patients with
terminal illness. These efforts assume an approach to end-of-life
decision making that emphasizes individual control over the
manner and timing of death and a desire to limit the use of
life-sustaining treatments (2–4). More recently, social scientists
have challenged this approach, pointing out that patients’ cul-
tural and spiritual beliefs may yield different views about who
should make decisions for the individual at end of life and what
constitutes optimal care at end of life (5–7).
A number of studies, including our own, have reported that
African American patients and families are more likely than
Whites to want life-sustaining measures, no matter what the pa-
tient’s condition, and are less likely to have an advance care plan
document such as an LW (6,8–12). Proposed reasons for these
differences include mistrust of the health care system (13–15),
lack of familiarity with advance care plan documents (16), eco-
nomic disparities (17), and cultural beliefs and values regarding
the “right time to die” (18). The potential influence of religious
and spiritual beliefs on approaches to end-of-life care and pref-
erences about the use of life-sustaining measures is not well
understood.
A growing literature has explored the impact of specific do-
mains of religiousness and spirituality on health, looking at both
the protective benefits and deleterious effects of spiritual beliefs
and coping (19–24). Religious and spiritual beliefs have been
shown to be integral to coping with serious illness for many pa-
tients (19,21,25,26). Some researchers have indicated that reli-
gion and spirituality play a more important role in coping for
African American patients than for White patients (27–29).
The purpose of this research was to examine differences in
the use of spiritual coping between African American and White
patients with advanced cancer. Specifically, we are interested in
whether such differences are related to preferences and actions
near end of life. The prespecified hypotheses were (a) African
American patients with cancer will use spiritual coping to a
greater extent compared to White patients, and (b) the extent to
which patients with cancer use spiritual coping will be associ-
ated with differences in attitudes, behaviors, and preferences at
end of life, that is, completion of an advance care plan document
and preferences regarding the use of life-sustaining measures,
including desire to be hospitalized.
Volume 30, Number 2, 2005 Spiritual Coping at End of Life 175

METHODS and artificial nutrition, specifically the use of an enteral feeding

Interviews were conducted with 68 African American and
White patients diagnosed with Stage 3–B or 4 lung cancer or
Stage 4 colon cancer. Patients were identified in one of four
ways: (a) from the Albert Einstein Cancer Center office sched-
ule, (b) from the Tumor Registry, (c) from the Cancer Center
Hospice program, and (d) from oncologists and other physi-
cians. Permission to contact the patient and confirmation that
the patient met the inclusion criteria were obtained from the at-
tending physician of record.
One hundred ninety-eight eligible patients were initially
identified. Thirty-nine were deceased by the time of contact. Of
the 159 potentially eligible patients, 55 patients were excluded.
Reasons for exclusion were the following: unable to contact the
patient after repeated attempts, the patient died before first
scheduled interview, the patient was unable to provide informed
consent, or the patient was too weak or unable to communicate
verbally. In addition, 36 patients refused to participate. Thus, we
report our results based on 68 consenting study participants.
To be considered for the study, patients were required to have
a diagnosis of Stage 3–B or 4 lung cancer or Stage 4 colon cancer,
be capable of providing informed consent, have an expected sur-
vival of at least 1 month, and be either African American or White
(not of Hispanic origin). Ethnicity was self-defined by the patient.
Data were gathered from patients’ medical records and
from in-person interviews. Interviewers were matched with the
ethnicity of the patient in an effort to promote an optimal dia-
logue about these sensitive and difficult topics (30,31).
Baseline data obtained from medical records included diag-
nosis and stage, whether the patient was presently receiving ac-
tive treatment for his or her cancer, and performance status as
measured by the Eastern Cooperative Oncology Group (ECOG)
Performance Scale (32).
The interview protocol was constructed after thorough re-
view of existing tools and consultation with experts in end-
of-life research. Patients were asked whether they had an ad-
vance care plan document, either an LW or a durable power of
attorney for health care (DPOAH). Patients were also asked
about their preferences for life-sustaining measures, including
cardiopulmonary resuscitation (CPR), mechanical ventilation,
tube. Although it is well known in a clinical setting that full re-
suscitation includes both cardiopulmonary resuscitation and
mechanical ventilation, many LW documents separate out these
two interventions, and patients and families often view the de-
sirability of these measures differently. We asked patients if they
would want each of these life-sustaining measures in the event
that their cancer progressed and they were near death (hereafter
referred to as “near death”). Patients were also asked if they
would want to be hospitalized if they were near death.
In asking patients about their preferences, we first provided
a simple, value-neutral description of the intervention, including
a brief description of the possible benefits and burdens. Mea-
sures of spirituality and religiosity were adapted from the Multi-
dimensional Measurement of Religiousness/Spirituality and in-
cluded an overall self-ranking of religiosity and spirituality
(33,34). A number of studies indicate that many people differen-
tiate between religiosity, as referring to a more formal and insti-
tution-based expression of belief, and spirituality, as an individ-
ualized relationship to the transcendent (35,36). Patients were
asked about three specific domains of spiritual coping: (a) col-
laborative religious coping, defined as seeking control through
a partnership with God or a higher power; (b) active religious
surrender, defined as actively giving up control to a higher
power; and (c) seeking spiritual support, defined as searching
for comfort and reassurance through the love and care of a
higher power (33) (see Table 1).
In addition, we asked the open-ended question, “Where do
you get support and strength to cope with and understand your
illness?” to elicit in-depth and spontaneous reflection from pa-
tients with regard to coping with their cancer.
This study was approved by the Institutional Review Board
of the Albert Einstein Healthcare Network in Philadelphia.
Written informed consent was obtained from all participants.
Statistical Analyses
Exact binomial 95% confidence intervals (CIs) were pre-
sented for percentages. Percentages were compared in African
American and White patients using Fisher’s exact test. The
Spearman rank correlation was used to assess the magnitude and

TABLE 1
Questions Relating to Specific Dimensions of Spiritual Coping

Dimensions of Spiritual Coping Question(s)a Abbreviation

Collaborative religious coping
Active religious surrender
Seeking spiritual support
aPotential responses to questions included not at all, somewhat, quite a bit, a great deal.
To what extent do you work together with God or higher power to get Working together with higher power
through hard times?
To what extent do you believe in divine intervention, or the possibility Belief in divine intervention
of miracle that might change the course of your illness?
To what extent do you believe your fate is in the hands of God or a Fate in hands of higher power
higher power?
To what extent do you look to God or a higher power for strength, Looking to higher power for support
support and guidance?
To what extent do you use religion or spirituality to cope with and Using spirituality to cope
understand your illness?
176 True et al. Annals of Behavioral Medicine

direction of associations involving ordinal level (rank) vari- selves moderately to very religious. Almost all patients reported
ables. We controlled for ethnicity using multivariable ordinal lo- a religious affiliation. The majority of African American pa-
gistic regression, specifically the proportional odds model, with tients were Protestant, whereas White patients were predomi-
the ordinal variable as the dependent variable. The proportional nantly Catholic or Jewish (see Table 2).
odds assumption (parallel regression) was satisfied in all re- African Americans patients were more likely to report the
ported results. All probability values are two-tailed. Data analy- belief that their fate was in the hands of higher power compared
ses were performed using SPSS 10.0 and Stata 7. Qualitative with White patients (rs = .25, p = .04). African American pa-
data were categorized and coded using standard qualitative tients were also more likely to report using spirituality to cope
methods (37,38), with the use of a computer-assisted data analy- with their illness (rs = .37, p = .002), turning to higher power for
sis software program, Atlas-ti (39). support (rs = .36, p = .002), and belief in divine intervention (rs =
.27, p = .02) compared with White patients.
RESULTS
We report our results based on 68 patients. African American Preferences for Use of Specific Life-Sustaining
and White patients in our study group were similar in terms of Measures in the Near Death Situation
gender, age, education, and income (see Table 2). African Ameri-
In the near death condition, African American patients
can and White patients were similar in terms of functional status on
were more likely to desire all of the life-supportive measures
the ECOG scale. At the time of the interview, more African Ameri-
(CPR, tube feeding, and mechanical ventilation) than were
can patients were receiving palliative chemotherapy or radiation
White patients (all ps ≤ .001). The greater the extent to which
treatment compared to White patients (63% vs. 47%, p = .22).
patients reported working together with higher power (rs = .20, p
Overall Differences Between African American = .01), the more likely they were to want CPR in the near death
and White Patients in Domains of Spirituality situation. Similarly, turning to higher power for support (rs =
and Coping .34, p = .004), belief in divine intervention (rs = .36, p = .003),
and using spirituality to cope with illness (rs = .34, p = .005)
Fifty-seven of 68 patients (84%) considered themselves
were correlated with preference for CPR in the near death situa-
moderately to very spiritual, and 51 (75%) considered them-
tion. Turning to higher power for support and belief in divine in-
tervention were both associated with preference for CPR after
TABLE 2 controlling for ethnicity.
Characteristics of Study Sample The greater the extent to which patients used each of the
three dimensions of spiritual coping (collaborative religious
African American coping, active religious surrender, and seeking spiritual sup-
Characteristic Patientsa White Patientsb port), the more likely they were to want mechanical ventilation
and tube feeding in the near death situation. However, these as-
Female 20 (53%) 20 (67%)
Age (M) 65 71
sociations were weaker and usually not statistically significant.
Marital status: Married/living 15 (40) 15 (50) We also examined the patient’s desire to be hospitalized in
with partner the near death condition. Thirty-three of 38 (87%) African
High school graduate or above 25 (66) 22 (73) American patients said they would want to be hospitalized if
Religious affiliation they were near death as compared to 19 of 29 (66%) White pa-
Protestant 33 (89) 5 (16) tients (p = .07). The greater the extent to which patients used
Catholic 0 15 (48) each of the three dimensions of spiritual coping, the more likely
Jewish 0 9 (29) they were to want hospitalization in the near death situation.
Other 3 (8) 1 (3) These associations reached statistical significance for turning
None 1 (3) 1 (3) to higher power for support (rs = .23, p = .048), belief in divine
Income less than $12,000c 9 (24) 4 (15)
intervention (rs = .24, p = .055), and using spirituality to cope
Patient ECOG PS status
ECOG PS = 0 10 (26) 12 (40)
(rs = .37, p = .002). After we controlled for patient ethnicity,
ECOG PS = 1 24 (63) 14 (47) only using spirituality to cope remained statistically significant
ECOG PS = 2 3 (8) 2 (7) (p = .02).
ECOG PS = 3 1 (3) 2 (7)
Patient on treatment 24 (63) 14 (47) Completion of LWs and DPOAHs
Patient on hospice care 1 (3) 2 (7)
Sixteen of 68 patients (24%; 95% CI, 14–35%) had a signed
Note. Of the 68 patients, 36 (53%) were identified from the Cancer an LW, and 13 of 68 patients (19%; 95% CI, 11–30%) had a
Center, 19 (28%) from physician referrals, 10 (15%) through the tumor reg- DPOAH. White patients were more likely to have an LW (43%
istry, and 3 (4%) through hospice programs. Higher ECOG PC values indi- vs. 8%, p = .001) and more likely to have a DPOAH (37% vs.
cate lower level of functioning. ECOG PS = Eastern Cooperative Oncology 5%, p = .002) than were African Americans.
Group Performance Scale.
an = 30. bn = 38. cFour patients (1 African American and 3 White) refused The greater the extent to which patients reported working
to answer this question, accounting for the differences in the resulting together with higher power, belief in divine intervention, and us-
percentages. ing spirituality to cope with their illness, the less likely they
Volume 30, Number 2, 2005
were to have an LW (rs = –.21, p = .09; rs = –.32, p = .007; and rs
= –.26, p = .04, respectively).
Religion/Spirituality as a Source of Strength
and Support to Cope With Illness
In response to the open-ended question “Where do you get
strength and support to cope with your cancer?” patients cited
religion/spirituality as a source of strength more often than any-
thing else. (Of 68 patients, 43 said their religious/spiritual faith
was a source of strength, whereas the next most-often men-
tioned source, spouse or family, was cited by 29 patients.) For
many patients, open-ended responses about religion/spirituality
as a source of strength focused on the concept of active religious
surrender, or “giving it up to God or higher power.” For example,
when asked from where he drew strength to cope with his can-
cer, one patient responded as follows:
Where do I get my strength? From the Almighty God, that’s
where I got my strength. I gave my life to Him, and I found
out that I had cancer, and I wouldn’t take it [my life] back
from Him for nuthin’ in the world. I just talk and pray, con-
stantly, every morning I get up and say “Thank You.”
Another patient had a similar view, saying the following:
Well, there’s a saying, “Jehovah Shira,” which means that
He’s everything; “Jehovah Shama,” which means that He’s
always with me; and “Jehovah Rafael,” which means He’s
my healer. And all in all, Jesus is more than enough. So I feel
like I can depend on Him. When I first got cancer, I said
“Lord, I don’t know nothing about this, I’m just turning it
over to you, and you take care of it.“ And so that’s what I’m
letting Him do.
Other patients took strength from the belief that God or a
higher power had a greater plan for them that included the tim-
ing of their death and an afterlife that would be better than their
present life. As one patient stated when explaining how he drew
strength from his religious beliefs,
Well, I just believe that everything is written and then if it’s
His choice for me and it’s my time, that’s the way it’s gonna
be. And it must be a better place there [heaven], because no-
body came back and complained! [laughs] So maybe I’m go-
ing to a better place and less pain than I feel I’m going to ex-
perience before I go.
DISCUSSION
We found that the greater the extent to which patients used
spiritual coping methods, the less likely they were to have an
LW or DPOAH and the more likely they were to desire the use of
life-sustaining measures in the near death situation. Although
these associations were each in the hypothesized direction, they
did not always reach statistical significance.
There has been a growing recognition of the central role of
religion and spirituality in patients’ lives (36,40,41). In end-of-
life care, efforts to increase attention to patients’ spiritual views
and practices have largely been motivated by an understanding
of the limitations of scientific medicine alone in mitigating suf-
fering at end of life (42–46). Our findings suggest that attention
Spiritual Coping at End of Life 177
to patients’ spiritual views and the role of spirituality in coping
with serious illness is essential not only to the holistic care of pa-
tients but also to understanding how patients make decisions at
the end of life, including whether or not they choose to engage in
advance care planning.
When members of the health care team view a patient’s
death as imminent and consider further medical treatment to
be futile, they may initiate a discussion with the patient about
advance care planning, including limiting the use of life-sustain-
ing measures such as CPR. Conflict can arise between the medi-
cal staff and the patient who prefers hospitalization and contin-
ued aggressive care during the terminal phase of their illness. In
the case where a patient’s spiritual and religious beliefs play a
key role in his or her decisions, there may be no easy resolution to
fundamental disagreements about the value of life-sustaining
treatments. In such cases, input from chaplains or other clergy, as
well as greater attention to the patient’s spiritual views on the part
of clinicians, can help diffuse tension, foster understanding, and
aid in the negotiation of a mutually acceptable care plan (36).
Our study group was limited to patients with a specific di-
agnosis of advanced lung or colon cancer. These diagnoses and
stages were chosen because they are diseases with similarly
poor prognoses. Therefore our findings about patients’ treat-
ment preferences and use of advance care plan documents may
not reflect the attitudes and behaviors of patients with other ad-
vanced and eventually fatal diseases such as congestive heart
failure or end-stage renal disease, whose end-of-life course is
different from these advanced cancers.
In our study sample, there was a pronounced ethnic differ-
ence in patients’ religious affiliations. White patients were more
likely to identify themselves as Catholic or Jewish, and African
American patients were more likely to identify themselves as
Protestant. Religious affiliation may have been a potential con-
founding factor in patients’ preferences. The role of specific re-
ligious traditions and beliefs in patients’ preferences for or
against the use of life-sustaining measures is an important area
of study; however, it was not the focus of our research. Neither
did we focus on potentially harmful forms of religious coping,
such as feelings of abandonment by God or clergy that can lead
to increased hopelessness and depression (22,47). We asked pa-
tients about their treatment preferences in a hypothetical sce-
nario in which their cancer had advanced and they were near
death. The use of such hypothetical scenarios, common in most
LWs, may not be an accurate reflection of what patients will ac-
tually choose when the time comes (48,49).
Our results support previous findings that ethnicity is an
important factor in how patients approach end of life. African
American patients were less likely to have an advance directive
and more likely to want the use of life-sustaining measures than
White patients (6–9,29,50). In addition, we found that use of
spiritual coping was strongly associated with preferences for
CPR and hospitalization in the near-death situation, a relation-
ship that merits further study (51). If efforts aimed at improving
end-of-life care are to be successful, they must take into account
the complex interplay of ethnicity and spirituality as they shape
patients’ views and preferences around end of life.
178 True et al.
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