Sadness,Anxiety,and Experiences with Emotional Support among Veteran and Nonveteran Patients and their Families at the End of Life

Abstract

Background:

Although many veterans are progressing into older adulthood and a substantive subset of people who die each year in the United States served in the military, there is limited evidence on the role of military service at the end of life.

Objective:

The objective of the study was to examine differences in caregivers' perceptions of sadness and anxiety at the end of life between veteran and nonveteran patients and levels of contentment with the emotional support provided to the patient and family by hospice staff.

Methods:

This cross-sectional study used clinical information from the Family Evaluation of Hospice Care (FEHC) survey administered to caregivers of a patient who received hospice services. The sample in this study included 560 individuals who completed the FEHC survey (from December 2007 to April 2013) after receiving services at a large hospice in an urban southwestern U.S. city. Caregivers responded to questions on the FEHC survey about demographic information, perceptions of the patient's level of sadness/anxiety, and the emotional support the patient and family received from hospice staff. In addition, information regarding veteran status was obtained from patients' medical records.

Results:

Caregivers of veterans were significantly more likely to report that the patient experienced sadness/anxiety at the end of life, as well as a desire for more emotional support for the family from hospice staff after the death.

Conclusions:

Results provide preliminary evidence for veteran status being a risk factor for emotional distress at the end of life, highlighting the possible need for augmented support services for veterans and their families in hospice and palliative care.

Introduction

Roughly 40% of the total veteran population is 65 years of age or older,¹ and one in four Americans who die once served in the military.² Given this demographic reality, there is a need to better understand the unique needs of military veterans at the end of life. In particular, compared to nonveterans, veterans have been found more likely to exhibit posttraumatic stress disorder (PTSD) symptomatology,³ commit suicide,⁴ drink in excess,⁵ have multiple medical comorbidities, and use medical services at high rates.⁶ It seems possible that these risk factors might carry over as veterans approach the end of their lives and enroll in hospice—a philosophy and type of care that addresses the palliative care needs of terminally ill patients. Notably, one study found that roughly 88% of veterans in hospice experienced at least one neuropsychiatric syndrome.⁷

Although qualitative studies and case reports suggest that veterans may face unique psychosocial and spiritual challenges as they cope with terminal illness,^8,9 no study to our knowledge has directly compared veterans' and nonveterans' levels of end-of-life distress and satisfaction with the emotional support offered by hospice staff. This study examines family members of hospice patients' perceptions of patient sadness/anxiety as well as their level of contentment with the emotional support offered to the patient and family. Given previous findings emphasizing that veterans may represent a high-risk group for psychological problems, it is hypothesized that family members caring for veterans will report higher levels of patient sadness/anxiety and a greater need for emotional support.

Methods

Participants and procedure

This study relied upon information from the Family Evaluation of Hospice Care (FEHC) survey that was provided by 560 informal caregivers following the death of a patient who received services from a large hospice in an urban southwestern U.S. city. These 560 participants were drawn from a larger sample of 3226 individuals who completed the FEHC survey from December 2007 to April 2013. Because veteran patients differed drastically from the rest of the sample in terms of their age and gender (i.e., veterans were older and more likely to be men), the nonveteran comparison group only included male patients and those over the age 46, which was the age of the youngest veteran in the sample. Only 18 of the veterans in the sample were women; since this small subset of female veterans was not large enough to draw any meaningful conclusions, only male veterans were included in the analysis. Because veteran and nonveteran patients likely differed on other crucial demographic factors, only participants with complete demographic information were included in this study (allowing for inclusion of demographic control variables), yielding a total sample size of 560 participants comprised of 306 veteran and 254 nonveteran patients. Those with some missing demographic information were similar to those with complete information in terms of the patient's race, veteran status, and the emotional experience variables examined in this study. However, incomplete responses were somewhat more likely among those who cared for an older patient (p<0.001).

Participants in this study were mailed the FEHC survey one to three months following their relative's death, along with a postage paid, preaddressed envelope for returning the completed survey. Surveys were mailed to the individual listed as the patient's primary caregiver or health representative, most of whom were spouses/partners (63.5%) or adult children (21.5%) of the patient. Most participants provided information about a white patient (88.0%) receiving services at home (55.5%) with a primary diagnosis of cancer (45.5%), and the modal patient's highest level of education was a high school diploma (38.6%). On average, patients were 76.1 years old (SD=11.2) at the time of death and received hospice services for 35.3 days (SD=90.3). Additional details about this sample can be found elsewhere. From this point forward, all caregivers and/or health representatives that completed the FEHC survey will be referred to as “caregivers,” even though some of these individuals may have not been directly involved in the patient's care. Roughly 70% of those surveyed indicated that the family was directly involved in the care of the patient.¹⁰

Measures

All participants provided information on the FEHC survey, which is widely used for program evaluation purposes in hospices across the United States.¹¹ The survey includes questions regarding demographic information as well as the caregiver's perceptions of the patient's emotional well-being and the emotional support the patient and family received from hospice staff. Data regarding veteran status was gathered from patients' medical records.

Independent variables

The patient's veteran status served as the primary independent variable of interest (0=nonveteran, 1=veteran). In an effort to reduce the influence of differences between veteran and nonveteran patients on factors other than military experience, several variables were included in the analyses as statistical controls, including the patient's age, race (0=white, 1=racial minority), and highest level of education.

Dependent variables

Perceptions of patients' emotional well-being were captured by a single item: “While the patient was under the care of hospice, did he or she have any feelings of anxiety or sadness” (0=no, 1=yes)? Support offered for these experiences was assessed for those who indicated that the patient experienced some sadness/anxiety with the following item: “How much help in dealing with these feelings (sadness/anxiety) did the patient receive” (1=less than was wanted, 2=more help or attention to these feelings than patient wanted, or 3=right amount [reference category])? Caregivers' appraisal of the emotional support offered to the family by hospice staff was measured by two items: “How much emotional support did the hospice team provide to you prior to the patient's death?” and “How much emotional support did the hospice team provide to you after the patient's death” (1=less than was wanted, 2=more attention than was wanted, or 3=right amount [reference category])?

Plan of analysis

Binary logistic regression was implemented for binary outcomes, and multinomial logistic regression was used when the outcome variable was assessed on a nominal scale. In each analysis, veteran status was entered as an independent variable, along with the control variables.

Results

An independent samples t test and a chi-square test revealed that veterans tended to be older (t(558)=8.12, p≤0.001) and were more likely to be white (χ²(1)=16.67, p≤0.001) compared to nonveteran patients. However, veteran and nonveteran patients were somewhat similar in terms of their level of education (t(558)=0.70, p=0.490).

Findings from the binary logistic regression analysis revealed that even in the presence of control variables caregivers of veterans were 49% more likely than nonveterans to report that the patient experienced sadness and/or anxiety at the end of life (β=0.11, OR=1.49, p≤0.050). Multinomial logistic regression analyses indicated that caregivers of veterans and caregivers of nonveterans reported similar levels of contentment with the help that the patient received for sadness/anxiety as well as with the emotional support that was offered to the family before the patient died. However, even after controlling for patient demographics, those caring for a veteran were 76% more likely than caregivers of nonveteran patients to report not receiving as much emotional support (versus the “right amount” of support) from hospice staff as they would have liked after the death (β=0.70, OR=1.76, p≤0.050).

Discussion

The results of this study suggest that caregivers of veterans in hospice are more likely to report that the patient experienced anxiety and/or sadness compared to those who care for nonveterans. This finding highlights the potentially important role of military service in end-of-life settings. Notably, military service has been referred to as a “hidden variable” in aging research,¹² which may have long-term consequences in terms of increasing the risk for PTSD and its sequelae over the life span.¹³ In particular, those with PTSD in later life are at greater risk for subsequent physical health problems and poorer psychosocial functioning,^13–18 all of which might contribute to greater distress at the end of life. There is some evidence to suggest that medical illness may spark PTSD-like symptomatology among those who served in combat, even after long periods of being asymptomatic.^19,20 It is also possible that some veterans may confront unresolved guilt/shame or existential concerns related to wartime experiences as they near the end of life.⁹

Although this study revealed that caregivers of veterans reported similar levels of contentment with emotional support/assistance offered to the patient and family before the death occurred, these caregivers were more likely to report a greater need for services after the patient died. This finding fits with past research that has shown a link between patient distress at the end of life and greater risk of chronic grieving among caregivers²¹—which is primarily apparent several months after the loss when the acute period of grieving has passed.²² Thus, it would seem that both veteran patients and their families may be in need of augmented support services.

These findings are limited by a cross-sectional design, racial/ethnic homogeneity of the sample, reliance on caregivers' reports, and use of one-item measures. If these findings are replicated in more methodologically rigorous studies with diverse samples, researchers/clinicians would do well to develop and test interventions geared toward managing distress among veterans and their families at the end of life, in a way that is consistent with the aims of hospice and palliative care.^23,24

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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U.S.. Census Bureau: Population Projections 2008 and 2010 Census Summary File 1. Washington, DC: U.S. Census Bureau, 2011.

National Hospice and Palliative Care Organization. Hospice-Veteran Partnership Toolkit: Ensuring Excellent Care to Our Nation's Veterans, 2nd ed. Available at: http://www.networkofcare.org/library/veterans-toolkit.pdf (Last accessed March 3, 2014).

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