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, H. Reineke-Bracke, L Radbruch, and F Elsner and Goals of Care JOUR AL or PALLIATIVE Volume 9, Number 5, 2006 to Mary Ann Liebert, Inc. IvIEDICINE 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 existential experiences influence the disease process has raised the need for health care professionals to understand the complexity of patients' spiritual pain and distress. Objective: The current study explores the multidimensional nature of spiritual pain, in patients with end-stage cancer, in relation to physical pain, symptom severity, and emotional distress. Designhneasnrements: The study combines a quantitative evaluation of participants' intensity of spiritual pain, physical pain, depression, and intensity of illness, with a qualitative focus 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 hospital 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 contributing factor. The authors maintain that spiritual pain left unaddressed both impedes recovery and contributes to the overall suffering of the patient. I TRODUCTION T I fFFC!'-, or '-,1'11\11 ui\1 III in helping individuals cope with serious illness in hospice, hospital, and other settings are fclirly well documented !_'i especially elmong patients with cancer.h-H Researchers' attention has focused on the concepts of "spirituell pain,"(";- "c\istclltial pain.?" "spir irual distress."!" and "spiritua] probHE POSITIVL 'Spuirua! Pain Project, Bron.". ow York. ~The HealrhCan: Chaplaincv. New York, New York. 1.\tfcmoriclJ 10ClnKL'ltering Callcer Center. \ic\\' York lcm." II and the role of these experiences in a patient's overall sense of well-being. Recent studies have shown that spiritual struggles are connected with psychological distress in patients with canccr'? and healthy ind ividua ls.l v!" Research has fou nd tha t partici pants with spiritua I struggles tend to helve poor physical outcomes and higher rates of mortillit\·.I'i,lh There is a large body of empirical evidence slIg- I\CI\' 1106 )'or~. SPIRITUAL PAIN AMONG PATIENTS WITH ADVANCED gesting the importance of patients' existential experiences, not only in how they manifest in the disease process but also in how they inform patients' 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 patients' suffering arises from the fact that spiritual pain often manifests itself in physical and psychological 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 emotional problems. Indeed, with little knowledge or experience in recognizing that emotional or physical symptoms have spiritual roots, treatment protocols do not have provisions to connect unresolved grief, chronic anxiety, or demoralization22 wi th unresolved spiritua I issues." The current paper, as a systematic study of the phenomenon of spiritual pain, hopes to contribute to the overall body of knowledge that informs the medical treatment of patients with end-stage cancer specifically and of ailing people in general. With the advent of modern medicine, spirituality, 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 distress. As such, spiritual pain has become viewed as a subjective form of pain, whereas physical pain has been looked at through the objective dictates of anatomic facts arrived at through the scientific method of inquiry. The fully embodied experience of pain2:1 has been overshadowed by a dichotomized medical-model approach that distinguishes objective physical pain from subjective personal suffering. This compartmentalization of the human experience of pain began to change with the landmark papers of Melzack and Wall.:!"':!"Their work expanded the conceptualization of pain from a purely sensory phenomenon to a multidimensional construct that integrates motivationalaffective and cognitive--evaluative components with sensory-physiologic ones. Their work began a shift in how physical pain was viewed. At present, 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 report 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 diagnostic imaging of neurophysiologic response also has limitations since it fails to assess pain intensity.F However, most researchers and clinicians 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 illusive concept, but it can nonetheless be identified and quantified. Because diagnostic categories determine treatment protocols, accurate understanding of the underlying origin of physical symptoms is crucial. Thus, it becomes critically important to differentiate between psychiatric, 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 "demoralization syndrome" has highlighted the importance of differentiating psychiatric conditions, such as depression, from existential disorders associated 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 modalities required for different conditions. The current study attempts to identify and measure sp ir ituzrl pain, physical pain, and depression with an aim towards differentiating between these conditions in 57 advanced cancer patients in a palliative care hospital setting. The study also evaluates the type of interventions patients believed would help to ameliorate their spiritual pain. METHODS Setting and sainpte The participants were 57 patients with advanced cancer at Calvary Hospital, who had a prognosis of dying within six months. Calvary MAKO ET AL. 1108 Hospital is a 200-bed, palliative care hospital in 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 religious affiliation. As seen in the table, the majority of participants were Catholic, and nearly a third were Protestant. The average ages of females (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 protocol. The chaplain entered the patient's room, introduced himself or herself, and explained the research project to the patient. Then, the chaplain asked the patient if he/she was interested in participating in the study. If the patient gave verbal consent, the chaplain began the interview. TAllLl Gender Male Female 1. DE~IO(,I,AI'IIIC CII.\R.\C!I RI-.II<..... 01 P.-\Rr IClI',\:,>:I.., (IT = 57) Religion Catholic Protestant Jewish Muslin Hindu Ethnicitv Cauc~sian Black Caribbean Jewish Asian Hispanic res 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 ("exeructating"). 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 rela 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 physical 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?" Severity 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 collected during the interview included patients' age, gender, religious affiliation, and the kinds of interventions they wanted from chaplains . .... n ,-' oll ·HU 59.6 3~ Content analysis was used to classify patients' descriptions of their spiritual pain in terms of Pargament et al.'s2Y three dimensions of spiritual struggles-intrapsychic, interpersonal, and the divine. The descriptions were also classified in terms of their emotional content. The content analysis was conducted by two experienced qualita tive resea rchers. Correlations were conducted to examine the relationships among the intensity of spiritual pain, physical pain, depression, illness severity, and religiosity. The intensity of spiritual pain was further examined with respect to various demographic variables. These comparisons were analyzed by t test, analysis of variance (ANOV A), or ~I-\.I 1h ~2.1 2~ ~9.S 17 5~A 31 17 ~9.8 S.I-\ :;.3 s 3 1.1-\ 5~.~ ~1.1 105 70 -,- ta anal yscs -.> Age ~3-58 59-7~ 75-89 MCllSlI 31 I~ (, ~ ).:) 2 3.5 2 SPIRITUAL PAIN AMO G PATIE TS WITH ADVANCED r depending on the independent variables in the analysis. Additional statistical analyses are described in the text. RESULTS Over 96'y" of patients reported experiencing spiritual pain sometime in their lives, and 61':1., reported 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 between men and women in terms their experience of spiritual pain intensity. Overall, -l8'1., of patients 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 abandoned by God, being without faith and/or a religious/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 difference 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 express their spiritual pain in terms of an intra-psychic 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. Religious affiliation, the nature of the spiritual struggle, 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. 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 experiencing 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 spiritual pain in physical terms and self-reported ratings 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 significantly correlated with both the presence of spiritual pain, 1'(55) = 0.-13, P < 0.001, and its intensity, r(55) = 0.50, P < 0.001. Religiosity was not associated with the experience or intensity of spiritual pain, providing evidence that one need 0 not be religious to experience spiritual pain. differences were found among religious groups with respect to the presence or intensity of spiritual pain, depression, or physical pain, The patients expressed a range of emotions when describing 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 percentages for the accompanying emotions participants experienced in association with a rupture in each category. Spiritual struggles in the intrapsychic 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 accompanied by feelings of isolation (71 %) and regret (24%). Spiritual struggles with the divine tended to involve feelings of resignation and despair (32%), anxiety (28°/.,) and isolation (8%). DISCUSSION The large number of patients experiencing spiritual 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 Selt Intrapsvchic -t °0 Despair I In tcrpersona I Other" 3A"0 Divine FhcJ r.m-ccndcnt Cod / H ighl'r p(lwcr Lite/0Jaturc pain of cancer patients, Since many factors contribute to the overall expression af pain, spiritual pain would ideally be considered as one of the factors involved in the overall expression of pain in cancer patients, Patients' descriptions of their spiritual pain fell into three main categories-intrapsychic, interpersonal, and divine-demonstrating the multidimensionality of spiritual pain, The universality of spiritual pain was also revealed in this study in that the intensity of spiritual pain did not vary with respect to age, gender, religious a ffilia tion, or level of reI igious involvement. Given both the universalitv and the multi-faceted nature of spiritual pain, we propose that when patients report the experience of "pain," more consideration be given to the complexity of the phenomenon and that spiritual pain be considered as a contributing factor. Although physical pain was not significantly correlated with spiritual pain in the current study, approximately a third of the participants described their spiritual pain in quasi-physical terms, such a "deep ache in the heart," an "explosion in the body," or an "all-over physical pain," It is interesting to note that patients receiving morphine therapy for physical pain were more likely to report experiencing spiritual pain, It is possible that with the amelioration of physical pain one is able to more clearly distinguish between physical and spiritual pain, By a llcviating patients' physical pain, clinicians may be given access to the underlying spiritual and existential issues that might have lain dormant under the immediacy of physiologic distress, Once the physical strata of pain has been relieved, patients may come more in contact with the emotional and spi ritual suffering tha t is associa ted with detaching from life and loved ones. donuun HO",,) Isolation (20",,) RL'gret (LO",,) Anvietv (10",,) Isolation (71 ",,) Regret (2~",,) j)c"pair (32"0) .Anvietv (2A°.,) Isoldti(;n (8°0) The idcn ti fica tion of self w ith the physical bod y can often initiate a sense of crisis or spiritual pain in the face of an embodied experience of loss and deterioration, Illustrating this point, one patient observed that his spiritual pain feels like "e\'erything is breaking down and I'm not here anymore," This sense of existential annihilation is a powerful realization that one is separating from life as one ebbs toward death, For others, the sense of spiritual pain is inextricably linked with the physical. For instance, one person indicated tha t he could not tell the difference between physical and spiritual pain, Other patients described their spiritual pain in bodily terms, "like all the clements of my body are diminishing," "a big and "an ache all over my lump in my stomach," body," Another patient observed that his spiritual pain "feels like a bullet hit my heart. I feel the pain in my head too," For just over half of the patients in our sample, spiritual pain was both manifested and communicated through the emotional realm, as they described their pain in intrapsychic terms such as feeling "despair." "regret," or "anxiety," The large proportion of patients who employed emotional language in exploring their spiritual pain may be due in part to the notion that individuals in our culture are typically more versed in psychologica I nosology than they are in language that describes intangible aspects of one's spirituality, A number of theorists and researchers have recognized the need to develop a language that adequately communicates and clarifies phenomena that are transcendent and beyond the sphere of the finite mind,'O,'11 While there appears to be a significant overlap between depression and spiritual pain, the present 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 pain. Based uncertainty of illness. Such an approach is quite different from that of spiritual largclv based on Frankl's:l7-'L) existential work, on the work of Kissane and colleagues22,21' addressing the treatment of "demoralization." we and seeks to enhance patients' spiritual well-bedoubt 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 deand 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 repain 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 patient's story. Patients asked that the chaplain as they reflect upon their lives. Connelly': deCIS i1yei1rnscribes the experience of homesickness "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, tew requested sacrarnen ta I presence (7'X,), which of spiritual healing as a transforrnativc journey leading one home toward a sense of wholeness. would indicate that what is being sought is not intervention as human COIllIn this context, spiritual pain may be viewed ,1S so much religious a symptom calling one back home to a sense of passion. The issue of clinical presence, in the authenticity and reconciliation with earlier perform of being there or being fully present for paby way of sonal pain and unrnct needs. This was felt by ,111 tients in need, has been explored "nu rxing presence."!" "caring presence,"-II,.J2 3-year-old woman who revealed that her spiri.md "healing prescnce"-i'-.J'i in palliative care littual pain stemmed from an incident when she craturc, Presence carries significant developwas 7 years old and the man she thought was her father crudely told her she was not his daughter. mental. spiritual and existential meanings for patients as thcv face end of life issues. Buber.J(, This feeling of being orphaned as a child rcawakdescribes the transcendent nature of the mutual ened yearnings for a sense of belonging amidst "I-Thou " encounter based on unity and wholethe spiritual pain of disconnection she mClY 11,1\'C been experiencing ,1S she gradually separated ncss. Touching on this need for a spiritual enfrom 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 Jesus," 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 beunites the listener and the speaker in a spirit of novel psyyond physical pain management, compassion. chotherapeutic interventions have emerged to meet the growi ng spi ri tUi11a nd ex istcn tia] needs patients sense of of the dying better. Bolstering CONCLUSION dignity and meaning at the end of life Me key aims for palliative care. Chochinov and colWe wou ld encourage health care professionleagues+' ..~.Jhave explored the na tu re of d ign itv als to take a broader view of pain management CI digin end-of-life care. and have developed that recognizes the complexities inherent in disnity-conserving therapy that seeks to augrncnt tinguishing between pain emcrging from an patients' self-worth and meaning through CI na runderlying 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 diend, we recommend that health care professionals carcfullv evaluate the different dimenmensions of meaning in advanced stage cancer 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 believe that a more nuanced understanding of Breitbart and S. Poppito, unpublished data) spiritual pain will contribute to the underpsychotherapeutic interventions for advanced MAKO ET Al. 1112 standing of the multidimensional nature of pain, as well as contribute to the overall CMe and treatment of the patient. The authors maintain that spiritual pain left unaddressed both impedes reco\'ery and contributes to the overall suffering of the patient. ACKNOWLEDGME TS We wish to thank Marv T. O'Neill who initiated this systematic study of spiritual pain. We also wish to thank the staff and patients at Calvary 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 Assistant Kathryn M. Murphy and Research Librarian, Helen Tannenbaum. REFERE CES 1. Dein S, 5tygclll J: Docs being rl'ligiou~ help or hinder coping with chronic illness? Critical litcr.iturc rev il'\\. 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