LOF

CONTENT HIGHLIGHTS:
Use of Palliative Performance Scale in End-of-life Prognostication
F Lau, C.M. Downing, M. Lesperance,}. Shaw, and C Kuziemsky

Racial Differences in Next-of-Kin Participation in an Ongoing

Survey of Satisfaction with End-of- Life Care: A Study of a Study
KS Johnson, K Elbert-Avila. M. Kuchibhatla, and}.A. Tulsky

Differences in Veterans' and Nonveterans' End-of-Life Preferences:

A Pilot Study
S.A. DuJjj, D. Ron is, K Fowler, SMyers Schim, and Fe Jackson
Spiritual Pain among Patients with Advanced Cancer in Palliative Care
C Mako, K Galek, and S R. Poppito

Perceptions of the Term Palliative Care

A. Morstad Boldt, F Yusuj and B.P Himelstem

Closing the Schiavo Case: An Analysis of Legal Reasoning

CD. Kollas and B. Boyer-Kallas

Preparing Caregivers for the Death of a Loved One: A Theoretical

Framework and Suggestions for Future Research
R.S Hebert, H. C. Prigerson, R. Schulz, and R.M. Arnold

Treatment of Fatigue: Modafinil, Methylphenidate, and Goals of Care

H. Reineke-Bracke, L Radbruch, and F Elsner
 JOUR AL or PALLIATIVE IvIEDICINE
Volume 9, Number 5, 2006
to Mary Ann Liebert, Inc.

Spiritual Pain among Patients with Advanced

Cancer in Palliative Care

CATERI A MAKO, Th.M.,1 KATHLEE CALEK, Ph.D.,2 and SHA o R. POPPITO, Ph.D.~

ABSTRACT

Background: The large body-of empirical research suggesting that patients' spiritual and ex-
istential experiences influence the disease process has raised the need for health care profes-
sionals to understand the complexity of patients' spiritual pain and distress.
Objective: The current study explores the multidimensional nature of spiritual pain, in pa-
tients with end-stage cancer, in relation to physical pain, symptom severity, and emotional
distress.
Designhneasnrements: The study combines a quantitative evaluation of participants' inten-
sity of spiritual pain, physical pain, depression, and intensity of illness, with a qualitative fo-
cus on the nature of patients' spiritual pain and the kinds of interventions patients believed
would ameliorate their spiritual pain.
Setting/subjects: Fifty-seven patients with advanced stage cancer in a palliative care hospi-
tal were interviewed by chaplains.
Results: Overall, 96% of the patients reported experiencing spiritual pain, but they expressed
it in different ways: (1) as an intrapsychic conflict, (2) as interpersonal loss or conflict, or (3)
in relation to the divine. Intensity of spiritual pain was correlated with depression (r = 0.43,
P < 0.001), but not physical pain or severity of illness. The intensity of spiritual pain did not
vary by age, gender, disease course or religious affiliation.
Conclusions: Given both the universality of spiritual pain and the multifaceted nature of
pain, we propose that when patients report the experience of pain, more consideration be
given to the complexity of the phenomena and that spiritual pain be considered a contribut-
ing factor. The authors maintain that spiritual pain left unaddressed both impedes recovery
and contributes to the overall suffering of the patient.

I TRODUCTION lcm." II and the role of these experiences in a pa-

tient's overall sense of well-being. Recent studies

T HE POSITIVL

individuals
I fFFC!'-, or '-,1'11\11
ui\1 III in helping
cope with serious illness in hos-
pice, hospital, and other settings are fclirly well
have shown that spiritual struggles are connected
with psychological
ccr'? and healthy
distress in patients with can-
ind ividua ls.l v!" Research has
documented !_'i especially elmong patients with fou nd tha t partici pants with spiritua I struggles
cancer.h-H Researchers' attention has focused on tend to helve poor physical outcomes and higher
the concepts of "spirituell pain,"(";- "c\istclltial rates of mortillit\·.I'i,lh
pain.?" "spir irual distress."!" and "spiritua] prob- There is a large body of empirical evidence slIg-

'Spuirua! Pain Project, Bron.". ow York.

~The HealrhCan: Chaplaincv. New York, New York.
1.\tfcmoriclJ 10ClnKL'ltering Callcer Center. \ic\\' York I\CI\' )'or~.

1106
 SPIRITUAL PAIN AMONG PATIENTS WITH ADVANCED
gesting the importance of patients' existential ex-
periences, not only in how they manifest in the
disease process but also in how they inform pa-
tients' lives in general.'? Moreover, theoretical
analyses of patients' suffering have recently
raised the issue of healthcare professionals' need
to understand the complexity of their suffering. IX
Patients with pain present with a variety of other
symptoms including nonphysical symptoms,
such as anxiety and depression. I'! Part of the
problem in understanding the complexity of pa-
tients' suffering arises from the fact that spiritual
pain often manifests itself in physical and psy-
chological symptoms-Pr". and there generally is
little understanding about the link between such
symptoms and underlying spiritual issues. Thus,
these issues are often treated as medical or emo-
tional problems. Indeed, with little knowledge or
experience in recognizing that emotional or phys-
ical symptoms have spiritual roots, treatment
protocols do not have provisions to connect un-
resolved grief, chronic anxiety, or demoraliza-
tion22 wi th unresolved spiritua I issues." The
current paper, as a systematic study of the phe-
nomenon of spiritual pain, hopes to contribute to
the overall body of knowledge that informs the
medical treatment of patients with end-stage can-
cer specifically and of ailing people in general.
With the advent of modern medicine, spiritu-
ality, especially in the West, has developed as a
distinct field, usually embedded in a religious or
spiritual practice, with its own specially trained
professionals to address issues of spiritual dis-
tress. As such, spiritual pain has become viewed
as a subjective form of pain, whereas physical
pain has been looked at through the objective dic-
tates of anatomic facts arrived at through the sci-
entific method of inquiry. The fully embodied ex-
perience of pain2:1 has been overshadowed by a
dichotomized medical-model approach that dis-
tinguishes objective physical pain from subjective
personal suffering.
This compartmentalization of the human ex-
perience of pain began to change with the land-
mark papers of Melzack and Wall.:!"':!"Their work
expanded the conceptualization of pain from a
purely sensory phenomenon to a multidimen-
sional construct that integrates motivational-
affective and cognitive--evaluative components
with sensory-physiologic ones. Their work began
a shift in how physical pain was viewed. At pres-
ent, the International Association for the Study of
Pain defines pain as "an unpleasant sensory and
CANCER 1107
emotional experience associated with actual or
potential tissue damage and described in terms
of such damage."26 However, many people re-
port pain in the absence of tissue damage or any
likely pathophysiologic cause, suggesting that
such pain may have psychological roots. Using
the subjective report method, there is no way to
distinguish the psychological experience of pain
from that due to tissue damage since this method
avoids tying pain to an underlying stimulus.i"
The objective measurement of pain through di-
agnostic imaging of neurophysiologic response
also has limitations since it fails to assess pain in-
tensity.F However, most researchers and clini-
cians now believe that since pain is a subjective
experience, the patient's self-report provides the
most valid measure of pain.:!?
Like physical pain, spiritual pain can be an il-
lusive concept, but it can nonetheless be identi-
fied and quantified. Because diagnostic cate-
gories determine treatment protocols, accurate
understanding of the underlying origin of phys-
ical symptoms is crucial. Thus, it becomes criti-
cally important to differentiate between psychi-
atric, medical, and spiritual disorders." Adding
spiritual pain to the diagnostic categories could
contribute to our understanding of underlying
symptoms. Clark and Kissane's 2Xwork on "de-
moralization syndrome" has highlighted the im-
portance of differentiating psychiatric conditions,
such as depression, from existential disorders as-
sociated with existential suffering (i.e., existential
anxiety, guilt, despair), which may occur in the
face of illness and death. Their important work
emphasizes the very divergent treatment modal-
ities required for different conditions.
The current study attempts to identify and
measure sp ir ituzrl pain, physical pain, and de-
pression with an aim towards differentiating be-
tween these conditions in 57 advanced cancer pa-
tients in a palliative care hospital setting. The
study also evaluates the type of interventions pa-
tients believed would help to ameliorate their
spiritual pain.
METHODS
Setting and sainpte
The participants were 57 patients with ad-
vanced cancer at Calvary Hospital, who had a
prognosis of dying within six months. Calvary
1108 MAKO ET AL.

Hospital is a 200-bed, palliative care hospital in MCllSlI res

New York City, dedicated to caring for adults
with advanced cancer. Sixty-seven adult patients
were asked to participate in the study and 57
agreed to do so, for a response rate of 85'1.,. All
patients were admitted to the hospital because of
symptom crises. All patients in the study were
oriented to person, place and time. The study was
approved by the Ethics Committee of Calvary
Hospital.
Table 1 shows the distribution of participants
with respect to age, gender, ethnicity. and reli-
gious affiliation. As seen in the table, the major-
ity of participants were Catholic, and nearly a
third were Protestant. The average ages of fe-
males (66.2 years) and males (68.6 years) were
quite similar. --,
Procedure
The patients were interviewed by six chaplains
who were trained in a standard interview proto-
col. The chaplain entered the patient's room, in-
troduced himself or herself, and explained the re-
search project to the patient. Then, the chaplain
asked the patient if he/she was interested in par-
ticipating in the study. If the patient gave verbal
consent, the chaplain began the interview.
TAllLl 1. DE~IO(,I,AI'IIIC CII.\R.\C!I RI-.II<..... 01
P.-\Rr IClI',\:,>:I.., (IT = 57)
....
Patients' physical pain scores for the day of the
interview were taken from their medical charts,
as recorded by nurses in response to the question:
What is the level of your physical pain today?
Physical pain was scored on an 11-point scale
with scores ranging from 0 ("no pain") to 10 ("ex-
eructating"). The medications the patients were
taking were also obtained from their charts.
The chaplains described spiritual pain to the
patients as, "A pain deep in your being that is not
physical." and asked them a series of three re-
la ted questions.
1. What is spiritual pain to you?
2. Are you experiencing spiritual pain now?
3. "How would you rate the intensity of your
spiritual pain?
Patients were asked to rate their spiritual pain
on the same] 'l-point scale used to measure phys-
ical pain.
Participants were asked to rate their religiosity
on a 0 to 5 scale in response to the question,
"What is the level of your faith activity?" Sever-
ity of illness was measured on a similar scale in
response to the question, "How serious do you
believe your illness is?" Level of depression was
measured on a 3-point scale as No = 0, Maybe =
I and Yes = 2, in response to the question, "Do
you think you are depressed?" Other data col-
lected during the interview included patients'
age, gender, religious affiliation, and the kinds of
n
interventions they wanted from chaplains .

Gender ta anal yscs

Male ·HU ,-'
-.>
oll

Female 59.6 3~ Content analysis was used to classify patients'

Age descriptions of their spiritual pain in terms of
~3-58 ~I-\.I 1h
59-7~ ~2.1 2~
Pargament et al.'s2Y three dimensions of spiritual
75-89 ~9.S 17 struggles-intrapsychic, interpersonal, and the
Religion divine. The descriptions were also classified in
Catholic 5~A 31 terms of their emotional content. The content
Protestant ~9.8 17
Jewish S.I-\ s analysis was conducted by two experienced qual-
Muslin :;.3 3 ita tive resea rchers.
Hindu 1.1-\ Correlations were conducted to examine the re-
Ethnicitv lationships among the intensity of spiritual pain,
Cauc~sian 5~.~ 31
Black ~1.1 I~
physical pain, depression, illness severity, and
Caribbean 105 (, religiosity. The intensity of spiritual pain was fur-
Jewish 70 ~ ther examined with respect to various demo-
-,-
Asian ).:) 2 graphic variables. These comparisons were ana-
Hispanic 3.5 2
lyzed by t test, analysis of variance (ANOV A), or
SPIRITUAL PAIN AMO G PATIE TS WITH
r depending on the independent variables in the
analysis. Additional statistical analyses are de-
scribed in the text.
RESULTS
Over 96'y" of patients reported experiencing
spiritual pain sometime in their lives, and 61':1., re-
ported experiencing it at the time of the in terview.
The mean overall spiritual pain score on a scale
from 0 to 10 was 4.7 (standard deviation [SOl =
-l.03), and there was no significant difference be-
tween men and women in terms their experience
of spiritual pain intensity. Overall, -l8'1., of pa-
tients framed their spiritual pain in intra-psychic
terms (e.g., suffering with despair, loss, regret, or
anxiety), 38°" of patients expressed their spiritual
pain in relation to the divine (e.g.. feeling aban-
doned by God, being without faith and/or a re-
ligious/spiritual community), and 13"" described
their spiritual pain in relation to the interpersonal
dimension (e.g.. feeling unwanted by family
members, feeling disconnected from others).
The presence and intensity of spiritual pain did
not vary by gender, age, religiosity or religious
affiliation. However, there was a significant dif-
ference among religious groups with respect to
how they experienced spiritual pain. Catholics
were significantly less likely than individuals of
other religious faiths to describe spiritual pain in
terms of the divine, X2 (1) = 4.64, P < 0.05, even
though they were significantly more religious
than other participants, F(1,54) = -l.75, P < 0.05.
Catholics were significantly more likely to ex-
press their spiritual pain in terms of an intra-psy-
chic conflict, X2 (1) = 7.38, P < 0.05.
Overall, the more religious patients were, the
more they desired religious interventions from
hospital chaplains, 1'(55) = 0.32, P < 0.05. Reli-
gious affiliation, the nature of the spiritual strug-
gle, and the intensity of spiritual pain were not
related to a desire for religious intervention from
a chaplain. Roughly 50'X, of patients indicated
that they would like the chaplain to provide a
sense of "presence," listen to them, visit with
them, or accompany them on their journey.
Twenty-one percent of patients reported that they
would like the chaplain to pray with them, 7%
would like the chaplain to perform a ritual or
sacrament, and 6% wanted to explore the nature
of God.
ADVANCED CANCER 1109
either the presence of spiritual pain, nor its
intensity were significantly correlated with either
physical pain or perceived seriousness of illness.
Only 7'X, (1/ = 4) of participants reported experi-
encing any physical pain. The mean pain score
for these patients was 6.3 (SO = 2.6). Of those
who reported no physical pain, approximately
32% were on analgesic medications, 20% were on
sedatives, and 56% were on both.
Fewer than 30% of the participants described
their spiritual pain in physical terms, such a deep
ache in their heart, an explosion in the body, or
an all-over physical pain. Interestingly, there was
no correlation between the description of spiri-
tual pain in physical terms and self-reported rat-
ings of physical pain. Furthermore, there was a
significant correlation between spiritual pain and
morphine intake, 1'(57) = 0.31, P < 0.05.
Self-reported depression scores were signifi-
cantly correlated with both the presence of spir-
itual pain, 1'(55) = 0.-13, P < 0.001, and its inten-
sity, r(55) = 0.50, P < 0.001. Religiosity was not
associated with the experience or intensity of
spiritual pain, providing evidence that one need
not be religious to experience spiritual pain. 0
differences were found among religious groups
with respect to the presence or intensity of spiri-
tual pain, depression, or physical pain, The pa-
tients expressed a range of emotions when de-
scribing their spiritual pain.
Table 2 shows the percentage of participants
falling into each of Pargament's three classes of
spiritual struggle. The table also provides per-
centages for the accompanying emotions partici-
pants experienced in association with a rupture
in each category. Spiritual struggles in the in-
trapsychic domain were associated with the
widest range of emotions, including despair
or resignation (40'Yo), isolation or abandonment
(20%), regret (10%), and anxiety (10%). Spiritual
struggles in the interpersonal domain were ac-
companied by feelings of isolation (71 %) and re-
gret (24%). Spiritual struggles with the divine
tended to involve feelings of resignation and de-
spair (32%), anxiety (28°/.,) and isolation (8%).
DISCUSSION
The large number of patients experiencing spir-
itual pain at the time of the interview (61%) and
at some point during their lives (96%) highlights
the need to understand and address the spiritual
 1110 MAKO ET AL

Fmotioual distrcs« rc-ultiu-;

[rom rupture ill relationn!
Tripartite mod«! Rcln! i01l1l1 donuun donuun

Intrapsvchic Selt Despair HO",,)

-t °0
I Isolation (20",,)
RL'gret (LO",,)
Anvietv (10",,)
In tcrpersona I Other" Isolation (71 ",,)
3A"0 Regret (2~",,)
Divine FhcJ r.m-ccndcnt j)c"pair (32"0)
Cod / H ighl'r p(lwcr .Anvietv (2A°.,)
Lite/0Jaturc Isoldti(;n (8°0)

pain of cancer patients, Since many factors con- The idcn ti fica tion of self w ith the physical bod y
tribute to the overall expression af pain, spiritual can often initiate a sense of crisis or spiritual pain
pain would ideally be considered as one of the in the face of an embodied experience of loss and
factors involved in the overall expression of pain deterioration, Illustrating this point, one patient
in cancer patients, Patients' descriptions of their observed that his spiritual pain feels like "e\'ery-
spiritual pain fell into three main categories-in- thing is breaking down and I'm not here any-
trapsychic, interpersonal, and divine-demon- more," This sense of existential annihilation is a
strating the multidimensionality of spiritual pain, powerful realization that one is separating from
The universality of spiritual pain was also re- life as one ebbs toward death, For others, the
vealed in this study in that the intensity of spiri- sense of spiritual pain is inextricably linked with
tual pain did not vary with respect to age, gen- the physical. For instance, one person indicated
der, religious a ffilia tion, or level of reI igious tha t he could not tell the difference between phys-
involvement. Given both the universalitv and the ical and spiritual pain, Other patients described
multi-faceted nature of spiritual pain, we propose their spiritual pain in bodily terms, "like all the
that when patients report the experience of clements of my body are diminishing," "a big
"pain," more consideration be given to the com- lump in my stomach," and "an ache all over my
plexity of the phenomenon and that spiritual pain body," Another patient observed that his spiri-
be considered as a contributing factor. tual pain "feels like a bullet hit my heart. I feel
Although physical pain was not significantly the pain in my head too,"
correlated with spiritual pain in the current For just over half of the patients in our sample,
study, approximately a third of the participants spiritual pain was both manifested and commu-
described their spiritual pain in quasi-physical nicated through the emotional realm, as they de-
terms, such a "deep ache in the heart," an "ex- scribed their pain in intrapsychic terms such
plosion in the body," or an "all-over physical as feeling "despair." "regret," or "anxiety," The
pain," It is interesting to note that patients re- large proportion of patients who employed emo-
ceiving morphine therapy for physical pain were tional language in exploring their spiritual pain
more likely to report experiencing spiritual pain, may be due in part to the notion that individuals
It is possible that with the amelioration of phys- in our culture are typically more versed in psy-
ical pain one is able to more clearly distinguish chologica I nosology than they are in language
between physical and spiritual pain, By a llcviat- that describes intangible aspects of one's spiritu-
ing patients' physical pain, clinicians may be ality, A number of theorists and researchers have
given access to the underlying spiritual and exis- recognized the need to develop a language that
tential issues that might have lain dormant un- adequately communicates and clarifies phenom-
der the immediacy of physiologic distress, Once ena that are transcendent and beyond the sphere
the physical strata of pain has been relieved, pa- of the finite mind,'O,'11
tients may come more in contact with the emo- While there appears to be a significant overlap
tional and spi ritual suffering tha t is associa ted between depression and spiritual pain, the pres-
with detaching from life and loved ones. ent study suggests that spiritual pain can be dif-
 SPIRITUAL PAIN AMONG PATIE TS WITH ADVANCED CANCER 1111

ferentiated from depression. This differentiation stL1ge cancer patients to help bolster their sense
is critical since the treatment of depression i~ of meaning and purpose in life as they face the
quite different from that of spiritual pain. Based uncertainty of illness. Such an approach is
on the work of Kissane and colleagues22,21' ad- largclv based on Frankl's:l7-'L) existential work,
dressing the treatment of "demoralization." we and seeks to enhance patients' spiritual well-be-
doubt that it is possible to alleviate spiritual pain ing by teaching them vvays to tap into sources
through psychopha rmacologic trca trncn t. A 1- of meaning in order to cope with the spiritual
though medication often cffcctivclv addresses de- and existential pain of living in the face of
prcssive svrnptomologv, spiritual pain calls for ,1 death.
different approach. While some patients rcquested prayer and
YIi1ny participants expressed their spiritual other religious rituals, thc most frequently re-
pain in terms of "leaving family and home," "not quested intervention was to spend time with a
being able to return horne." or feeling "homeless" health care professional who would listen to the
as they reflect upon their lives. Connelly': de- patient's story. Patients asked that the chaplain
scribes the experience of homesickness CIS i1yei1rn- "stay with me as long as possible," and "stop by
ing to feel at home in the world, and the process every now and then and talk to me." However,
of spiritual healing as a transforrnativc journey tew requested sacrarnen ta I presence (7'X,), which
leading one home toward a sense of wholeness. would indicate that what is being sought is not
In this context, spiritual pain may be viewed ,1S so much religious intervention as human COIll-
a symptom calling one back home to a sense of passion. The issue of clinical presence, in the
authenticity and reconciliation with earlier per- form of being there or being fully present for pa-
sonal pain and unrnct needs. This was felt by ,111 tients in need, has been explored by way of
3-year-old woman who revealed that her spiri- "nu rxing presence."!" "caring presence,"-II,.J2
tual pain stemmed from an incident when she .md "healing prescnce"-i'-.J'i in palliative care lit-
was 7 years old and the man she thought was her craturc, Presence carries significant develop-
father crudely told her she was not his daughter. mental. spiritual and existential meanings for
This feeling of being orphaned as a child rcawak- patients as thcv face end of life issues. Buber.J(,
ened yearnings for a sense of belonging amidst describes the transcendent nature of the mutual
the spiritual pain of disconnection she mClY 11,1\'C "I-Thou " encounter based on unity and whole-
been experiencing ,1S she gradually separated ncss. Touching on this need for a spiritual en-
from her "home" in life toward her impending counter, one patient requested that the chaplain
death. "be present the way Mary was at the cross of Je-
sus," implying the need to have someone stand
by or witness the patient as they confront their
J II tcrrcn tiOII':';
ultimate suffering. The process of being present
As palliative care continues to expand be- unites the listener and the speaker in a spirit of
yond physical pain management, novel psy- compassion.
chotherapeutic interventions have emerged to
meet the growi ng spi ri tUi11a nd ex istcn tia] needs
of the dying better. Bolstering patients sense of CONCLUSION
dignity and meaning at the end of life Me key
aims for palliative care. Chochinov and col- We wou ld encourage health care profession-
leagues+' ..~.Jhave explored the na tu re of d ign itv als to take a broader view of pain management
in end-of-life care. and have developed CI dig- that recognizes the complexities inherent in dis-
nity-conserving therapy that seeks to augrncnt tinguishing between pain emcrging from an
patients' self-worth and meaning through CI na r- underlying biological cause and that stemming
rative life review. Brcitbart and colleagues Vi.,,, from a spiritual or emotional source. To this
have explored the spiritua] and e x istcnt ial di- end, we recommend that health care profes-
mensions of meaning in advanced stage cancer sionals carcfullv evaluate the different dimen-
and end-of-life care. Their team has developed sions of pain and suffering when patients report
meaning-centered group'(' and ind ivid ual (W. the experience of acute or chronic pain. We be-
Breitbart and S. Poppito, unpublished data) lieve that a more nuanced understanding of
psychotherapeutic interventions for advanced spiritual pain will contribute to the under-
1112 MAKO ET Al.

standing of the multidimensional nature of W,l"hington, D.C.: American Psvchological Associa-

pain, as well as contribute to the overall CMe
and treatment of the patient. The authors main-
tain that spiritual pain left unaddressed both
impedes reco\'ery and contributes to the over-
all suffering of the patient.
ACKNOWLEDGME TS
We wish to thank Marv T. O'Neill who initi-
ated this systematic study of spiritual pain. We
also wish to thank the staff and patients at Cal-
vary Hospital for their generous contribution of
time and effort. This research was funded in part
by grants from the John Templeton Foundation
and the Starr Foundation. The-authors also wish
to thank the Research Department's Research As-
sistant Kathryn M. Murphy and Research Librar-
ian, Helen Tannenbaum.
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