A Comparison of Death Anxiety and Quality of Life of Patients With Advanced Cancer or AIDS and Their Family Caregivers

Article Outline

• Abstract
• Methods
  • Study Sample
  • Setting, Design, and Data Collection
  • Instruments
  • Statistical Analysis
• Results
• Discussion and Implications
• Conclusion
• References
• Biography
• Copyright

As an existential crisis, death anxiety may create suffering and impact quality of life. Based on a sample of 101 patients (63 patients with AIDS and 38 with advanced cancer) and 79 family caregivers (43 AIDS patients' caregivers and 36 cancer patients' caregivers), this study examined the death anxiety of patients with advanced cancer and patients with AIDS and that of their family caregivers and the relationship of death anxiety and quality of life. The results indicated that AIDS patients expressed greater death anxiety than cancer patients, but death anxiety was not different among family caregivers. Both AIDS and cancer patients experienced greater death anxiety than their caregivers. Greater death anxiety was associated with lower quality of life, particularly in the psychological domain for AIDS patients. There were significant correlations between the death anxiety subscales and the quality of life subscales for family caregivers, especially for AIDS caregivers. Interventions that lessen death anxiety may enhance quality of life as death approaches, particularly for AIDS patients and their family caregivers.

Key words: AIDS, cancer, caregivers, death anxiety, quality of life

Human beings have conscious awareness of their mortality (Langner, 2002), and patients who have life-threatening illnesses are forced to face their mortality (Emanuel, Fairclough, Wolfe, & Emanuel, 2004). The diagnosis of an incurable disease can trigger a profound existential crisis as everyday life and the future are threatened for both patients and their families. As an existential issue, death anxiety stems from the conscious awareness of our own mortality (Solomon, Greenberg, & Pyszczynski, 2000) and may be defined as “negative emotional reactions provoked by the anticipation of a state in which the self does not exist” (Tomer & Eliason, 1996, p. 345).

Some of the earliest theoretical literature regarding death anxiety was published nearly 60 years ago. However, currently there is no consensus about what the concept of death anxiety means (Nyatanga & de Vocht, 2006). The origins of death anxiety have been proposed as fear of annihilation (Klein, 1948), the struggle of the living being against nonbeing (Kierkegaard, 1957), castration and separation anxiety (Freud, 1961), a view of death as bodily mutilation (Walton, 1979), or as a learned or conditioned response of existential origins (Gordon, 1970). Although a distinction can be made that “fear is experienced in reference to specific environmental events or objects, while anxiety is a negative emotional state that lacks a specific object” (Schulz, 1978, p. 2), for practical and empirical purposes, anxiety and fear of death are indistinguishable because they exist on a continuum and are determined by the degree to which the emotion is specific to an event or situation (Hoelter & Hoelter, 1980).

The dimensions of death anxiety have included fear of pain, punishment, loneliness, and loss of control (Feifel, 1959); fears of the event of death, of what happens after death, and fear of ceasing to be (Choron, 1964); as well as fear of the unknown and fear of suffering (Conte, Weiner, & Plutchik, 1982). Collett and Lester (1969) believed that fear of death not only involved one's own fears but fears experienced in relationship to others. They identified four distinct fears: fear of dying of self, fear of death of self, fear of dying of others, and fear of death of others.

According to Maddi (1980), death anxiety arises not only by actual confrontations with death but also from experiences of unwanted endings, limitations of time or energy, or disproved ideals that threaten the meaning of life. As supportive relationships build self-worth and create meaning, a positive philosophy of life or a coherent set of life beliefs develop, which allows for confrontation of death without fear (Kallish, 1981).

A research focus of the National Institutes of Health has been to examine palliative care issues in varying patient populations. Given the program of research of the principal investigator and experience with both patient populations, this study focused on death anxiety and quality of life in patients with advanced cancer and those with AIDS in response to the National Institutes of Health research agenda. These concepts were particularly relevant within the context of palliative care because limited empirical literature exists regarding death anxiety or quality of life in patients with advanced disease. As an early study, Feifel, Freilich, and Hermann (1973) reported that on an unconscious level, patients close to dying were more afraid of death than healthy individuals and that dying patients reported thinking about death more frequently than healthy participants. Cella and Tross (1987), based on a sample of young adult male cancer survivors and a normative comparison group, reported that death anxiety was separate but related to general anxiety, depression, somatic distress, and global psychological distress and was most negatively correlated with time lapsed after diagnosis, indicating a decrease in death anxiety over time. However, the cancer survivors did not have higher death anxiety than the comparison group. In comparing patients with AIDS and healthy individuals, Hayslip, Luhr, and Beyerlein (1992) reported no significant difference in overt fear of death between groups; however, there was a greater covert fear of death for patients with AIDS. Catania, Turner, Choi, and Coates (1992) reported that men without a diagnosis of HIV infection had the lowest levels of death anxiety, whereas HIV-infected and symptomatic men had the highest levels of death anxiety and benefited most from peer and medical supports in reducing their death anxiety.

Using a qualitative methodology, Sand and Strang (2006) examined the emotions, perceptions, and experiences of a sample of advanced cancer patients (N=20), and their family caregivers, who were receiving care in a palliative home care setting. Central to both patients' and family members' perceptions were the profound experiences of existential loneliness and anxiety as they realized that they no longer shared the same future, and the difficulty communicating their fears about death. Altered everyday circumstances changed the patients' and family members' inner feelings of mutual connection, leading to unwanted reminders of existential loneliness and increased fear of death. The investigators concluded that palliative care reduced physical and emotional suffering as feelings regarding death were addressed and existential loneliness and fear of death were reduced.

Quality of life has been described as the impact of sickness and health care on a person's daily activities and sense of well-being, related to an individual's ability to cope (Rummans, Bostwick, Clark, & Matthew, 2000). As death approaches, important dimensions of the quality of life include physical concerns (pain and symptoms) and psychological distress (depression and existential anxiety) (Ferris & Cummings, 1995). With advanced disease and related symptoms, patients fear pain, suffering, loneliness, punishment, and loss of control (Grady, Knebel, & Draper, 2001), all previously identified dimensions of death anxiety. Furthermore, as patients' illnesses progress, the needs of families also intensify, with both patients and families experiencing a significant compromise in the quality of their lives (Sherman, 1998, Sherman et al., 2006). The current study offers significant contributions to palliative care because there have been very few studies regarding death anxiety of patients with advanced disease or studies that have examined the death anxiety of family caregivers. Furthermore, there have been no studies that have compared the death anxiety of patients and their family caregivers or that have examined the relationship of death anxiety and quality of life for patients and caregivers experiencing advanced illness.

Conceptually, death anxiety is closely related to suffering, which has been defined as “a state of severe distress that is induced by the threat or actual loss of the intactness of person” (Cassell, 1991, p. 63). A goal of palliative care is to reduce suffering and promote quality of life for patients experiencing serious, life-threatening illnesses and for their families (National Consensus Project, 2004). Patients with advanced disease are considered a vulnerable population, and there has been concern that discussing death may exacerbate death anxiety (Emanuel et al., 2004). Yet in palliative care, there are often candid conversations with patients and families about their perceptions and concerns related to dying and death with the hope of allaying death anxiety and promoting quality of life even as death approaches.

Given the National Consensus Project's (2004) focus on the patient and family as the unit of care, and with its emphasis on the assessment of psychological and existential issues, the purpose of this study was to (a) establish the reliability and validity of the study's instruments for use with patients and caregivers of varying diseases (cancer and AIDS), (b) compare the death anxiety of patients with advanced cancer and with AIDS, (c) compare the death anxiety of family caregivers of patients with advanced cancer and with AIDS, (d) determine differences in the death anxiety of patients with cancer and with AIDS as compared with their family caregivers, and (e) examine the relationship of death anxiety and quality of life for patients and their family caregivers. This study is of further importance given that the assessment of death anxiety of various patient populations and their family caregivers is a first step in the development of appropriate psychological or existential interventions to allay death anxiety and promote quality of life.

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Methods 

Study Sample 

A total of 101 patients (63 patients with AIDS and 38 with advanced cancer) and 79 family caregivers (43 AIDS patients' caregivers and 36 cancer patients' caregivers) were enrolled in this study. Patients were included in the study if they were 18 years of age or older; diagnosed with advanced cancer or with AIDS by a primary care physician, oncologist, or HIV-care specialist; and currently receiving care as either an inpatient or outpatient. Family caregivers were 18 years of age or older, were identified by patients as significant others who were actively involved in their care, and may or may not have been living in the same household. Furthermore, patients and family caregivers spoke English and were cognitively intact, according to the Short Portable Mental Status Exam (Pfeiffer, 1975).

Setting, Design, and Data Collection 

Patients and family caregivers who met the study's inclusion criteria were recruited from a health care system in New York City, having been referred to the study by oncologists, HIV specialists, or advanced practice nurses who cared for the patients in an HIV clinic or private oncology practices or upon admission to inpatient settings. The results represent cross-sectional data regarding death anxiety and quality of life. If a patient expressed interest in the study, the researcher met with the patient on the inpatient unit or in the outpatient setting or spoke to him or her by telephone. The researcher provided a verbal and/or written description of the study, including the purpose of the study and the elements of informed consent. This study was approved of by the internal review boards of New York University, New York University Medical Center, and Mount Sinai Medical Center.

Instruments 

The Death Anxiety Questionnaire (DAQ) (Conte et al., 1982) provides a brief, reliable, and valid questionnaire for measuring attitudes about dying and death. The DAQ has reported internal reliability as indicated by a split half reliability of .76 and test-retest reliability of .87 based on a sample of 230 college students and older adults. Construct validity was established based on moderate correlation (r=.46, p < .001) with the Manifest Anxiety Scale and a strong correlation (r=.74, p < .001) with the Depression Scale, as well as moderate correlations (r=.51 and r=.58) between DAQ and Templer's Death Anxiety Scale (1971) and Dickstein's Death Concern Scale (1972), respectively. Principal components factor analysis has indicated that death anxiety is a multidimensional construct with five factors, of which four could be meaningfully labeled as fear of the unknown, fear of loneliness at the time of death, fear of suffering, and fear of personal extinction. These factors accounted for 64.3% of the variance in the DAQ. The scoring of the DAQ is based on the total of 15 items, which are rated on a three-point scale ranging from 0 (not at all) to 2 (very much). Higher scores reflect greater death anxiety.

The McGill Quality of Life Questionnaire (MQOL) (Cohen, Mount, & Strobel, 1995) was selected because it is a multidimensional measure of the quality of life of people with all types of life-threatening illnesses, and specifically in palliative care. The MQOL is composed of 17 self-report items with reported reliability and validity based on a sample of HIV-infected outpatients (Cohen, Hassan, Lapoint, & Mount, 1996) and cancer patients (Cohen, Mount, Tomas, & Mount, 1996). Factor analysis has indicated that the MQOL is represented by five measures: a single item measuring physical well-being and four subscales representing physical symptoms, psychological symptoms, existential well-being, and support. The MQOL uses a 1 to 7 numerical rating scale response format. The subscales regarding physical and psychological symptoms were reverse scored. The score for each subscale is the mean of the items in that subscale, whereas the MQOL total score is the mean of the four subscales and the physical well-being item score. For both MQOL subscales and the total score, higher scores represent greater quality of life.

The Quality of Life Scale (Family Version) (QLS) (Ferrell, Grant, Borneman, Juarez, & terVeer, 1999) was selected because of its reliability and validity in measuring quality of life for family members caring for cancer patients. Slight modifications were made in the wording of certain items to make it relevant to AIDS caregivers. For example, the item, “Are you afraid of a second cancer?” was changed to “Are you afraid of a second opportunistic infection?” The reliability of the instrument based on AIDS caregivers was examined in the current study. As a 37-item instrument, the QLS addresses physical well-being (five items), psychological well-being (16 items), social concerns (nine items), and spiritual well-being (seven items). Factor analysis confirmed the four quality of life domains of physical well-being, psychological well-being, social concerns, and spiritual well-being. Participants were asked to indicate their agreement with each statement on a Likert-type scale ranging from 0 to 10. The scoring was based on a scale of 0 (indicating the most positive response) to 10 (indicating the most negative response). However, the authors of this study reverse scored the subscales so that higher scores on the QLS subscales and total score represented greater quality of life.

Statistical Analysis 

The characteristics of patients with AIDS, patients with cancer, and their family caregivers were compared using chi-square test or Fisher exact test for categorical variables and t-test or Wilcoxon rank sum test for continuous variables. The reliability of the instruments was assessed at baseline by determining internal consistency using Cronbach's α. Values of .7 were considered acceptable. Pearson's correlation coefficients between each instrument's subscales were estimated, with a correlation < .39 considered as weak, .4 to .59 as moderate, and > .6 as strong. The total scores for the DAQ, MQOL, and QLS and their subscales were calculated following the investigators' suggestions (Cohen et al., 1995, Conte et al., 1982, Ferrell et al., 1999). Using Pearson's correlation coefficient, the patients' and caregivers' total scores and subscales of the DAQ were correlated with the subscales of the quality of life instruments for patients (MQOL) and family caregivers (QLS). The total scores and subscales of the DAQ were compared between AIDS and cancer patients and family caregivers using Wilcoxon rank sum test. A two-sided p-value of ≤ .05 was considered statistically significant. Data were analyzed using SAS (Statistical Analysis Software) version 9.0.

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Results 

All demographic characteristics of patients with advanced cancer and with AIDS were significantly different with the exception of primary language, with both patient groups speaking predominately English (see Table 1). AIDS patients were younger and had a higher proportion of men, a predominance of minorities, less education, a difference in religion, and more single subjects. Similarly, significant differences were reported for AIDS and cancer family caregivers with regard to age, ethnicity, education, religion, and marital status (refer to Table 1). Cancer caregivers were significantly older; both AIDS and cancer caregivers were predominately female.

Table 1. Patient and Caregiver Demographics

	AIDS Patients	Cancer Patients	p	AIDS Caregivers	Cancer Caregivers	p
Age (mean±SD)	40.6±9.3	59.1±11.8	< .0001	42.4±13.6	56.0±14.8	< .0001
Gender
Male	38	14	.0370	14	14	.639
Female	24	23		29	22
Ethnicity
White	4	32	< .0001	3	33	< .0001
Black/African American	30	1		23	1
Hispanic/Latino	27	2		15	1
Asian	0	1		0	1
Other	2	2		2	0
Education
<High school	24	2	< .0001	13	0	< .0001
High school diploma	34	11		18	12
Bachelor's degree	3	12		9	0
Graduate degree	0	7		2	10
Postgraduate	0	4		1	14
Religion
Protestant	20	4	< .0001	15	3	< .0001
Catholic	24	11		13	13
Jewish	1	18		2	15
Buddhist	0	1		0	0
Muslim	2	0		12	5
Other	12	4		0	0
Primary Language
English	56	34	.0765	38	34	.147
Spanish	7	1		5	1
Chinese	0	1		0	1
French	0	1
Marital Status
Married	11	27	< .0001	8	28	< .0001
Divorced	5	2		7	0
Separated	6	0		6	0
Widowed	6	3		18	4
Single	35	5		4	3

The Cronbach's alpha for the DAQ based on both the AIDS and cancer patient groups indicated a coefficient of .83 for the total scale and coefficients of .79 for the fear of loneliness subscale, .61 for the fear of extinction subscale, .67 for the fear of suffering subscale, and .69 for the fear of the unknown subscale (see Table 2). The alpha coefficients of the subscales were relatively close to the acceptable value of .70. In separate analyses based on AIDS and cancer patients, the Cronbach's alphas on the total scale and subscales (see Table 2) were acceptable for both patient groups; however, the fear of extinction subscale dropped to .37 for AIDS patients. This low alpha coefficient was largely because of Item 10: “Do you worry that your instructions may not be carried out?” When this item was removed, the alpha coefficient of the subscale increased to .70. Based on correlations with all patients as well as correlations based on AIDS patients, significant positive moderate correlations ranged from .28 to .53 among the subscales of the DAQ, with fewer significant correlations between the DAQ subscales based on cancer patients (see Table 2).

Table 2. All Cancer and AIDS Patient Correlations Between Death Anxiety Questionnaire and Quality of Life Scales

NOTE: DAQ=Death Anxiety Questionnaire, QOL=quality of life.

The Cronbach's alpha coefficients for the total DAQ scale and subscales for family caregivers are indicated in Table 3, indicating acceptable coefficients with the exception of the fear of extinction subscale, which showed coefficients ranging from .46 for all caregivers, .38 based on AIDS caregivers, and .46 based on cancer caregivers. For AIDS caregivers, the fear of extinction subscale had a low Cronbach's alpha coefficient because of item 11: “Are you afraid of being buried before you are really dead?” whereas for cancer caregivers, deleting item 10: “Do you worry that your instructions will not be carried out?” raised the alpha coefficient to .62. Based on correlations for all family caregivers and separately for AIDS caregivers, there were significant moderate-to-strong positive correlations among the subscales of the DAQ. However, for cancer caregivers, there were fewer significant subscale correlations (see Table 3).

Table 3. All Cancer and AIDS Caregiver Correlations Between Death Anxiety Questionnaire and Quality of Life Scales

NOTE: DAQ=Death Anxiety Questionnaire, QOL=quality of life.

Based on this study, factor analysis of the DAQ was consistent with the four factors identified by Conte et al. (1982). These factors were fear of the unknown, fear of loneliness, fear of suffering, and fear of extinction.

The Cronbach's α for the total scores on the quality of life instruments for AIDS and cancer patients and caregivers were acceptable. The alpha coefficient of the MQOL was .76 for AIDS patients and .73 for cancer patients. The alpha coefficient for the QLS was .87 and .89 for AIDS and cancer caregivers, respectively. Pearson product-moment correlations between the subscales of the MQOL for patients indicated that for AIDS patients, the correlations between the subscales of MQOL were generally weak with the range of coefficients between .07 and .35, and that only psychological symptoms and support were significantly correlated to the existential well-being subscale (r=.3, p ≤ .015, r=.35, p=.005, respectively). For cancer patients, the correlations between the MQOL subscales ranged from -.07 to .49, with only physical well-being and psychological symptoms significantly correlated with existential well-being (r=.34, p=.04, r=.49, p=.05, respectively). In contrast, the correlations between the subscales of QLS based on all family caregivers were mostly moderate and strong. For example, physical, psychological, and social well-being were significantly correlated with coefficients larger or equal to .4 (p ≤.005).

Based on Wilcoxon rank sum test, Table 4 indicates higher death anxiety scores for AIDS patients than for cancer patients on the total DAQ score (p=.007), with trends regarding higher fear of loneliness and fear of suffering (p=.067 and p=.64, respectively), for AIDS patients. Table 5 indicates no significant differences in death anxiety among AIDS and cancer caregivers, with the exception of the fear of extinction (p=.013), in which AIDS caregivers had higher scores. However, given the low Cronbach's alphas of the fear of extinction subscale, this result may not be reliable.

Table 4. Comparison of AIDS and Cancer Patients' Death Anxiety

NOTE: IQR=interquartile range.

Table 5. Comparison of AIDS and Cancer Caregivers' Death Anxiety

NOTE: IQR=interquartile range.

Patients' and family caregivers' death anxiety were also compared. Table 6 indicates no significant correlations between the total group of patients and caregivers on the total score or subscales of the DAQ or when patients and caregivers were analyzed separately. Comparisons of death anxiety scores for patient groups and their family caregivers were also analyzed using paired sample correlations on the Wilcoxon rank sum test. Table 7 indicates significant differences in fear of the unknown, fear of suffering, fear of extinction, and total death anxiety for both AIDS and cancer patients and their family caregivers, with both patient groups reporting higher scores than their family caregivers. However, there were no significant differences between AIDS and cancer patients and their family caregivers on the fear of loneliness subscale.

Table 6. Correlations of All Patients (AIDS and Cancer) and their Family Caregivers on the Death Anxiety Questionnaire

Table 7. Comparison of All Patients and Their Family Caregivers on Death Anxiety: Wilcoxon Rank Sum Test

NOTE: IQR=interquartile range.

The relationship between death anxiety and quality of life was also examined. When AIDS patients and cancer patients were examined as one group, there was a significant moderate negative correlation between total death anxiety score and the total quality of life score (r=−.45, p <.001; see Table 2), indicating that the higher the death anxiety, the lower the quality of life.

When patient groups were analyzed separately, there was a significant moderate negative correlation between the total death anxiety score and the total quality of life score for AIDS patients (r=−.53, p < .001), whereas there was no significant relationship for cancer patients (see Table 2). Based on the total patient group, there were significant negative correlations of the DAQ subscales with the total quality of life score (see Table 2); however, significant correlations did not hold for all of the subscales of quality of life. The subscales of fear of loneliness, fear of extinction, fear of suffering, and fear of the unknown were not significantly correlated with the physical or support domains of quality of life. However, significant negative correlations were reported between the DAQ subscales and the psychological domain of quality of life (see Table 2).

Based on the total sample of family caregivers, a significant negative correlation was reported between the total DAQ score and the total quality of life score (r=−.43, p < .001), as well as each of the quality of life subscales. For the total family caregiver group, there were several significant negative correlations between the subscales of the DAQ and all of the subscales of quality of life for family caregivers (see Table 3), with the exception of the fear of extinction subscale of the DAQ. When the caregiver groups were analyzed separately, many of these correlations were upheld for the AIDS caregiver group, but there were many fewer significant correlations for the cancer caregiver group, again possibly because of the small sample size (see Table 3). The results, therefore, indicate that death anxiety is more highly correlated with quality of life for AIDS family caregivers than for cancer caregivers.

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Discussion and Implications 

This study examined death anxiety and quality of life for patients with advanced cancer and those with AIDS and their family caregivers. Because the patient and family are the unit of care in palliative care (National Consensus Project, 2004), it is important to identify the needs and concerns of family caregivers, particularly in relation to the experience of the patient. With limited research regarding death anxiety in patients with advanced disease, this study has contributed to palliative care's body of knowledge.

The results of this study support the multidimensionality of the DAQ with similar factor loading as identified by Conte et al. (1982). This study also supported the reliability of the DAQ for both patient and family caregiver populations, with the exception of the fear of extinction subscale for patients with AIDS and their caregivers. The question, “Do you worry that your instructions may not be carried out?” lowered the alpha coefficient for the fear of extinction subscale for AIDS patients, whereas the question, “Are you afraid of being buried before you are really dead?” lowered the alpha coefficient for AIDS caregivers. One may consider the meaning of these statements related to fear of extinction from the perspective of AIDS patients and caregivers. Given stigmatization related to AIDS and the related social issues, patients may feel less control over many aspects of the illness experience and have concern that their wishes and preferences may not be considered. Covert social issues may have been triggered by questions related to fear of extinction even from the perspective of family caregivers, with beliefs that patients with AIDS are being socially buried before they are really dead. Insights into the response of AIDS patients and family caregivers to the fear of extinction subscale would only be possible through a discussion of their perceptions of these items during interviews.

This study also showed the reliability of the MQOLS based on patients with advanced cancer and with AIDS. The previously documented reliability of the QLS was supported for cancer caregivers and was established in this study for AIDS caregivers based on the modified QLS. The MQOLS can, therefore, be administered to both AIDS and cancer patient populations; the QLS can be used for both caregiver populations.

The review of literature indicated that there were no studies that compared the death anxiety of patients with advanced cancer and AIDS. The results of this study showed that the total death anxiety was higher for patients with AIDS than for cancer patients. Differences in the demographic characteristics of AIDS patients and cancer patients, not merely the disease states, may have contributed to differences in death anxiety. For example, AIDS patients were younger than cancer patients, and the literature has indicated that older people are less afraid of death than their younger counterparts (Thorson and Powell, 2000, Tomer et al., 2000). Given the higher death anxiety of AIDS patients, it is possible that with the relatively recent history of the HIV epidemic over the last 23 years and the high mortality rate before the development of combination antiretroviral therapy that there remains a lingering fear of HIV as a death sentence, reflected as a sustained fear of extinction for HIV-infected patients. In that there were only trends related to differences between AIDS patients and cancer patients in terms of fear of loneliness and fear of suffering, perhaps this is an indication that various patient populations experience these dimensions of death anxiety with advanced illness. When Hayslip et al. (1992) compared the death anxiety of patients with AIDS with that of healthy individuals, there was no significant difference in death anxiety on a conscious level but greater covert fear of death. In a review of solicited diaries of AIDS patients, Thomas (2006) contextualized the pressures of long-term illness for AIDS patients as feelings of dependency, isolation, and rejection, which fueled uncertainty about the time of remaining life and issues related to death and maintaining quality of life. From a research perspective, a future qualitative study would be of value in understanding the perceptions of patients with AIDS as it related to their fears associated with dying or death. This knowledge could inform an intervention study in which targeted interventions were tested to allay death anxiety. From a clinical perspective, this study reinforces the value of a palliative care consult in which interdisciplinary team members assess a patient's level of death anxiety and offer support and counseling to reduce existential distress including loneliness and emotional or spiritual suffering.

The lower death anxiety of cancer patients, when compared with that of healthy subjects or those with chronic conditions, has been supported in several studies (Cella and Tross, 1987, Dougherty et al., 1986, Gibbs and Achterberg-Lawlis, 1978). Because the level of death anxiety is lower for patients with advanced cancer than either healthy individuals or those with other conditions, it is possible that eventually at some point cancer patients come to an acceptance of death or lower death anxiety. This study leads to an appreciation of variations of clinical needs for different patient populations and knowledge that interventions may need to be individualized based on patient populations because one size does not fit all.

With regard to differences in levels of death anxiety for family caregivers of AIDS-patient and cancer-patient populations, this study has shown no significant differences in death anxiety with the exception of the fear of extinction subscale, with AIDS caregivers reporting higher scores. The reason for greater fear of extinction, as discussed previously for patients with AIDS, may also be experienced by AIDS caregivers. Given that the majority of caregivers for both AIDS patients and cancer patients were women, they may have experienced similar levels of death anxiety based on gender. Yet based on the demographic characteristic of age, AIDS caregivers were significantly younger than cancer caregivers, and younger individuals have been shown to have greater death anxiety (Thorson & Powell, 2000). Further investigation of the relationship of caregiver characteristics and death anxiety is warranted, therefore, so that appropriate supportive interventions for caregivers may be provided.

This study provided information regarding the relationship of death anxiety to patients and their family caregivers. Pearson's correlation results indicated no significant correlations between patients and caregivers on the total score or subscales of the DAQ, with the exception of a significant positive correlation for the fear of the unknown subscale. This result has clinical implications in that fear of the unknown may be alleviated when patients and caregivers are told what to expect. Patients and caregivers may ask about the progression of disease and what symptoms and changes may be experienced. Palliative care practitioners can assist in having difficult conversations regarding issues related to advancing illness, providing knowledge regarding the physical and emotional changes experienced during the dying process, and reassurance that symptoms will be effectively controlled and supportive presence given.

Based on the Wilcoxon rank sum test, comparisons of death anxiety scores for patient groups and their family caregivers indicated significantly greater fear of the unknown, fear of suffering, fear of extinction, and total death anxiety for both AIDS and cancer patients. There were no significant differences between patients and their family caregivers on the fear of loneliness subscale. Given that the patients were directly experiencing the illness, dying, and death, it was not unexpected that they had higher death anxiety than their family caregivers. However, this contrasts with the idea of reciprocal suffering of patients with advanced illness in which the health or suffering of patients is related to the health or suffering of family caregivers (Sherman, 1998). It further contrasts with a tenet of palliative care that recognizes the burden and distress of family caregivers when caring for individuals with life-threatening serious illness (National Consensus Project, 2004). Hinton (1999) assessed awareness and acceptance of dying using weekly semistructured interviews and subjective ratings of mood and anxiety based on a sample of 76 patients with advanced cancer and their family caregivers. Patients were more anxious than caregivers, yet patient and caregiver acceptance of death, which may be viewed as the inverse of death anxiety, was positively correlated. Sand and Strang (2006) examined the experience of 20 advanced cancer patients and their family caregivers and reported a profound experience of existential loneliness and death anxiety associated with changes and circumstances during the disease trajectory for both patients and their family caregivers.

Collett and Lester (1969) proposed that death anxiety involved four distinct fears: fear of dying of self, fear of death of self, fear of dying of others, and fear of death of others. Hui and Fung (2009) suggested that regardless of culture, individuals are anxious about the death and dying of those who are close to them, sometimes even more than they worry about their own dying and death. Given the results of the current study, it would be of value to further examine the level of death anxiety related to death and dying of self as compared with death and dying of others for patients with AIDS and patients with cancer and their caregivers. In palliative care, it is not unusual for patients to express their concerns related to dying and death, not in relation to their own lives but with concern for the well-being of their families.

Last, this study examined the relationship between death anxiety and quality of life for patients with advanced cancer and patients with AIDS and their family caregivers. Based on both patient groups, analyses indicated significant negative correlations between all of the subscales of the DAQ and the total quality of life score: the greater the fear of loneliness, extinction, suffering, and the unknown, the lower the person's quality of life. This supports the importance of addressing suffering and feelings of loneliness in palliative care, as well as spiritual and existential issues related to death and the afterlife (Matzo and Sherman, 2006, National Consensus Project, 2004). It also speaks to the importance of an active presence in allaying death anxiety and promoting quality of life. When AIDS and cancer patient groups were analyzed separately, the physical and support domains of quality of life were not significantly related to the DAQ subscales, whereas they were negatively correlated with the psychological domains of quality of life, particularly for AIDS patients but with far fewer significant correlations for cancer patients. Although this may be because of the smaller sample size of the cancer group, it is unclear why death anxiety was not related to physical well-being or support, given that the dimensions of death anxiety include pain and suffering (Feifel, 1959). It is possible that for patients with low physical well-being and lack of support, there may be a desire for hastened death (O'Mahony et al., 2005, Rosenfeld et al., 2006) rather than a fear of death. The results of Cella and Tross (1987) and Conte et al. (1982) indicated that death anxiety was related to general anxiety, depression, and global psychological distress, which supports the relationship reported in this study between death anxiety and the psychological domain of quality of life.

Based on the total sample of family caregivers, significant negative correlations were reported between the physical, psychological, social, and spiritual quality of life subscales and all of the dimensions of death anxiety, with the exception of the fear of extinction. This supports the belief that fears of loneliness, suffering, and the unknown, as dimensions of death anxiety, were related to the various aspects of quality of life for family caregivers. It was unclear why there were significant relationships between the subscales of death anxiety and the physical and support dimensions of quality of life for caregivers whereas these dimensions were not related in patients with life-threatening illnesses. Perhaps caregivers focus more on the physical issues such as the relief of pain and suffering and experience feelings of helplessness in relieving a patient's distress (Sherman, 1998), which influences all four dimensions of quality of life.

In exploring the relationships between death anxiety and quality of life separately for the two caregiver populations, similar results were reported for the AIDS caregiver group when compared with the total caregiver group. Thomas's (2006) study showed, through insights provided by diaries, the intense physical and psychological impact of caring for family caregivers of patients with HIV. Specifically, it was reported that when the patients' health was declining, AIDS caregivers suffered from the physical strains of caring and the emotional consequences of their inability to provide adequately for the patient and failure to see improvement. In contrast, for cancer caregivers, despite a significant negative correlation between total death anxiety score and total quality of life score, only fear of the unknown was significantly negatively correlated with physical, psychological, and social quality of life, but not with the spiritual domain. Studies that have examined the loss and bereavement related to caregiver experiences of patients with HIV have showed issues of identifying with the dying partner, seeking support from friends and family, needing to live fully in the present to overcome fears of death, and finding approaches to dealing with impending death (Brown and Powell-Cope, 1993, Ferrell and Boyle, 1992, Stajduhar, 1997). The results of the current study indicate the relationship between death anxiety and quality of life exists more strongly for AIDS patients and their caregivers than for cancer patients and their caregivers.

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Conclusion 

Penson et al. (2005) purport that dying is an experience that can only be imagined, thereby fueling the fear of death. Based on 224 patients with various terminal illnesses, the level of death anxiety, irrespective of age, decreased when patients received palliative care, and patients with a lower fear of death scored higher on a good death scale. Research regarding death anxiety requires a complex understanding of the nature of the human experience (Craib, 2003). Further research is warranted to understand the different perceptions and concerns of patients with various life-threatening diseases and to recognize the factors that influence quality of life for patients and their family caregivers. Health professionals who work with dying patients and their families need to understand how to help people cope with unacceptable physical and psychological threats (Zimmermann, 2004). Recognition of the death anxiety of patients and family caregivers and its relation to quality of life is important in providing palliative care that addresses the holistic needs of patients and families as they face death (Emanuel et al., 2004). Results of this study indicate that the dying experience as it relates to death anxiety and quality of life is different for AIDS patients and cancer patients, more similar among AIDS caregivers and cancer caregivers, and also different between patients and their caregivers. Therefore, individualized care is important for patients with advanced cancer and AIDS and their family members to promote quality of life when faced with a life-threatening illness.

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