The Influence of Awareness of Terminal Condition on Spiritual Well-Being in Terminal Cancer Patients

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Original Article

The Influence of Awareness of Terminal

Condition on Spiritual Well-Being

in Terminal Cancer Patients

Kai-Kuen Leung, MD, MPH, Tai-Yuan Chiu, MD, MHSci, and Ching-Yu Chen, MD

Department of Family Medicine (K.-K.L., T.-Y.C, C.-Y.C), National Taiwan University Hospital and College of Medicine, and Division of Gerontology Research, (C.-Y.C.) National Health Research Institutes, Taipei, Taiwan

Abstract

We developed a Spirituality Transcendence Measure (STM) and studied whether awareness of terminal illness affects spiritual well-being in terminal cancer patients. Three sources of spiritual transcendencedthe situational, the moral and biographical, and the religious aspectdwere assessed in the STM. Cronbach’s a of the STM was 0.95, and the principle axis factor analysis extracted only one factor. Thirty-seven terminal cancer patients with male predominance (59.5%) were studied. Awareness of terminal illness was associated with a higher total STM score (Z ¼ 2.21, P ¼ 0.027), along with the individual scores for each of the three transcendences (Z ¼ 2.39, P ¼ 0.017; Z ¼ 2.71, P ¼ 0.007; and Z ¼ 1.96, P ¼ 0.050). Acceptance of death was associated with a higher situational score (Z ¼ 2.01, P ¼ 0.046) and a higher religious score (Z ¼ 2.27, P ¼ 0.023). Announcement of testament was associated with a higher situational score (Z ¼ 2.30, P ¼ 0.021). We conclude that awareness of terminal illness is associated with spiritual well-being. Telling the complete truth is necessary even when dealing with terminal conditions. J Pain Symptom Manage 2006;31:449--456. Ó 2006 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Key Words

Truth disclosure, spirituality, life quality, terminal care

Introduction

Truth disclosure to cancer patients has been advocated and practiced in Western countries for many years. However, most cancer patients in non-Western countries are unaware of their cancer diagnosis and prognosis.1In Asia, ethi-cal principles of nonmaleficence and benefi-cence are usually placed above the principle of respect for patients’ autonomy.2,3 In such societies, family members have a legitimate and superior claim to decision-making author-ity and responsibilauthor-ity to protect patients even though they are fully competent.4 It is often

This study was supported by the National Science Council (93-2314-B-002-262; 93-2516-S-002-004) and the Department of Health, Executive Yuan, Taipei, Taiwan.

Address reprint requests to: Ching-Yu Chen, MD, Department of Family Medicine, National Taiwan University Hospital and College of Medicine, No. 7, Chung-Shan South Road, Taipei, Taiwan. E-mail:

shirleylin@ha.mc.ntu.edu.tw.

Ó 2006 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.

0885-3924/06/$--see front matter doi:10.1016/j.jpainsymman.2006.02.001

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believed that knowing the diagnosis of cancer might cause patients to lose hope and hasten their death.5,6 As a result, family members and physicians often conceal the cancer diag-nosis and progdiag-nosis from the patient even until the terminal stage.7 With the hospice movement and death education in Taiwan since the 1990s, physicians have become more willing to communicate the cancer diag-nosis to their patients. However, truth dis-closure is incomplete and prognosis of a terminally ill condition is usually not dis-closed to retain hope for the patients.8

From the overall perspective of Asian cancer patients, there is a strong preference to be in-formed by their physicians about their condi-tion.8,9 Moreover, withholding the cancer diagnosis may not prevent patients from know-ing the truth. Many patients can guess their diagnosis from the treatment process, unre-solved symptoms, change in body figure, and the change of body function. Our concerns about telling the truth to cancer patients have not been based on reliable evidence. To the contrary, research has indicated that aware-ness of cancer diagnosis is not related to psy-chiatric disorders,10 and understanding the diagnosis indirectly can lead to more psychiat-ric disturbance.11 However, we also lack reli-able evidence to support truth-telling, especially in the disclosure of terminal illness to cancer patients.

For terminal patients who face death, spiri-tual and religious comfort may be even more important than physical and psychological health. Spirituality is defined as a universal connection to the transcendent and the search for meaning in life that may or may not be linked to a divine figure.12 Religiosity is con-ceptualized as an organized set of beliefs, rit-uals, and practices engaged in with the goal of connecting to a higher power, such as God.13However, the above definitions of spiri-tuality and religiosity are too simplified and vague. Based on the above definitions, health care workers have difficulties in understanding and identifying with patients’ spiritual needs and to effectively intervene. Kellehear,14 in his theoretical model of spiritual needs in pal-liative care, provided a framework in under-standing spirituality and religiosity. In Kellehear’s model, spiritual meaning is built on three sources of transcendence: the

situational, the moral and biographical, in-cluding also the religious aspect. Situational needs arise from personal and social experi-ences in a context of illness. People need to find meaning, purpose, and hope in light of the experience of illness, looking for experi-ences of mutuality, connectedness, and situa-tional transcendence. Moral and biographical needs include finding peace and reconciliation, resolution of past and present dilemmas, re-union with others, moral and social analysis, and looking for forgiveness and closure. Reli-gious needs include reliReli-gious reconciliation, di-vine forgiveness and support, religious rites, religious visitation and literature, discussion about God, eternal life and hope.14In Chinese culture, Confucian philosophy emphasizes bal-ance and harmony. The unity of nature and hu-man beings is the final goal and the highest level of spiritual existence. Unity requires harmony throughout the entire system. To reach this goal, one must start from the pursuit of har-mony inside oneself, then with the surrounding environment, and finally toward nature and God. Taking cultural compatibility into consid-eration, we found that Kellehear’s transcen-dence model is the only available model that can be best fit into the harmonic philosophy of Chinese culture.

To understand the relationship between ter-minal illness awareness and spirituality, it is important to conduct sound research and delineate practical implications. In research, we need to explore the relationship between terminal illness awareness and a patient’s spir-itual well-being. Knowledge of the above rela-tionship will encourage further study into the deeper understanding of spirituality. Further-more, a multidimensional approach to spiritu-ality may assist us in elucidating which aspects of spiritual needs are more related to a pa-tient’s perception of illness. For clinical prac-tice, we need evidence to prove that the practice of ethical principles of nonmalefi-cence and benefinonmalefi-cence is of benefit to patients. Hopefully, understanding the spiritual conse-quences of illness disclosure may encourage physicians to communicate disease prognosis to the patients and overcome the family bar-rier of truth-telling. To our knowledge, to date there has been no other research reporting the relationship between patients’ awareness of terminal illness and spiritual well-being.

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Spirituality and religiosity are defined and assessed in different ways in the literature. There is a paucity of quality instruments, which should be specially designed to measure spiritual well-being and have a sound theoreti-cal base. The Spiritual Well-being Stheoreti-cale was de-vised by Paloutzian and Ellison in 1982,15but the validity and reliability of this scale is ques-tionable.16 The Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) scale is a part of the large FACIT measurement for the assessment of quality of life in cancer therapy.17It comprises two sub-scales measuring a sense of meaning and peace and the role of faith in illness. However, the theoretical base of the FACIT-Sp has not been reported, and some of the questionnaire items mix the concept of faith and spirituality together. In this study, we developed a struc-tured questionnaire to assess the spiritual well-being of terminal cancer patients based on Kellehear’s three dimensional model of spiri-tual needs, evaluating whether awareness of ter-minal illness, acceptance of death, issuance of a testament and treatment expectations affect cancer patients’ spiritual well-being.

Methods

Participants

The subjects in this study were terminal can-cer patients who were consecutively admitted to three hospices in Taipei, Taiwan from Janu-ary, 2004 to July, 2004. In the palliative care units, patients were taken care of by multidisci-plinary hospice care teams, including chap-lains. We informed the patients and family members of the aim of our study and asked for their oral consent to participate. Patients who died of their cancers during the study period were included in the final analysis. Information collected included demographic data on pa-tients and one main family caregiver who was re-sponsible for taking care of the patient at home and during hospitalization, including adminis-tration of patients’ awareness of terminal illness, acceptance of death, treatment expec-tations, and announcement of testament. Pa-tients’ spiritual well-being was rated by the major family caregiver using the Spirituality Transcendence Measure (STM) after the death of the patient.

Instrument

Based on Kellehear’s model of spiritual needs, a STM (Appendix) was developed to measure spiritual well-being in this study. Items in the STM were derived from the collection of past experiences of our research team and per-tinent research in the literature. The entire questionnaire has 22 items (6 for situational transcendence, 10 for moral transcendence, and 6 for religious transcendence). Responses to the STM are based upon a 5-point Likert scale ranging from 5 (highly satisfied) to 1 (highly unsatisfied). Higher values reflected a higher level of spiritual well-being.

Patients’ awareness of terminal illness, acceptance of death, treatment expectation for hospice admission, and announcement of testament were determined after detailed and tactful interviews with patients and families during the admission process. Awareness of terminal illness was rated ‘‘aware’’ if patients understood that they had an incurable cancer, death was unavoidable, and their lifespan was very limited; ‘‘unaware’’ was assessed if patients knew nothing about the disease or if the patients only knew the cancer diagnosis, but were unaware of the terminal condition. Ac-ceptance of death was rated ‘‘fully accepted’’ if patients understood that death is the destiny of life’s journey and the patients felt that they could die without regret; ‘‘partially accepted’’ if patients understood that they were going to die, but still hoped to live longer; and ‘‘denied’’ if a patient could not accept death. Treatment expectations for hospice admission were rated as ‘‘curative,’’ ‘‘symptom control,’’ ‘‘long-term care,’’ or ‘‘a place to die.’’ In Taiwa-nese society, people usually give a nuncupative statement rather than a written testament. In this study, a testament was rated ‘‘completed’’ if a patient had made a written will or a detailed oral directive to his or her family; ‘‘partial’’ if an incomplete oral directive had been given; and ‘‘not at all’’ if no directive had been given by the patient.

Data Analysis

We used SPSS/PC version 11.0 in statistical analysis. Descriptive statistics were computed to describe the demographic characteristics and variables, including patient’s awareness of illness, acceptance of death, issuance of

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a testament, treatment expectations, and spiri-tual well-being. We applied internal reliability tests and factor analysis to assess the psycho-metric properties of the STM. Since our data did not follow a normal distribution, nonpara-metric analysis was applied to examine the data. We used a Mann-Whitney test for the comparison of variables with two independent categories and a Kruskal-Wallis test for the comparison of three or more categories. Rela-tionships between age and spiritual well-being were examined by Spearman’s correlation.

Results

Demographics and Demographic Effects

on Spiritual Well-Being

Thirty-seven consecutive eligible patients who were admitted and died in the hospices of three hospitals during the study period were included in this study. All main family caregivers of the deceased patients completed the STM after the death of their relatives. Most of our patients were elderly men with sec-ondary and college education levels, along with Buddhist religious affiliation. Family care-givers were mostly middle-aged wives with higher education levels and with similar reli-gious affiliations as their deceased relatives (Table 1). Spiritual well-being rated by the

STM did not differ by age, gender, educational level, or religious affiliation of the patients and their family caregivers.

Psychometric Properties of the STM

Item mean scores of the STM ranged from 4.08 to 4.73; standard deviations ranged from 0.45 to 0.90; and skewness ranged from 0.34 to 1.59. The Cronbach’s coefficient a of this data set was 0.95. Item-total correlations ranged from 0.51 to 0.83. Sampling adequacy for the STM revealed a KMO value of 0.63 and a signif-icant Bartlett’s test of sphericity (c2

231¼ 679:57; P ¼ 0.0001), which indicated factor analysis is ordinarily appropriate. Principle axis factoring with oblimin rotation was applied. Scree plot and parallel analysis suggested only one princi-ple factor. Due to the original three transcen-dence structures, three oblique factors were extracted (Table 2). In the three-factor solu-tion, items from the situational transcendence and the moral transcendence scattered into the first and the last factors. Five of the six items of the religious transcendence grouped into the second factor. Inter-factor correlations ranged from 0.36 to 0.60.

Relationship Among Awareness

of Terminal Illness, Acceptance

of Death, Treatment Expectations,

and Announcement of Testament

All patients in this study acknowledged their can-cer diagnoses. However, 12 patients (32.4%) were unaware that they were terminally ill. For accep-tance of death, 19 patients (51.4%) fully accepted, 13 patients (35.1%) partially accepted, and five pa-tients (13.5%) denied. Twenty-four papa-tients (64.9%) expected to receive palliative care and symptom control during admission, eight patients (21.6%) expected curative therapy, one patient prepared to die in the hospice, and four patients gave no answers. Nineteen patients (51.4%) issued a written testament or a complete nuncupative will, seven patients (18.9%) delivered an incomplete nuncupative will, and 11 patients (29.7%) had not made their will. Patients aware of their terminal condition had a higher proportion of making a dy-ing will (c2¼ 9:40, df ¼ 2, P ¼ 0.009) and had greater acceptance of death (c2 ¼ 7:78, df ¼ 2, P ¼ 0.02) than those who were unaware of their ter-minal condition.

Table 1

Demographics of Deceased Cancer Patients and Their Family Caregivers

Patients Caregivers Gender Men 22 (59.5) 13 (35.1) Women 15 (40.5) 24 (64.9) Age (years) <40 3 (8.1) 6 (16.2) 40w64 17 (45.9) 25 (67.6) $65 17 (45.9) 6 (16.2) Education Illiteracy 4 (10.8) 4 (10.8) Primary 10 (27.0) 4 (10.8) Secondary 10 (27.0) 13 (35.1) College 13 (35.1) 16 (43.2) Religion None 2 (5.4) 6 (16.2) Buddhists 28 (75.7) 26 (70.3) Others 7 (18.9) 5 (13.5)

Relationship between patient and caregiver

Spouse 15 (40.5)

Child 11 (29.8)

Sibling 3 (8.1)

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Factors Related to Patients’ Spiritual

Well-Being

Patients who were aware of their terminal ill-ness had a significantly higher score in the three dimensions of the STM and the STM as a whole than those who were unaware of their terminal illness. Patients who had full accep-tance of death had a significantly higher score in the situational and religious dimensions of the STM than those who partially accepted or could not accept their death. Patients who an-nounced a complete testament had a signifi-cantly higher score only in the situation dimension of the STM than in those who had announced an incomplete nuncupative testament or no testament at all (Table 3).

Discussion

Our study may be the first report that empir-ically demonstrates the relationship between awareness of terminal illness and spiritual well-being at the end of life. We used Kelle-hear’s model of spiritual needs as the concep-tual framework of spiriconcep-tually and developed a structured scale to evaluate the three sources of transcendence: the situational, the moral

and biographical, along with religious aspects. Kellehear’s model has the advantages of clear separation of religiosity from other spiritual dimensions, a sound theoretical base, and a multidimensional approach to the complex conceptualization of spirituality. From clinical experience, terminally ill patients have many different kinds of needs at different points of their illness course and have individual differences in spiritual needs. Kellehear’s model of needs can provide a framework for palliative care professionals to understand the complex nature of spiritual needs and how to meet those needs.

Psychometric analysis of the STM revealed promising results in this study. Internal consis-tency reliability (Cronbach’s coefficient) was satisfactory. Factor analysis using principle axis factoring revealed only one major factor. When we limited the number of factors to three to reproduce the conceptual structure of Kellehear’s model, we found that only reli-gious transcendence can be separated from the other two factors. This demonstrated that religiosity is a distinct dimension from the other two spiritual transcendences. From the item mean scores of the STM, we found that

Table 2

Factor Analysis of the Spirituality Transcendence Measure

Items Factor 1 Factor 2 Factor 3

Self-satisfaction in life review (M) 0.934 0.110 0.139

Respect from family and friends (S) 0.808

Fulfill last wishes (S) 0.727

Ready to face death (M) 0.682 0.179

Solve unresolved issues (M) 0.666 0.116

Compensate for all regrets (M) 0.646 0.233

Open another direction of life (M) 0.625 0.186

Issue advance directives (M) 0.587

Understand death is nature (S) 0.556 0.295

Has control to do what one wants to do. (S) 0.543 0.179

Believe in an afterlife (R) 0.462 0.374

Peaceful in dying process (M) 0.381 0.298 0.214

Reward from religious practice (R) 0.946

Peaceful from religious practice (R) 0.878

Receive help from clergy (R) 0.635 0.111

Believe in an afterlife (R) 0.303 0.565 0.214

Religious rites (R) 0.207 0.353 0.211

Access to spiritual support (M) 0.119 0.944

Resolve confusion and anxiety about dying (S) 0.817

Put down spiritual burdens (M) 0.114 0.237 0.791

Support from family (S) 0.201 0.776

Say goodbye before death (M) 0.326 0.369

Inter-factor correlations

Factor 2 0.489

Factor 3 0.602 0.355

Principle axis factoring with oblimin rotation and Kaiser normalization.

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the surrogate responses were skewed to one end. This homogenous set of response to the STM items may affect the results in factor anal-ysis so that principle axis factoring produced only one major factor.

Why awareness of terminal illness affects spiritual well-being is a difficult question to an-swer. Faced with imminent death, people may redirect and reevaluate their lives and turn their attention from bodily needs to spiritual needs. One previous study revealed that termi-nally ill adults have increased spirituality over nonterminally ill or healthy adults.15 Hope is an essential need for human beings. Under-standing one’s life expectancy may allow peo-ple to refocus their hope on ‘‘being’’ rather than ‘‘doing,’’ to emphasize relationships with others and with God and to explore the belief regarding life after death. When patients begin to think about and bring up their spiritual is-sues, they may have the chance to explore and finally resolve them. Thus, awareness of terminal illness may become a turning point, which people set forth to deal with their spiri-tual needs and reach a better level of spirispiri-tual well-being. On the other hand, for patients whose lives have no pleasure, death becomes a release from suffering. Awareness of terminal illness becomes a comfort because people know that death is close at hand.

Although the three spiritual transcendences were highly correlated with each other, differ-ent patidiffer-ent characteristics affected spiritual transcendences differently. Patients who ac-cepted death had better spiritual well-being in situational and religious dimensions but not in a moral dimension. The explanation of the relationship between acceptance of death and religiosity is more apparent. People who face death may seek a relationship with God or some divine figure and may give seri-ous consideration their existence after death. However, the lack of a relationship between acceptance of death and moral transcendence needs further study. We also found that pa-tients who have announced a complete testa-ment had a higher score only in the situational dimension of the STM. In Taiwan, people usually give their wills to their family members orally. The nuncupative will com-monly includes funeral and property arrange-ments, and wishes regarding assets given to family members. The interpersonal and social context of the testament may account for the association with the situational transcendence of spiritual well-being.

Awareness of terminal illness, acceptance of death, and announcement of testament were highly associated with each other and were associated with spirituality. The relationship

Table 3

Spiritual Well-Being and Awareness of Terminal Illness

Spiritual well-being

Awareness of terminal illness Mann-Whitney U test

Aware Unaware

Mean (SD) Mean (SD) Z P (two tailed)

Whole scale 95.54 (9.91) 88.56 (6.82) 2.21 0.027 Situational 32.44 (3.39) 30.00 (3.32) 2.39 0.017 Moral 41.25 (4.36) 37.33 (3.39) 2.71 0.007 Religious 26.28 (3.36) 23.18 (3.38) 1.96 0.050 Acceptance of death Accepted Partial/unaccepted Mean (SD) Mean (SD) Whole scale 96.39 (8.37) 90.33 (10.21) 1.88 0.062 Situational 46.33 (4.39) 42.94 (5.54) 2.01 0.046 Moral 23.42 (2.01) 22.65 (2.42) 0.77 0.471 Religious 26.68 (2.47) 23.53 (4.85) 2.27 0.023 Testament

Given Partial/not given

Mean (SD) Mean (SD)

Whole scale 95.89 (9.33) 90.93 (9.52) 1.69 0.093

Situational 46.16 (5.01) 42.93 (4.98) 2.30 0.021

Moral 23.67 (1.94) 22.44 (2.36) 1.83 0.085

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among these variables and the relationship be-tween each variable and spiritual well-being under the control of other variables requires further studies with larger samples.

Major limitations of our study are as follows: First, we used surrogate responses instead of direct interviews with terminal cancer patients to obtain information about spiritual well-being. The questionnaire interview with termi-nal cancer patients is very difficult, especially for patients in Taiwan who receive hospice care at a very terminal stage. A previous study reported that for more than 80% of patients, the length of hospice admission was within 30 days and by the end, more than 60% of the patients died.7 At this stage, patients are usually too weak or have intractable symptoms that may prevent them from doing a question-naire interview. Moreover, patients’ family members may be reluctant to see their sick rel-atives disturbed. As a result, we used each fam-ily’s main caregiver as a surrogate for the cancer patients. In our study, about 80% of family caregivers were the spouse and chil-dren. Similar results were observed in a previ-ous study in Taiwan.18 With the exception of the patients themselves, family caregivers can best understand patients’ perspectives. How-ever, surrogates may have difficulty in repre-senting the patients for those things that cannot be directly observed, such as patients’ attitudes or values.

Second, patients included in this study were not a representative sample of terminal cancer patients. It is possible that patients who had good spiritual well-being and were satisfied with the hospice care were more likely to be in-cluded in this study. Moreover, this study had a small sample size and homogeneity of responses to the STM. These deficiencies may affect the psychometric testing of the STM, especially in factor analysis. Further stud-ies involving larger sample sizes and a heteroge-neous group of patients are needed.

Third, possible confounding factors existed in the relationship between truth-telling and spiritual well-being. Truth-telling may be easier for patients who were more likely to accept death and be prepared for the bad news. Patients with the above characteristics are also more likely to perceive spiritual well-being. These confounding factors should be elucidated in future studies. With all the

limitations and possible biases, the results in this study should be interpreted with caution. Nevertheless, our findings have pointed out some important clinical implications and directions for future studies. Pertinent to our beliefs about truth-telling, health care profes-sionals who take care of terminal cancer patients should be educated and informed about the benefits of complete truth disclosure. Patients not only need to know the diagnosis, but also need to know when to prepare to go. Knowing that religious belief is an important part of itual well-being and the powerful effects of spir-itual well-being on end-of-life despair,19,20 the role of a hospital chaplain in the hospice care team should be emphasized, especially for pa-tients at terminal stages.

Acknowledgments

The authors are indebted to the faculties of the Department of Family Medicine, National Taiwan University Hospital for their full sup-port in conducting this study.

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Appendix

Spirituality Transcendence

Measure

Situational

Resolve the confusion and anxiety about dying Support from family

Fulfill last wishes with the assistance of family or professional caregivers

Have control to do what one wants to do Respect from family and friends Understand death is a part of natural life Moral and biographical

Access to spiritual support Solve unresolved issues Put down spiritual burdens Open another direction of life Able to issue advance directives Self-satisfaction in life review Compensate or confess for all regrets Peaceful in the dying process Say goodbye before death Ready to face death Religious

Believe in an afterlife Receive help from clergy

Believe in an afterlife reducing anxiety toward death Religious rites

Reward from religious practice Peace from religious practice

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