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Fear of Death and Good Death Among the Young and Elderly with Terminal Cancers in Taiwan
344 Journal of Pain and Symptom Management
Vol. 29 No. 4 April 2005
Original Article
Fear of Death and Good Death Among the Young and Elderly with Terminal Cancers in Taiwan Jaw-Shiun Tsai, MD, Chih-Hsun Wu, MS, Tai-Yuan Chiu, MD, Wen-Yu Hu, PhD, and Ching-Yu Chen, MD Hospice and Palliative Care Unit (J.-S.T., C.-H.W., T.-Y.C., C.-Y.C.), Department of Family Medicine, and School of Nursing Science (W.-Y.H.), College of Medicine and Hospital, National Taiwan University, Taipei, Taiwan
Abstract Fear of death is a common characteristic among palliative care patients. We might think that the elderly display a higher degree of acceptance of the inevitability and less fear in the face of death. This study was aimed at investigating the relationship between the death fear level and the good-death scale in two age groups. The study was conducted in 224 patients with terminal cancers admitted to the Palliative Care Unit in National Taiwan University Hospital during the period of January 1 through October 31, 2001. The mean age was 62.13 ⫾ 15.47 years. The duration of admission in the elderly group was shorter than that of the younger group (P ⬍ 0.05). The severity of death fear decreased gradually in both groups after being admitted to the hospice (P ⬍ 0.05). However, the elderly (ⱖ 65 years of age) displayed higher levels of death fear than the younger group at two days before death (P ⬍ 0.05). A significant negative correlation was observed between the degree of death fear and the total good death score in both groups at two days before death (P ⬍ 0.05). The comprehensive care in the palliative care unit might relate to the relief of the death fear of terminal cancer patients. There is a need for psychological and spiritual care in elderly patients. J Pain Symptom Manage 2005;29:344–351. 쑖 2005 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Death fear, good death, hospice and palliative care, elderly
Introduction As terminally ill patients approach death, fear of death may increase. Helping dying patients to reduce this fear is one of the vital purposes of palliative care.
Address reprint requests to: Ching-Yu Chen, MD, Department of Family Medicine, National Taiwan University Hospital, 7 Chung-Shan South Road, Taipei, Taiwan. Accepted for publication: July 5, 2004.
쑖 2005 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
Fear of death is a common characteristic among palliative care patients.1 Research indicates that age, sex, and religious beliefs are associated with the level of death anxiety,2–7 and that older people have a more moderate attitude toward death than young adults.8,9 Jeffers and Verwoerdt found that the elderly exhibited ambiguous emotions/attitudes in the face of death.10,11 Neimeyer and Fortner reported that older women displayed higher levels of death anxiety than male counterparts.12 Evidence also suggests that an inverse relationship 0885-3924/05/$–see front matter doi:10.1016/j.jpainsymman.2004.07.013
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exists between strong religious beliefs and death fear,13 and that a lack of religious belief, social support, or self-esteem may contribute to a higher degree of death fear.14 Abdel-Khalek concluded that fear of pain, punishment, losing worldly involvement, consequences of religious transgressions and failures, and being parted from loved ones are among major factors of death fear for Arabic or Muslim college students.15 There have been no reported empirical studies designed to understand the cause of death fear and its relationship with a good death. Weisman has defined a good death as one where a patient’s suffering is reduced as much as possible and death is accompanied by dignity.16 Accordingly, a good death includes awareness of the death, accepting it peacefully, arranging one’s will properly, and timing the death appropriately.16 Chao et al. investigated the meaning of good death for terminally ill cancer patients in Taiwan and found that good death meant peace of body, peace of mind, and peace of thought.17 Deaths that are reasonably free of discomfort, in accordance with patients’ wishes, and within acceptable professional and ethical standards are high-quality deaths.18 Research indicates that many symptoms of terminal patients can be relieved, and that a patient’s quality of dying can be improved under the comprehensive care of an interdisciplinary team in a palliative care setting. The awareness of dying is positively correlated with the settling of one’s affairs, timing the death appropriately, and being scored as having a good death.19 Clinical Buddhist chaplains in a palliative care unit provide strength and enlightenment to help patients transcend their death fear and prepare for a good death.20 Research has found that if Taiwanese patients had contacts with clinical Buddhist chaplains two days before death, death fear was lower than that of other patients; a correlation also exists between the degree of death fear experienced and the duration of contacts with the clinical Buddhist chaplains.21 In light of these findings, clinical Buddhist chaplains have played an important role in improving the quality of life of terminally ill patients in some palliative care units in Taiwan.22 Helping patients to have a good death entails not only soothing physical pains, but also
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tending the psychosocial and spiritual needs of patients. In Taiwan, over 50% of terminally ill cancer patients are elderly. Older terminally ill cancer patients usually suffer from more severe symptoms, worse deterioration in function, and more complications than younger patients.23 The physical/mental conditions of these patients often lead to the close involvement of their families in medical decisions, as compared to their younger counterparts or less severely ill patients. Involvement of family in decision making might compromise the patients’ autonomy and interfere with the achievement of their good death. Although the elderly are generally considered to have a higher degree of acceptance of the inevitability and less fear of death, further research is warranted regarding the interrelationships among death fear, good death, and age. Thus, this study is aimed at investigating differences in the degree of death fear between two age groups with terminal cancers, and the relationship between death fear and good death in these two groups.
Methods Patients The participants enrolled in the study were consecutive patients with various terminal cancers admitted to the palliative care unit in the National Taiwan University Hospital during the period from January 1 through October 31, 2001. Participants were identified by admission committee members, and were under active total care provided by a multidisciplinary team that included doctors, nurses, clinical psychologists, social workers, clinical Buddhist chaplains, and volunteers. The team met once a week. The data for this study, collected from the routine records kept at the team meetings, included patient demographic information (age, sex, the primary origins of cancers, the involvement and length of care by the clinical Buddhist chaplains, the number of days as an inpatient, and the number of survival days), assessments of good death at “two days before death” and assessments of death fear at the time points of “on admission,” “one week after admission,” and “two days before death.” Subjects were divided into two age groups, “nonelderly (young) group” and “elderly group,”
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with the cut-off point of 65 years according to the definition of elderly proposed by WHO. The study was approved by the Department of Health, Executive Yuan of Taiwan, and the ethical committee of the National Taiwan University Hospital.
Instruments An appropriate clinical quality-of-dying instrument must be derived from the perspectives of end-of-life care participants and include the multiple domains of experience important to patients and families.24 Thus, based on the Weisman’s definition of a good death, the assessment of good death in the study consists of 5 factors, including awareness that one is dying (0 ⫽ complete ignorance, 3 ⫽ complete awareness), accepting death peacefully (0 ⫽ complete unacceptance, 3 ⫽ complete acceptance), arranging one’s will (0 ⫽ no reference to the patient’s will, 1 ⫽ following the family’s will alone, 2 ⫽ following the patient’s will alone, 3 ⫽ following the will of both the patient and their family), death timing (0 ⫽ no preparation, 1 ⫽ the family alone had prepared, 2 ⫽ the patient alone had prepared, 3 ⫽ both the patient and their family had prepared), and degree of physical comfort 3 days before death (0 ⫽ a lot of suffering, 1 ⫽ suffering, 2 ⫽ a little suffering, 3 ⫽ no suffering). Following the death of each patient, a score from 0–15 was recorded to summarize the extent to which it was a good death.19 The opinion of each member was considered and the final score for each patient was decided jointly at the team meeting. The good death scores of 163 patients were collected and analyzed. The assessment of death fear, made jointly by members at the team meeting, had 5 scale scores: 1 ⫽ very little fear, peaceful, and happy; 2 ⫽ little fear but can be managed and no company required; 3 ⫽ fear and company is required but the fear can be managed; 4 ⫽ extreme fear, company required, and fear of sleeping at night; 5 ⫽ insanity and confusion, losing autonomy, and rejecting help from others.21 We collected death fear responses on admission of 173 patients, death fear responses after one week of admission of 100 patients, and death fear responses two days before death of 122 patients.
Statistical Analysis All data were analyzed using SPSS 10.0 statistical software. Frequency, mean, and standard
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deviation were used to describe the demographic data. Mean and standard deviations were used to analyze the “death fear” and the “good death” variable. Pearson correlations were used to analyze the correlations between the “death fear” variable and the “good death” variable. We used t-tests to compare the differences of all variables between two age groups; and paired t-test was used to compare the differences of “death fear” between three time points within each age group. A P value less than 0.05 was considered statistically significant.
Results The subjects of this study included 224 hospitalized patients with terminal cancers: 129 men and 95 women. The mean (SD) age was 62.13 (⫾15.47) years. With regard to the primary cancer origins in the subject group, lung cancer patients was the largest group (21.0%), followed by liver cancer patients (17.4%), and head and neck cancer patients (11.6%). The mean (SD) duration of hospitalization of the subject group was 12.62 (⫾10.09) days. The mean (SD) survival time of the subject group was 17.01 (⫾21.94) days (Table 1). The mean (SD) age of the men was 63.80 (⫾15.50) years, whereas the mean (SD) age of the women was 59.85 (⫾15.21) years. There was no statistical difference in age between male and female groups (Table 2). There were 114 subjects in the non-elderly (young) group (⬍65 years old), of whom 62 Table 1 Demographic Data of the 224 Terminal Cancer Patients Variable
Mean (SD)
n (%)
Age (year) 62.13 ⫾ 15.47 Sex Male 129 (57.6) Female 95 (42.4) Primary site of cancer Liver 39 (17.4) Lung 47 (21.0) Head and neck 26 (11.6) Stomach 19 (8.5) Brain 3 (1.3) Cervix and ovary 13 (5.8) Breast 12 (5.4) Leukemia and lymphoma 3 (1.3) Unknown 5 (2.2) Others 57 (25.4) Duration of admission (days) 12.62 ⫾ 10.09 Survival time (days) 17.01 ⫾ 21.94
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Table 2 Frequency and Descriptive Statistics of Age and Sex in Two Age Groups
Male Female Total
Total Mean ⫾ SD
Age ⬍ 65 n (%)
Age ⱖ 65 n (%)
63.80 ⫾ 15.50 59.85 ⫾ 15.21 62.13 ⫾ 15.47
62 (54.4) 52 (45.6) 114 (100.0)
67 (60.9) 43 (39.1) 110 (100.0)
were men (54.4%) and 52 were women (45.6%); of the 110 patients in the elderly group (ⱖ 65 years old), 67 were men (60.9%) and 43 were women (39.1%) (Table 2). The mean (SD) duration of hospitalization for the non-elderly group (14.18 [⫾12.08] days) was significantly longer than that of the elderly group (11.00 [⫾8.85] days) (P ⬍ 0.05). However, the survival time did not show any statistical difference between the two age groups (Table 3). With regard to the fear of death, the death fear score of the elderly group was significantly higher then the non-elderly group at the time of “two days before death.” However, there was no significant difference between age groups at the other two time points, that is, “on admission” and “a week after admission” (Table 4). Concerning the within-group differences among time periods on death fear, the death fear score at “on admission” was significantly higher than that at “a week after admission;” and the death fear score at “a week after admission” was significantly higher then that at “two days before death” in both groups (Table 5). In brief, the levels of death fear decreased gradually after admission in both age groups. Regarding the good death scale, there was no significant difference between the non-elderly and the elderly group in either average score of individual items or the sum of all items on assessment (Table 6). However, with regard to the correlation between “death fear” and “good death” in the non-elderly group, there was a significant negative correlation between the death fear score at “a week after admission” and
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the “Acceptance” subscale of the good death scale (P ⬍ 0.05). There were also significant negative correlations between the death fear score at “two days before death” and the “Awareness” subscale (P ⬍ 0.01), “Acceptance” subscale (P ⬍ 0.01), “Timeliness” subscale(P ⬍ 0.05), and the total score (P ⬍ 0.01) of the good death scale (Table 7). In the elderly group, there were significant negative correlations between the death fear score at “two days before death” and the “Propriety” subscale (P ⬍ 0.05), “Timeliness” subscale (P ⬍ 0.05), “Comfort” subscale (P ⬍ 0.01), and the total score (P ⬍ 0.05) of the good death scale (Table 8).
Discussion As cancer has been the leading cause of death worldwide for more than a decade, palliative care is very important for terminal cancer patients. Over 50% of terminally ill cancer patients in Taiwan are elderly. In general, elderly patients’ physical/mental conditions often compromise their state of autonomy, which may also interfere with the achievement of their good death. Consequently, this study was designed to investigate differences in the degree of death fear between the young and elderly groups with terminal cancers, and the relationship between death fear and good death. In this sample of 224 patients, the analyses suggested the following: First, the elderly group displayed a higher degree of death fear as compared to the young group at two days before death. Second, the level of death fear, irrespective of age, decreased under the comprehensive care in a palliative setting. Third, patients with a lower death fear level scored higher on the good death scale in both age groups, especially at two days before death. These findings suggest that reducing death fear represents an important factor toward a good death.
Table 3 Duration of Admission and Survival Time in Two Age Groups Age ⬍ 65
Duration of admission (days) Survival time (days) P ⬍ 0.05.
a
Age ⱖ 65
n
Mean ⫾ SD
n
Mean ⫾ SD
t
114 91
14.18 ⫾ 12.08 19.63 ⫾ 25.73
110 87
11.00 ⫾ 8.85 14.26 ⫾ 16.83
2.25a 1.65
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Table 4 Scores of Death Fear in Two Age Groups at Three Time Points During Admission Severity of Death Fear Age ⬍ 65 Time Point On admission 1 week after admission 2 days before death
Age ⱖ 65
n
Mean ⫾ SD
n
Mean ⫾ SD
t
91 55 65
3.59 ⫾ 0.65 2.20 ⫾ 0.80 1.88 ⫾ 0.70
83 45 57
3.49 ⫾ 0.63 2.31 ⫾ 0.60 2.23 ⫾ 0.78
1.02 ⫺0.77 ⫺2.63a
P ⬍ 0.05.
a
Although previous studies indicate that the death fear level of elderly patients is generally lower than that of younger counterparts,25,26 this study showed no significant difference in the death fear level between both age groups on admission and one week after admission. The elderly group’s death fear level tended to be higher than that of younger people at two days before death. Besides differences in the primary origin of cancer, physical conditions also vary between the elderly and the non-elderly groups. Compared to non-elderly patients, elderly people often have multiorgan dysfunction, multiple degenerative diseases, atypical clinical manifestations of diseases, and higher sensitivity to drug side effects. As a result of the cognitive disability, poorer vision, and hearing loss in most elderly people, it is often more difficult to communicate with them.23 Although the average survival period was longer for elderly cancer patients than for the younger patients in a previous study,27 a rapidly deteriorating physical condition after hospitalization and an unstable illness caused elderly people to have fewer days of hospitalization (11 vs. 14.18 days). Perhaps due to elderly patients having fewer days of hospitalization, more consciousness and communication difficulties, and family members’
domination and ignorance of patients’ opinions, elderly patients had less time in contact with clinical Buddhist chaplains (27.36 ⫾ 51.85 vs. 52.24 ⫾ 84.04 min). It may also be true that younger patients are likely to have more significant spiritual distress and death anxiety, and consequently, the medical team provides more care. These factors might explain why elderly patients displayed a higher degree of death fear at two days before death. Thus, one cannot take for granted that the elderly display a higher degree of acceptance of the inevitability of death and less fear in the face of death. In addition to relieving their physical discomforts, clinicians should pay attention to the importance of psychospiritual care for the elderly. It is necessary to keep in close communication with their families, respect their autonomy, and promote their spirituality. Hospice care is intended to decrease patients’ death fear levels and to work towards the goal of a good death through comprehensive care, which includes physical, psychological, social, and spiritual cares. In addition to other professional specialists, clinical Buddhist chaplains play an important role in the process by providing spiritual guidance to patients and family members in the face of death. This can alleviate patients’ physical and psychological
Table 5 Paired Sample t-test on “Severity of Death Fear” At Three Time Points During Admission Group
Time Point 1
Time Point 2
Paired Difference Mean
t
Age ⬍ 65
On admission 1 week after admission On admission
1 week after admission 2 days before death 2 days before death
1.38 0.41 1.72
7.73a 3.00b 12.67a
Age ⱖ 65
On admission 1 week after admission On admission
1 week after admission 2 days before death 2 days before death
1.27 0.26 1.28
7.76a 2.28c 7.74a
P ⬍ 0.001. P ⬍ 0.01. c P ⬍ 0.05. a b
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Table 6 Scores of Good Death in Two Age Groups Age ⬍ 65 n Awareness Acceptance Propriety Timeliness Comfort Total score
87 87 87 87 87 87
Age ⱖ 65
Mean ⫾ SD
n
⫾ ⫾ ⫾ ⫾ ⫾ ⫾
76 76 76 76 76 76
2.75 2.61 2.77 2.75 2.56 13.44
0.53 0.64 0.66 0.69 0.56 2.37
Mean ⫾ SD
t
⫾ ⫾ ⫾ ⫾ ⫾ ⫾
1.31 0.17 1.73 0.81 ⫺0.64 1.03
2.63 2.59 2.57 2.66 2.62 13.05
0.59 0.66 0.82 0.72 0.54 2.41
Awareness ⫽ aware that one is dying; Acceptance ⫽ accepting death peacefully; Propriety ⫽ arranging one’s will properly; Timeliness ⫽ death timing; Comfort ⫽ degree of physical comfort.
suffering, and decrease the death fear level. In our hospice ward, clinical Buddhist chaplains have provided extensive assistance in the areas of religious and cultural consultations, which helps patients towards a good death.22,28 Our study shows that the death fear levels decreased continuously for patients who entered our hospice ward. That might be related to the active total care in the palliative care unit. Patients with a lower death fear level score higher on the total good death scale in both age groups, especially at two days before death. To decrease the patients’ death fear level may facilitate a good death. If we focus on the individual items of the good death scale, it is interesting that the correlative items are different between the two age groups. Whether a cancer patient knows fully that death is near, whether one can accept peacefully the fact of dying, and whether the patient and family members are ready to accept the patient’s death are important factors associated with a good death in the young group. On the other hand,
whether the patient and family members are ready to accept the patient’s death, whether the patient and family members are satisfied with the arrangement of will, and whether patients are comfortable physically are associated with a good death in the elderly group. Thus, the issues emphasized for a good death differ by age. This may guide clinical practice. Proxy evaluation by the hospice care team was used in this study. According to Steinhauser et al.,24 surrogate observation is better used when direct assessment by the patient is not available, but it is not a very good index of the patient’s subjective feeling. Thus, the results of this study should be interpreted with caution because the data were not directly reported by the patients. As a single item was used to assess death fear in the study, some other aspects of death fear were not assessed. Although we believe that active comprehensive care in a palliative care unit is helpful to decrease death fear and improve the quality of dying, the results of the study could not clarify the effects of the
Table 7 Correlation Between Death Fear and Good Death in the Young Group (Age ⬍ 65) Death Fear
Good Death
On Admission 2 days Before Total Admission 1 week Death Awareness Acceptance Propriety Timeliness Comfort Score Death Fear On admission 1 week after admission 2 days before death Good Death Awareness Acceptance Propriety Timeliness Comfort Total score P ⬍ 0.01. P ⬍ 0.05.
a b
1
⫺0.645a 1
⫺0.271b 0.268 1
0.177 ⫺0.298
0.189 ⫺0.332b
0.190 ⫺0.186
0.110 ⫺0.267
⫺0.066 0.159 0.135 ⫺0.302
⫺0.444a
⫺0.512a
⫺0.275
⫺0.308b
⫺0.273 ⫺0.475a
1
0.666a 1
0.527a 0.671a 1
0.618a 0.651a 0.719a 1
0.131 0.232b 0.321a 0.192 1
0.762a 0.850a 0.863a 0.850a 0.475a 1
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Table 8 Correlation Between Death Fear and Good Death in the Elderly Group (Age ⱖ 65) Death Fear
Good Death
On Admission 2 days Before Total Admission 1 week Death Awareness Acceptance Propriety Timeliness Comfort Score Death Fear On admission 1 week after admission 2 days before death Good Death Awareness Acceptance Propriety Timeliness Comfort Total score
1
⫺0.619a 1
⫺0.509a 0.473a 1
0.056 ⫺0.276
⫺0.117 ⫺0.060
0.013 ⫺0.033
0.045 ⫺0.174
0.113 0.032 ⫺0.089 ⫺0.151
⫺0.100
⫺0.038
⫺0.332b
⫺0.300b
⫺0.433a ⫺0.327b
0.439a 0.557a 1
0.676a 0.405a 0.533a 1
1
0.540a 1
0.055 0.119 0.282b 0.173 1
0.753a 0.740a 0.821a 0.794a 0.426a 1
P ⬍ 0.01. P ⬍ 0.05.
a b
comprehensive care on terminal cancer patients. The goal of our palliative care unit is to provide comprehensive care in light of patients’ physical, psychosocial, and spiritual needs. Under the concerted efforts of the members of the multidisciplinary team, the death fear level in the advanced cancer patients tends to decrease, and lower death fear correlates with higher good death scores. However, elderly people with advanced cancers have more symptoms, unstable conditions, shorter periods of hospitalization, and less contact time with clinical Buddhist chaplains. As a result, medical personnel must pay more attention to these patients’ daily care and psychospiritual needs so that their death fear levels may be decreased. Further studies designed to illustrate the effect of palliative care on good death and death fear of terminal cancer patients are necessary.
Acknowledgments This study was supported by the National Science Council (NSC 91-2314-B-002-224) and the Department of Health (DOH90-TD-1126), Executive Yuan in Taiwan. The authors also thank Dr. C.Y. Wu for her assistance in preparing the manuscript.
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2nd ed. New York: Oxford University Press, 1999: 883–907. 2. Keller JW, Sherry D, Piotrowski C. Perspectives on death: A developmental study. J Psychology 1984; 116:37–47. 3. Kalish RA. The social context of death and dying. In: Binstock RH, Shanas E, eds. Handbook of aging and the social sciences, 2nd ed. New York: Van Nostrand Reinhold, 1985:149–170. 4. Neimeyer RA. Cognitive structure and death anxiety. Death Studies 1986;10:177–190. 5. Neimeyer RA, Neimeyer GJ. Death anxiety and counseling skill in the suicide interventionist. Suicide Life-Threatening Behav 1984;14:126–131. 6. Immarino NK. Relationship between death anxiety and demographic variables. Psychol Reports 1975;17:262. 7. Gesser G, Wong PTP, Reker GT. Death attitudes across the life-span: The development and validation of the death attitude profile. Omega 1987;2:113–128. 8. Bengston VL, Cuellar JB, Ragan PK. Stratum contrast and similarities in attitudes toward death. J Gerontol 1977;32:76–88. 9. Kalish RA, Reynolds D. Death and ethnicity: A psychocultural study. Los Angles: University of Southern California Press, 1981. 10. Jeffers FC, Verwoerdt A. How the old face death. In: Busse EW, Pfeiffer E, eds. Behavior and adaptation in late life. Boston: Little Brown, 1977. 11. Depaola J, Griffin M, Young JR, et al. Death anxiety and attitudes toward the elderly among older adults: The role of gender and ethnicity. Death Studies 2003;27(4):335–354. 12. Neimeyer RA, Fortner BV. Death anxiety in the elderly. In: Maddox G, eds. Encyclopedia of aging, 2nd ed. 1995:252–253. 13. Bond CW. Religiosity, age, gender and death anxiety. Available at dunamai.com/surrey/fddy4/ fddy.htm.
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14. Cicirelli VG. Fear of death in older adults: Predictions from terror management theory. J Gerontol B Psychol Sci Soc Sci 2002;57(4):358–366. 15. Abdel-Khalek AM. Why do we fear death? The construction and validation of the Reasons for Death Fear Scale. Death Stud 2002;26(8):669–680. 16. Weisman DS. Appropriate death and the hospice program. Hospice J 1988;4:65–77. 17. Chao CSC. The meaning of good dying of Chinese terminally ill cancer patients in Taiwan. PhD thesis, Frances Payne Bolton School of Nursing, Case Western Reserve University, 1993. 18. Patrick DL, Curtis JR, Engelberg RA, Nielsen E, McCown E. Measuring and improving the quality of dying and death. Ann Intern Med 2003;139:410–415. 19. Cheng SY, Chiu TY, Hu WY, et al. A pilot study of good death in terminal cancer patients. Chin J Fam Med 1996;6:83–92. 20. Bhikkhuni TT, Bhikkhuni MS, Chen CY, et al. Spiritual care for terminal patients with head and neck cancer [in Chinese]. Taiwan J Hospice Palliat Care 2002;7:269–282. 21. Chen CY, Chiu TY, Bhikkhuni TT, et al. Influencing factors of death fear in terminal cancer patients. Taiwan J Hospice Palliat Care 2003;8(2):134–142.
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22. Chen CY, Chiu TY, Bhikkhuni TT, Bhikkhu HM. The indigenous culture of spiritual care in Taiwan [in Chinese]. Taiwan J Hospice Palliat Care 2002; 7:20–32. 23. Hsu HC, Hu WY, Chuang RB, Chiu TY, Chen CY. Symptoms in the elderly with terminal cancer: A study in Taiwan [in Chinese]. Formosan J Med 2002;6:465–473. 24. Steinhauser KE, Clipp EC, Tulsky JA. Evolution in measuring the quality of dying. J Palliat Med 2002;5(3):407–414. 25. Cicirelli VG. Personal meanings of death in relation to fear of death. Death Stud 1998;22(8): 713–733. 26. Tang CS, Wu AM, Yan EC. Psychosocial correlates of death anxiety among Chinese college students. Death Stud 2002;26(6):491–499. 27. Porzsolt F, Zeeh J, Platt D. Palliative therapies in elderly cancer patients. Drugs Aging 1995;6(3): 192–209. 28. Braun KL, Zir A. Roles for the church in improving end-of-life care: Perceptions of Christian clergy and laity. Death Stud 2001;25(8):685–704.
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Original Article
Fear of Death and Good Death Among the Young and Elderly with Terminal Cancers in Taiwan Jaw-Shiun Tsai, MD, Chih-Hsun Wu, MS, Tai-Yuan Chiu, MD, Wen-Yu Hu, PhD, and Ching-Yu Chen, MD Hospice and Palliative Care Unit (J.-S.T., C.-H.W., T.-Y.C., C.-Y.C.), Department of Family Medicine, and School of Nursing Science (W.-Y.H.), College of Medicine and Hospital, National Taiwan University, Taipei, Taiwan
Abstract Fear of death is a common characteristic among palliative care patients. We might think that the elderly display a higher degree of acceptance of the inevitability and less fear in the face of death. This study was aimed at investigating the relationship between the death fear level and the good-death scale in two age groups. The study was conducted in 224 patients with terminal cancers admitted to the Palliative Care Unit in National Taiwan University Hospital during the period of January 1 through October 31, 2001. The mean age was 62.13 ⫾ 15.47 years. The duration of admission in the elderly group was shorter than that of the younger group (P ⬍ 0.05). The severity of death fear decreased gradually in both groups after being admitted to the hospice (P ⬍ 0.05). However, the elderly (ⱖ 65 years of age) displayed higher levels of death fear than the younger group at two days before death (P ⬍ 0.05). A significant negative correlation was observed between the degree of death fear and the total good death score in both groups at two days before death (P ⬍ 0.05). The comprehensive care in the palliative care unit might relate to the relief of the death fear of terminal cancer patients. There is a need for psychological and spiritual care in elderly patients. J Pain Symptom Manage 2005;29:344–351. 쑖 2005 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Death fear, good death, hospice and palliative care, elderly
Introduction As terminally ill patients approach death, fear of death may increase. Helping dying patients to reduce this fear is one of the vital purposes of palliative care.
Address reprint requests to: Ching-Yu Chen, MD, Department of Family Medicine, National Taiwan University Hospital, 7 Chung-Shan South Road, Taipei, Taiwan. Accepted for publication: July 5, 2004.
쑖 2005 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
Fear of death is a common characteristic among palliative care patients.1 Research indicates that age, sex, and religious beliefs are associated with the level of death anxiety,2–7 and that older people have a more moderate attitude toward death than young adults.8,9 Jeffers and Verwoerdt found that the elderly exhibited ambiguous emotions/attitudes in the face of death.10,11 Neimeyer and Fortner reported that older women displayed higher levels of death anxiety than male counterparts.12 Evidence also suggests that an inverse relationship 0885-3924/05/$–see front matter doi:10.1016/j.jpainsymman.2004.07.013
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exists between strong religious beliefs and death fear,13 and that a lack of religious belief, social support, or self-esteem may contribute to a higher degree of death fear.14 Abdel-Khalek concluded that fear of pain, punishment, losing worldly involvement, consequences of religious transgressions and failures, and being parted from loved ones are among major factors of death fear for Arabic or Muslim college students.15 There have been no reported empirical studies designed to understand the cause of death fear and its relationship with a good death. Weisman has defined a good death as one where a patient’s suffering is reduced as much as possible and death is accompanied by dignity.16 Accordingly, a good death includes awareness of the death, accepting it peacefully, arranging one’s will properly, and timing the death appropriately.16 Chao et al. investigated the meaning of good death for terminally ill cancer patients in Taiwan and found that good death meant peace of body, peace of mind, and peace of thought.17 Deaths that are reasonably free of discomfort, in accordance with patients’ wishes, and within acceptable professional and ethical standards are high-quality deaths.18 Research indicates that many symptoms of terminal patients can be relieved, and that a patient’s quality of dying can be improved under the comprehensive care of an interdisciplinary team in a palliative care setting. The awareness of dying is positively correlated with the settling of one’s affairs, timing the death appropriately, and being scored as having a good death.19 Clinical Buddhist chaplains in a palliative care unit provide strength and enlightenment to help patients transcend their death fear and prepare for a good death.20 Research has found that if Taiwanese patients had contacts with clinical Buddhist chaplains two days before death, death fear was lower than that of other patients; a correlation also exists between the degree of death fear experienced and the duration of contacts with the clinical Buddhist chaplains.21 In light of these findings, clinical Buddhist chaplains have played an important role in improving the quality of life of terminally ill patients in some palliative care units in Taiwan.22 Helping patients to have a good death entails not only soothing physical pains, but also
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tending the psychosocial and spiritual needs of patients. In Taiwan, over 50% of terminally ill cancer patients are elderly. Older terminally ill cancer patients usually suffer from more severe symptoms, worse deterioration in function, and more complications than younger patients.23 The physical/mental conditions of these patients often lead to the close involvement of their families in medical decisions, as compared to their younger counterparts or less severely ill patients. Involvement of family in decision making might compromise the patients’ autonomy and interfere with the achievement of their good death. Although the elderly are generally considered to have a higher degree of acceptance of the inevitability and less fear of death, further research is warranted regarding the interrelationships among death fear, good death, and age. Thus, this study is aimed at investigating differences in the degree of death fear between two age groups with terminal cancers, and the relationship between death fear and good death in these two groups.
Methods Patients The participants enrolled in the study were consecutive patients with various terminal cancers admitted to the palliative care unit in the National Taiwan University Hospital during the period from January 1 through October 31, 2001. Participants were identified by admission committee members, and were under active total care provided by a multidisciplinary team that included doctors, nurses, clinical psychologists, social workers, clinical Buddhist chaplains, and volunteers. The team met once a week. The data for this study, collected from the routine records kept at the team meetings, included patient demographic information (age, sex, the primary origins of cancers, the involvement and length of care by the clinical Buddhist chaplains, the number of days as an inpatient, and the number of survival days), assessments of good death at “two days before death” and assessments of death fear at the time points of “on admission,” “one week after admission,” and “two days before death.” Subjects were divided into two age groups, “nonelderly (young) group” and “elderly group,”
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with the cut-off point of 65 years according to the definition of elderly proposed by WHO. The study was approved by the Department of Health, Executive Yuan of Taiwan, and the ethical committee of the National Taiwan University Hospital.
Instruments An appropriate clinical quality-of-dying instrument must be derived from the perspectives of end-of-life care participants and include the multiple domains of experience important to patients and families.24 Thus, based on the Weisman’s definition of a good death, the assessment of good death in the study consists of 5 factors, including awareness that one is dying (0 ⫽ complete ignorance, 3 ⫽ complete awareness), accepting death peacefully (0 ⫽ complete unacceptance, 3 ⫽ complete acceptance), arranging one’s will (0 ⫽ no reference to the patient’s will, 1 ⫽ following the family’s will alone, 2 ⫽ following the patient’s will alone, 3 ⫽ following the will of both the patient and their family), death timing (0 ⫽ no preparation, 1 ⫽ the family alone had prepared, 2 ⫽ the patient alone had prepared, 3 ⫽ both the patient and their family had prepared), and degree of physical comfort 3 days before death (0 ⫽ a lot of suffering, 1 ⫽ suffering, 2 ⫽ a little suffering, 3 ⫽ no suffering). Following the death of each patient, a score from 0–15 was recorded to summarize the extent to which it was a good death.19 The opinion of each member was considered and the final score for each patient was decided jointly at the team meeting. The good death scores of 163 patients were collected and analyzed. The assessment of death fear, made jointly by members at the team meeting, had 5 scale scores: 1 ⫽ very little fear, peaceful, and happy; 2 ⫽ little fear but can be managed and no company required; 3 ⫽ fear and company is required but the fear can be managed; 4 ⫽ extreme fear, company required, and fear of sleeping at night; 5 ⫽ insanity and confusion, losing autonomy, and rejecting help from others.21 We collected death fear responses on admission of 173 patients, death fear responses after one week of admission of 100 patients, and death fear responses two days before death of 122 patients.
Statistical Analysis All data were analyzed using SPSS 10.0 statistical software. Frequency, mean, and standard
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deviation were used to describe the demographic data. Mean and standard deviations were used to analyze the “death fear” and the “good death” variable. Pearson correlations were used to analyze the correlations between the “death fear” variable and the “good death” variable. We used t-tests to compare the differences of all variables between two age groups; and paired t-test was used to compare the differences of “death fear” between three time points within each age group. A P value less than 0.05 was considered statistically significant.
Results The subjects of this study included 224 hospitalized patients with terminal cancers: 129 men and 95 women. The mean (SD) age was 62.13 (⫾15.47) years. With regard to the primary cancer origins in the subject group, lung cancer patients was the largest group (21.0%), followed by liver cancer patients (17.4%), and head and neck cancer patients (11.6%). The mean (SD) duration of hospitalization of the subject group was 12.62 (⫾10.09) days. The mean (SD) survival time of the subject group was 17.01 (⫾21.94) days (Table 1). The mean (SD) age of the men was 63.80 (⫾15.50) years, whereas the mean (SD) age of the women was 59.85 (⫾15.21) years. There was no statistical difference in age between male and female groups (Table 2). There were 114 subjects in the non-elderly (young) group (⬍65 years old), of whom 62 Table 1 Demographic Data of the 224 Terminal Cancer Patients Variable
Mean (SD)
n (%)
Age (year) 62.13 ⫾ 15.47 Sex Male 129 (57.6) Female 95 (42.4) Primary site of cancer Liver 39 (17.4) Lung 47 (21.0) Head and neck 26 (11.6) Stomach 19 (8.5) Brain 3 (1.3) Cervix and ovary 13 (5.8) Breast 12 (5.4) Leukemia and lymphoma 3 (1.3) Unknown 5 (2.2) Others 57 (25.4) Duration of admission (days) 12.62 ⫾ 10.09 Survival time (days) 17.01 ⫾ 21.94
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Table 2 Frequency and Descriptive Statistics of Age and Sex in Two Age Groups
Male Female Total
Total Mean ⫾ SD
Age ⬍ 65 n (%)
Age ⱖ 65 n (%)
63.80 ⫾ 15.50 59.85 ⫾ 15.21 62.13 ⫾ 15.47
62 (54.4) 52 (45.6) 114 (100.0)
67 (60.9) 43 (39.1) 110 (100.0)
were men (54.4%) and 52 were women (45.6%); of the 110 patients in the elderly group (ⱖ 65 years old), 67 were men (60.9%) and 43 were women (39.1%) (Table 2). The mean (SD) duration of hospitalization for the non-elderly group (14.18 [⫾12.08] days) was significantly longer than that of the elderly group (11.00 [⫾8.85] days) (P ⬍ 0.05). However, the survival time did not show any statistical difference between the two age groups (Table 3). With regard to the fear of death, the death fear score of the elderly group was significantly higher then the non-elderly group at the time of “two days before death.” However, there was no significant difference between age groups at the other two time points, that is, “on admission” and “a week after admission” (Table 4). Concerning the within-group differences among time periods on death fear, the death fear score at “on admission” was significantly higher than that at “a week after admission;” and the death fear score at “a week after admission” was significantly higher then that at “two days before death” in both groups (Table 5). In brief, the levels of death fear decreased gradually after admission in both age groups. Regarding the good death scale, there was no significant difference between the non-elderly and the elderly group in either average score of individual items or the sum of all items on assessment (Table 6). However, with regard to the correlation between “death fear” and “good death” in the non-elderly group, there was a significant negative correlation between the death fear score at “a week after admission” and
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the “Acceptance” subscale of the good death scale (P ⬍ 0.05). There were also significant negative correlations between the death fear score at “two days before death” and the “Awareness” subscale (P ⬍ 0.01), “Acceptance” subscale (P ⬍ 0.01), “Timeliness” subscale(P ⬍ 0.05), and the total score (P ⬍ 0.01) of the good death scale (Table 7). In the elderly group, there were significant negative correlations between the death fear score at “two days before death” and the “Propriety” subscale (P ⬍ 0.05), “Timeliness” subscale (P ⬍ 0.05), “Comfort” subscale (P ⬍ 0.01), and the total score (P ⬍ 0.05) of the good death scale (Table 8).
Discussion As cancer has been the leading cause of death worldwide for more than a decade, palliative care is very important for terminal cancer patients. Over 50% of terminally ill cancer patients in Taiwan are elderly. In general, elderly patients’ physical/mental conditions often compromise their state of autonomy, which may also interfere with the achievement of their good death. Consequently, this study was designed to investigate differences in the degree of death fear between the young and elderly groups with terminal cancers, and the relationship between death fear and good death. In this sample of 224 patients, the analyses suggested the following: First, the elderly group displayed a higher degree of death fear as compared to the young group at two days before death. Second, the level of death fear, irrespective of age, decreased under the comprehensive care in a palliative setting. Third, patients with a lower death fear level scored higher on the good death scale in both age groups, especially at two days before death. These findings suggest that reducing death fear represents an important factor toward a good death.
Table 3 Duration of Admission and Survival Time in Two Age Groups Age ⬍ 65
Duration of admission (days) Survival time (days) P ⬍ 0.05.
a
Age ⱖ 65
n
Mean ⫾ SD
n
Mean ⫾ SD
t
114 91
14.18 ⫾ 12.08 19.63 ⫾ 25.73
110 87
11.00 ⫾ 8.85 14.26 ⫾ 16.83
2.25a 1.65
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Table 4 Scores of Death Fear in Two Age Groups at Three Time Points During Admission Severity of Death Fear Age ⬍ 65 Time Point On admission 1 week after admission 2 days before death
Age ⱖ 65
n
Mean ⫾ SD
n
Mean ⫾ SD
t
91 55 65
3.59 ⫾ 0.65 2.20 ⫾ 0.80 1.88 ⫾ 0.70
83 45 57
3.49 ⫾ 0.63 2.31 ⫾ 0.60 2.23 ⫾ 0.78
1.02 ⫺0.77 ⫺2.63a
P ⬍ 0.05.
a
Although previous studies indicate that the death fear level of elderly patients is generally lower than that of younger counterparts,25,26 this study showed no significant difference in the death fear level between both age groups on admission and one week after admission. The elderly group’s death fear level tended to be higher than that of younger people at two days before death. Besides differences in the primary origin of cancer, physical conditions also vary between the elderly and the non-elderly groups. Compared to non-elderly patients, elderly people often have multiorgan dysfunction, multiple degenerative diseases, atypical clinical manifestations of diseases, and higher sensitivity to drug side effects. As a result of the cognitive disability, poorer vision, and hearing loss in most elderly people, it is often more difficult to communicate with them.23 Although the average survival period was longer for elderly cancer patients than for the younger patients in a previous study,27 a rapidly deteriorating physical condition after hospitalization and an unstable illness caused elderly people to have fewer days of hospitalization (11 vs. 14.18 days). Perhaps due to elderly patients having fewer days of hospitalization, more consciousness and communication difficulties, and family members’
domination and ignorance of patients’ opinions, elderly patients had less time in contact with clinical Buddhist chaplains (27.36 ⫾ 51.85 vs. 52.24 ⫾ 84.04 min). It may also be true that younger patients are likely to have more significant spiritual distress and death anxiety, and consequently, the medical team provides more care. These factors might explain why elderly patients displayed a higher degree of death fear at two days before death. Thus, one cannot take for granted that the elderly display a higher degree of acceptance of the inevitability of death and less fear in the face of death. In addition to relieving their physical discomforts, clinicians should pay attention to the importance of psychospiritual care for the elderly. It is necessary to keep in close communication with their families, respect their autonomy, and promote their spirituality. Hospice care is intended to decrease patients’ death fear levels and to work towards the goal of a good death through comprehensive care, which includes physical, psychological, social, and spiritual cares. In addition to other professional specialists, clinical Buddhist chaplains play an important role in the process by providing spiritual guidance to patients and family members in the face of death. This can alleviate patients’ physical and psychological
Table 5 Paired Sample t-test on “Severity of Death Fear” At Three Time Points During Admission Group
Time Point 1
Time Point 2
Paired Difference Mean
t
Age ⬍ 65
On admission 1 week after admission On admission
1 week after admission 2 days before death 2 days before death
1.38 0.41 1.72
7.73a 3.00b 12.67a
Age ⱖ 65
On admission 1 week after admission On admission
1 week after admission 2 days before death 2 days before death
1.27 0.26 1.28
7.76a 2.28c 7.74a
P ⬍ 0.001. P ⬍ 0.01. c P ⬍ 0.05. a b
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Table 6 Scores of Good Death in Two Age Groups Age ⬍ 65 n Awareness Acceptance Propriety Timeliness Comfort Total score
87 87 87 87 87 87
Age ⱖ 65
Mean ⫾ SD
n
⫾ ⫾ ⫾ ⫾ ⫾ ⫾
76 76 76 76 76 76
2.75 2.61 2.77 2.75 2.56 13.44
0.53 0.64 0.66 0.69 0.56 2.37
Mean ⫾ SD
t
⫾ ⫾ ⫾ ⫾ ⫾ ⫾
1.31 0.17 1.73 0.81 ⫺0.64 1.03
2.63 2.59 2.57 2.66 2.62 13.05
0.59 0.66 0.82 0.72 0.54 2.41
Awareness ⫽ aware that one is dying; Acceptance ⫽ accepting death peacefully; Propriety ⫽ arranging one’s will properly; Timeliness ⫽ death timing; Comfort ⫽ degree of physical comfort.
suffering, and decrease the death fear level. In our hospice ward, clinical Buddhist chaplains have provided extensive assistance in the areas of religious and cultural consultations, which helps patients towards a good death.22,28 Our study shows that the death fear levels decreased continuously for patients who entered our hospice ward. That might be related to the active total care in the palliative care unit. Patients with a lower death fear level score higher on the total good death scale in both age groups, especially at two days before death. To decrease the patients’ death fear level may facilitate a good death. If we focus on the individual items of the good death scale, it is interesting that the correlative items are different between the two age groups. Whether a cancer patient knows fully that death is near, whether one can accept peacefully the fact of dying, and whether the patient and family members are ready to accept the patient’s death are important factors associated with a good death in the young group. On the other hand,
whether the patient and family members are ready to accept the patient’s death, whether the patient and family members are satisfied with the arrangement of will, and whether patients are comfortable physically are associated with a good death in the elderly group. Thus, the issues emphasized for a good death differ by age. This may guide clinical practice. Proxy evaluation by the hospice care team was used in this study. According to Steinhauser et al.,24 surrogate observation is better used when direct assessment by the patient is not available, but it is not a very good index of the patient’s subjective feeling. Thus, the results of this study should be interpreted with caution because the data were not directly reported by the patients. As a single item was used to assess death fear in the study, some other aspects of death fear were not assessed. Although we believe that active comprehensive care in a palliative care unit is helpful to decrease death fear and improve the quality of dying, the results of the study could not clarify the effects of the
Table 7 Correlation Between Death Fear and Good Death in the Young Group (Age ⬍ 65) Death Fear
Good Death
On Admission 2 days Before Total Admission 1 week Death Awareness Acceptance Propriety Timeliness Comfort Score Death Fear On admission 1 week after admission 2 days before death Good Death Awareness Acceptance Propriety Timeliness Comfort Total score P ⬍ 0.01. P ⬍ 0.05.
a b
1
⫺0.645a 1
⫺0.271b 0.268 1
0.177 ⫺0.298
0.189 ⫺0.332b
0.190 ⫺0.186
0.110 ⫺0.267
⫺0.066 0.159 0.135 ⫺0.302
⫺0.444a
⫺0.512a
⫺0.275
⫺0.308b
⫺0.273 ⫺0.475a
1
0.666a 1
0.527a 0.671a 1
0.618a 0.651a 0.719a 1
0.131 0.232b 0.321a 0.192 1
0.762a 0.850a 0.863a 0.850a 0.475a 1
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Table 8 Correlation Between Death Fear and Good Death in the Elderly Group (Age ⱖ 65) Death Fear
Good Death
On Admission 2 days Before Total Admission 1 week Death Awareness Acceptance Propriety Timeliness Comfort Score Death Fear On admission 1 week after admission 2 days before death Good Death Awareness Acceptance Propriety Timeliness Comfort Total score
1
⫺0.619a 1
⫺0.509a 0.473a 1
0.056 ⫺0.276
⫺0.117 ⫺0.060
0.013 ⫺0.033
0.045 ⫺0.174
0.113 0.032 ⫺0.089 ⫺0.151
⫺0.100
⫺0.038
⫺0.332b
⫺0.300b
⫺0.433a ⫺0.327b
0.439a 0.557a 1
0.676a 0.405a 0.533a 1
1
0.540a 1
0.055 0.119 0.282b 0.173 1
0.753a 0.740a 0.821a 0.794a 0.426a 1
P ⬍ 0.01. P ⬍ 0.05.
a b
comprehensive care on terminal cancer patients. The goal of our palliative care unit is to provide comprehensive care in light of patients’ physical, psychosocial, and spiritual needs. Under the concerted efforts of the members of the multidisciplinary team, the death fear level in the advanced cancer patients tends to decrease, and lower death fear correlates with higher good death scores. However, elderly people with advanced cancers have more symptoms, unstable conditions, shorter periods of hospitalization, and less contact time with clinical Buddhist chaplains. As a result, medical personnel must pay more attention to these patients’ daily care and psychospiritual needs so that their death fear levels may be decreased. Further studies designed to illustrate the effect of palliative care on good death and death fear of terminal cancer patients are necessary.
Acknowledgments This study was supported by the National Science Council (NSC 91-2314-B-002-224) and the Department of Health (DOH90-TD-1126), Executive Yuan in Taiwan. The authors also thank Dr. C.Y. Wu for her assistance in preparing the manuscript.
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