Social determinants of death anxiety in patients with advanced cancer receiving outpatient palliative care

Abstract

Background:

Death anxiety is common in advanced cancer, but little is known about risk factors for its occurrence, frequency or severity in those receiving specialized palliative care.

Aim:

This study aimed to determine the prevalence and correlates of death anxiety in outpatients with advanced cancer receiving specialized palliative care.

Design:

Cross-sectional observational study.

Setting/Participants:

We identified the prevalence of death anxiety in 203 patients with advanced cancer attending an outpatient palliative care clinic in a large tertiary care hospital, and examined its association with sociodemographic factors, time since advanced cancer diagnosis, time since initial palliative care consultation, and proximity to death. Death anxiety was measured using the Death and Dying Distress Scale (DADDS). Variables that demonstrated significant univariable associations were subsequently included in a multivariable regression analysis.

Results:

Moderate to severe death anxiety (DADDS score ⩾ 25) was reported by 46.3% of participants. Multivariable analysis demonstrated that greater death anxiety was associated with lower household income (⩾$100,000+ vs <$30,000: ß = −0.30, p = 0.002; $60,000–$99,999 vs <$30,000: ß = −0.27, p = 0.004; $30,000–$59,999 vs <$30,000: ß = −0.31, p < 0.001) and living alone (ß = 0.16, p = 0.03), but not with time since advanced cancer diagnosis or initial palliative care consultation, or with proximity to death.

Conclusions:

Moderate to severe death anxiety is reported by almost half of patients with advanced cancer receiving outpatient palliative care and is associated with economic disadvantage and solitary living arrangements. Further research is needed to determine to what extent targeted psychosocial and palliative interventions can alleviate such distress in this population.

What is already known about the topic?

• Moderate to severe death anxiety is common in patients with advanced cancer and has been reported by 32% to 48% of this population.

• Little is known about individual correlates for the occurrence, frequency and severity of death anxiety in those receiving specialized palliative care.

What does this paper add?

• Moderate to severe death anxiety is reported by almost half of patients with advanced cancer who were receiving specialized outpatient palliative care.

• Death anxiety in this context is associated with social isolation and economic disadvantage, but not with duration of advanced disease, duration of palliative care, or proximity to death.

Implications for practice, theory or policy?

• Further research is needed to determine whether and to what extent death anxiety can be alleviated by psychosocial and palliative care interventions.

Introduction

An increasing number of individuals are living with advanced cancer, ¹ and many experience substantial psychological distress. ² One manifestation of psychological distress is death anxiety, which is defined as emotional distress arising from the perceived threat of impending mortality and from the dying process.^2,3 Moderate to severe death anxiety has been reported in 32%–48% of patients with advanced cancer.^2,4

Death anxiety observed in healthy or psychiatric populations may not fully reflect the nature of death anxiety experienced by individuals who are confronting a genuine risk of death. ⁵ Therefore, our team developed the Death and Dying Distress Scale (DADDS) to assess death anxiety in individuals with advanced cancer and subsequently validated it in this population. ³

Previous research studies in advanced cancer have shown that depression, anxiety, and manifestations of physical distress are common correlates of death anxiety. ⁶ However, growing evidence indicates that sociodemographic factors may play a major role in shaping psychosocial outcomes in the general and advanced cancer patient populations. ⁷ Among patients with advanced cancer, death anxiety is more common among women and younger patients. ² This may be due to gender differences in emotional expression, ⁸ and the greater impact of an unexpected serious illness (e.g. terminal illnesses, cancer) in younger individuals. ⁹ Other sociodemographic factors, such as lower annual income, have also been associated with significantly higher levels of death anxiety. ² However, there is no consistent relationship found between religious affiliation and death anxiety and a higher education level is associated with higher levels of death anxiety. ¹⁰ Finally, although there is limited literature reporting on the relationship between ethnicity and language with death anxiety, immigrants are more likely to have a poor perceived quality of dying. ¹¹

This study aimed to examine the prevalence and sociodemographic correlates of death anxiety in advanced cancer patients receiving specialized outpatient palliative care, and the relationship of this symptom to the duration of disease, duration of specialized palliative care involvement, and proximity to death. Such findings could shed light on the determinants of death anxiety in this population and inform potential therapeutic interventions.

Methods

Data were collected in a cross-sectional observational study in a specialized outpatient palliative care clinic at a comprehensive tertiary care cancer center in Canada, ¹² between March 2020 and October 2023 (Ethics approval: February 5, 2020; REB number: 19-5952.1). Some periods of recruitment were interrupted by intermittent restrictions on research activities at our institution caused by the COVID-19 pandemic. ¹³ Adult patients with Stage III or IV cancer, who demonstrated English fluency, were recruited as part of a separate validation study. ¹³ The outcome, death anxiety, was assessed using the Death and Dying Distress Scale (DADDS) total score. ³ The DADDS has been validated for use with patients with advanced cancer, ³ with higher scores indicating greater levels of death-related distress. Missing data were handled using listwise deletion. A multicollinearity check (using the variance inflation factor (VIF)) was conducted to identify and exclude predictor variables with severe correlations (VIF > 5). Univariable regressions were conducted to assess the association of sociodemographic (e.g. household income, living arrangement) and medical factors (e.g. duration of advanced cancer) with death anxiety. Variables that demonstrated significant univariable associations were subsequently included in a multivariable regression analysis. Detailed methodological information is provided in Supplement 1.

Results

Sociodemographic characteristics and prevalence of death anxiety

Two hundred and three patients completed sociodemographic and study measures. Characteristics of these patients with advanced cancer who were receiving outpatient palliative care are detailed in Table 1.

Table 1.

Sample characteristics of patients with advanced cancer receiving outpatient palliative care in a tertiary care hospital (N = 203).

Variable	n	%	Mean (SD), Range
Age at consent (years)			61.6 (11.9), 27–91
Gender
Female	108	53.2%
Male	95	46.8%
Cancer type
Brain	4	2.0%
Breast	28	13.8%
Endocrine	3	1.5%
Gastrointestinal	35	17.2%
Genitourinary	32	15.8%
Gynecologic	25	12.3%
Head/neck	20	9.9%
Hematologic	7	3.5%
Lung	36	17.7%
Melanoma	8	3.9%
Sarcoma	2	1.5%
Other a	3	1.0%
Ethnicity
White	137	70.6%
Non-White	57	29.4%
Missing b	9
Country of birth
Canada	104	53.3%
Other countries	91	46.7%
Missing	8
Primary language
English only	155	78.3%
Other languages	43	21.7%
Missing	5
Religion
Engaged in religion	122	62.6%
Not engaged in religion c	73	37.4%
Missing	8
Education
High school or less	40	20.5%
College/Trade	34	17.4%
Undergraduate	52	26.7%
Post-graduate/professional school	69	35.4%
Missing	8
Employment
Currently working	40	20.6%
Unemployed d	154	79.4%
Missing	9
Combined household income (CAD)
<$30,000	31	20.5%
$30,000 to $59,999	37	24.5%
$60,000 to $99,999	37	24.5%
⩾$100,000	46	30.5%
Did not wish to respond or missing	52
Current living arrangement
Living with someone	153	78.5%
Living alone	42	21.5%
Missing	8
Psychosocial oncology referral
Yes	117	66.9%
No	58	33.1%
Missing	28
Months since advanced cancer diagnosis			48.1 (49.9), 2–249
Months of palliative care receipt(Missing n = 8)			16.9 (18.0), 1–93
Deceased (at time of final analyzes)
Yes	96	47.3%
No	107	52.7%
Proximity to death (days) e			375.6 (292.4), 30–1325
DADDS (continuous score) (Missing n = 2)			23.3 (15.7), 0–70
DADDS (categorical score)
None to mild death anxiety (<25)	114	56.7%
Moderate death anxiety (25–46)	74	36.8%
Severe death anxiety (>46)	13	6.5%
Missing	2

DADDS: Death and Dying Distress Scale; SD: Standard Deviation; CAD: Canadian dollars.

a

Other cancers included desmoid tumor, Merkel cell carcinoma, and ophthalmologic choroid cancer.

b

Counts are presented for missing data for each variable; these were excluded from the denominator used to calculate the proportions that are reported.

c

Not engaged in religion included those who identified as agnostic, atheist, none/no religion, and/or non-specific.

d

Unemployed individuals included those who were unemployed due to illness or for other reasons, as well as those who identified as retirees, homemakers, students, and others (i.e. none of the above or not applicable responses to the employment question).

e

Proximity to death was calculated as the number of days between the date of study consent and the date of death (partial date values were imputed as described in the Statistical Analyses section).

Multivariable correlates of the DADDS

Univariable correlates of the DADDS are provided in Supplement 2. The final multivariable linear regression model showed that the overall relationship between the predictors and the outcome was statistically significant (F = 3.96, p < 0.001; Table 2). Those who lived alone scored significantly higher on the DADDS than those who lived with someone (ß = 0.16, p = 0.03). Those with household incomes of $30,000 to $59,999 (ß = −0.31, p < 0.001), $60,000 to $99,999 (ß = −0.27, p = 0.004), and ⩾$100,000 (ß = −0.30, p = 0.002) all scored lower on the DADDS than those with a lower household income of <$30,000. Overall, 10.9% of the variance in the DADDS was explained by living alone and higher family income.

Table 2.

Multivariable correlates of the DADDS.

Predictor	Unstandardized coefficients B (SE)	Standardized coefficients ß	t-value	p-value
Intercept (ßo)	30.77 (2.99)	-	10.29	<0.001
Living alone a	6.08 (2.74)	0.16	2.22	0.03
Combined household income b
$30,000 to $59,999	−12.41(3.72)	−0.31	−3.34	<0.001
$60,000 to $99,999	−10.81 (3.77)	−0.27	−2.87	0.004
⩾$100,000	−11.22 (3.64)	−0.30	−3.09	0.002

a

Reference group is “Living with someone”

b

Reference group is <$30,000 CAD.

Discussion

Main findings

Among patients with advanced cancer receiving specialized outpatient palliative care, 46.3% reported moderate to severe death anxiety, with 36.8% reporting moderate levels and 6.5% reporting severe levels. In the multivariable regression model, low household income and solitary living arrangements were significantly associated with higher levels of death anxiety, but not for the association between gender and death anxiety.

What this study adds

The prevalence of death anxiety in this study aligns with previous research conducted with patients with advanced cancer, which reported rates of 32%–48%.^2,4 While an association between female gender and death anxiety was observed in another study, ¹⁴ this association was not supported in our final model. This discrepancy may be attributed to limitations in the sample size or to sampling differences between the two studies, since all patients in the present study were receiving outpatient palliative care.

We found a statistically significant association of higher death anxiety with lower combined household income. Economic disadvantage may result in food and housing insecurity, and the inability to afford uninsured health care, transportation expenses, funeral costs, hospice care or home care, ¹⁵ or additional paid support. Economic insecurity may diminish self-esteem as patients experience more difficulty meeting culturally valued markers of success, thereby increasing death anxiety levels. ¹⁷ Additionally, economic challenges could limit access to activities that foster social support or paid professional psychosocial support. The lack of social support, particularly among those with attachment insecurity, can further elevate death anxiety levels. ¹⁶

There is an association between solitary living and death anxiety because individuals living alone may be more socially isolated, ¹⁶ particularly when they are unable to work and lose the social connection from employment. The absence of social support may affect attachment security, thereby intensifying death anxiety symptoms, as postulated in terror management theory. ¹⁷ Additionally, living alone may make it more challenging to manage the complex treatment demands associated with advanced cancer, thereby increasing death anxiety levels and mortality rates. ¹⁶ Alternatively, social isolation may heighten fears of cancer recurrence and progression, potentially exacerbating death anxiety. ¹⁸

Clinical implications

The relatively high prevalence of death anxiety among patients with advanced cancer receiving specialized palliative care underscores the need for greater attention to this symptom in clinical care. Further research should assess the extent to which more targeted psychosocial or palliative care interventions can alleviate death anxiety. In that regard, a psychotherapeutic intervention for patients with advanced cancer, Managing Cancer and Living Meaningfully (referred to as CALM) was shown, in a large randomized controlled trial, to reduce death anxiety among advanced cancer patients with moderate levels of death anxiety at baseline. ¹⁹ Alternatively, community-based support for patients who are socioeconomically disadvantaged and living alone could alleviate death anxiety in this population.

Future directions

Further research should evaluate death anxiety in larger, more diverse samples and across multiple clinical, geographic, and cultural settings. Qualitative research could illuminate the experience of death anxiety in patients with advanced cancer and the impact of living arrangements and socioeconomic status on this outcome. Finally, further research should explore the effectiveness of targeted psychological, social and palliative care interventions to relieve death anxiety in patients with advanced cancer.

Strengths and limitations

A strength of this study is the use of a validated death anxiety measure in a sample of patients with advanced cancer receiving specialized outpatient palliative care. The study sample was diverse, with nearly half of the participants born outside of Canada, thereby enhancing the generalizability of the findings to immigrant populations. However, the sample consists of predominantly White, well-educated, and English-speaking participants. Additionally, participants were recruited from a single tertiary care center as part of a validation study of a separate measure. These factors, therefore, impact the generalizability of the findings. Another limitation is that this study may have lacked sufficient statistical power due to the sample size. Finally, data were collected during the COVID-19 pandemic when social isolation may have heightened death anxiety, though the prevalence is similar to that reported in other studies. ²⁰

Conclusions

Death anxiety is a common form of distress among patients with advanced cancer receiving specialized palliative care, with over 40% experiencing moderate to severe levels. Patients who were living alone and who had lower household incomes were at particular risk for this symptom, underscoring the intersection between death anxiety and social determinants of health. These findings highlight the need for greater attention to death anxiety and its social determinants within oncology and palliative care settings, particularly for high-risk populations. Further research is needed to assess the extent to which targeted psychosocial and palliative care interventions can alleviate death anxiety in patients with advanced cancer and other life-threatening diseases.

Supplemental Material

sj-docx-1-pmj-10.1177_02692163261450754 – Supplemental material for Social determinants of death anxiety in patients with advanced cancer receiving outpatient palliative care

Supplemental material, sj-docx-1-pmj-10.1177_02692163261450754 for Social determinants of death anxiety in patients with advanced cancer receiving outpatient palliative care by Emily Lau, Melissa Miljanovski, Kenneth Mah, Gilla K. Shapiro, Ashlee R. Loughan, Athena Li, Anne Rydall, Camilla Zimmermann, Breffni Hannon and Gary Rodin in Palliative Medicine