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. Author manuscript; available in PMC: 2023 Sep 27.
Published in final edited form as: J Pain Symptom Manage. 2023 Apr 19;66(2):102–115. doi: 10.1016/j.jpainsymman.2023.04.011

Factors Associated with Distress Related to Posttraumatic Stress Disorder at the End of Life Among U.S. Veterans

Anica Pless Kaiser 1,5,6, Jennifer Moye 1,2,3, Lola Baird 1, Zachary Sager 1,2,3,7, Melissa Wachterman 1,3,4,7
PMCID: PMC10524384  NIHMSID: NIHMS1893929  PMID: 37084828

Abstract

Context:

Posttraumatic stress disorder (PTSD) may emerge or re-emerge at end-of-life (EOL), increasing patient suffering. Understanding factors associated with PTSD at EOL may assist clinicians in identifying high risk veterans.

Objective:

To determine rates of and variables associated with PTSD-related distress at EOL.

Methods:

Retrospective observational cohort study including veterans who died within a Veterans Affairs (VA) inpatient setting between October 1, 2009 and September 30, 2018 whose next-of-kin completed the Bereaved Family Survey (BFS; N=42,474). Our primary outcome was PTSD-related distress at EOL, as reported by veteran decedents’ next-of-kin on the BFS. Predictors of interest included combat exposure, demographic variables, medical and psychiatric comorbidity, primary serious illness, and palliative care support.

Results:

Veteran decedents were majority male (97.7%), non-Hispanic white (77.2%), 65 years or older (80.5%), without combat exposure (80.1%). Almost one in ten (8.9%) veteran decedents experienced PTSD-related distress at EOL. In adjusted analyses, combat exposure, younger age, male sex, and non-white race were associated with PTSD-related distress at EOL. High overall medical comorbidity, dementia, and psychiatric comorbidities including both substance use disorder and depression, were also associated with PTSD-related distress at EOL. Palliative care consultation and emotional support were associated with decreased odds of PTSD-related distress, while pain was associated with increased odds of PTSD-related distress at EOL.

Conclusion:

Trauma and PTSD screening, pain management, and providing palliative care and emotional support at EOL, particularly in at-risk groups such as veterans from racial/ethnic minority backgrounds and those with dementia, are critical to decreasing PTSD-related distress at EOL.

Keywords: PTSD, End-of-Life, Veterans, Palliative Care, Health Disparities, Dementia

Introduction

Posttraumatic Stress Disorder (PTSD) at end-of-life (EOL) has received increasing recognition as an area of clinical relevance (1–6). PTSD symptoms (intrusions, avoidance, negative alterations in cognition and mood, hyperarousal) may develop after a person experiences exposure to “death, threatened death, actual or threatened serious injury, or actual or threatened sexual violence”(7). Within the United States, the lifetime prevalence of PTSD is 7–8%, (8) with veterans having higher rates, especially those who are medically-ill (9,10). At EOL, the desire to resolve unfinished business coupled with increasing thoughts of impending mortality may result in a reemergence of PTSD symptoms, complicating the dying process (11–14).

Little is known about what factors are associated with experiencing PTSD-related distress at EOL, particularly in older veterans (1). In non-EOL studies, rates of PTSD are higher among adults who are female, younger, and identify as racial or ethnic minorities (15,16). In older adults, greater medical, mental health (MH), and cognitive comorbidities (17–21) are associated with PTSD. Moreover, serious illness and its sequela, such as delirium, and advanced medical interventions such as intensive care unit (ICU)-level care, have been linked to the development of PTSD (5,22). While greater utilization of hospice and provision of palliative care (PC) are associated with reduced emotional distress in patients and caregivers overall, recent evidence suggests that greater attention to PTSD at EOL is still needed (23,24).

This paper examines the association of demographic covariates, clinical characteristics, and key elements of PC support with PTSD-related distress at EOL in a sample of veterans who died in VA inpatient settings.

Methods

Study Design and Setting

We conducted a retrospective cross-sectional secondary data analysis evaluating care delivered within 146 Veterans Affairs Medical Centers (VAMCs) where next-of-kin completed the VA’s Bereaved Family Survey (BFS) (Appendix A). The study was approved by the VA Boston Healthcare System institutional review board.

Participants

The cohort included veterans who died at VAMCs between October 1, 2009 and September 30, 2018. There were N = 88,712 patients who died during the study period whose next-of-kin responded to the BFS. Of the full sample, there were N = 42,474 with complete BFS data on the outcome and variables of interest described below.

Data Sources

Data were obtained from the VA Corporate Data Warehouse (CDW) (25), which provided psychiatric diagnosis comorbidity and serious illness data, and the Veteran Experience Center (VEC), which provided the BFS and medical comorbidity data (26,27). BFS data are collected from families of patients who have died in a VAMC to understand their perceptions of care received in the last month of life. The BFS, which is endorsed by the National Quality Forum (NQF) (28), has strong psychometric properties (29–31) and is used extensively by VA to evaluate quality of EOL care in VA facilities. Veterans are excluded from the BFS if they died within 24 hours of admission, died by suicide, or did not have a next-of-kin listed in the electronic medical record.

Measures

Primary Outcome:

PTSD-Related Distress.

Using the BFS, we examined family members’ assessment of their veteran’s PTSD symptoms at EOL using the questions: “Some veterans near the EOL re-experience the stress and emotions that they had when they were in combat. Did this happen to him/her in the last month of life?” (item 10) and “How often did the stress make him/her uncomfortable?” (item 11). We dichotomized PTSD-related distress into 0 = never/sometimes and 1 = usually/always. Our primary outcome, PTSD-related distress, referred to a response of “usually/always”. For the purpose of this paper we considered this uncontrolled PTSD-related distress.

Predictors of Interest:

Combat Exposure.

Combat exposure was indicated from the “combat flag” variable within CDW, indicating service in a combat zone with 0 = no combat flag, 1 = combat flag present.

Demographic Covariates.

Age, sex, race/ethnicity, and rurality were extracted from CDW. Age was assessed in years, and dichotomized into less than 65, 65 or older. Sex was assessed as male or female. Race and ethnicity were coded as: Black, Non-Hispanic White, Non-Black Hispanic, and Other. Rurality of veteran residence was categorized using the veteran’s home zip code converted to aggregated rural-urban commuting area (32) as: urban area, large rural town, small rural town, or isolated small rural town.

Medical Comorbidities and Uncontrolled Pain.

Variables to examine two aspects of medical comorbidity were created. A modified Elixhauser Comorbidity Index obtained from VEC that closely matched that utilized in Thompson et al., (33) was used to measure overall comorbidity, with a total score calculated based on the presence of 31 medical conditions (note that complicated hypertension was included in the VEC index, which was not included in Thompson et al.). An uncontrolled pain variable was created from items 8 and 9 of the BFS: “In the last month of his/her life, did [name] have pain or did he/she take medicine for pain?” (item 8) and “How often did the pain make him/her uncomfortable?” (item 9). Responses to these items were dichotomized into 0 = never/sometimes and 1 = usually/always, similar to PTSD-related distress.

Primary Serious Illness.

Using methods adapted from other studies (34, 35, 36), including two VA studies that also used BFS data (35, 36), CDW data was used to categorize primary serious illness into eight groups (end-stage renal disease, cancer, heart failure, pulmonary disease, dementia, frailty, hepatic disease, other) based on ICD-9/ICD-10 codes from inpatient admission diagnoses in the last year of life, which likely represent the most serious illnesses faced near the end of life (Appendix B). We elected not to use cause of death data from death certificates because of their established inaccuracies (37, 38). Patients were each categorized into one of the eight mutually-exclusive primary serious illness groups, which were hierarchically organized in the order listed above (see Appendix C for additional details about the methodology we used to categorize patients).

Psychiatric Comorbidities.

Anxiety disorders, depressive disorders, and substance use disorders, which are frequently comorbid with PTSD, were present if the diagnosis was coded in at least two outpatient encounters or one inpatient encounter in the two years prior to death. All variables were categorical with values 0 = no diagnosis, 1 = diagnosis present. In addition, we obtained the percent diagnosed with PTSD (at least two outpatient or one inpatient clinical encounters) in the two years prior to death. PTSD diagnosis was not included in analyses because it was not independent from the outcome variable.

Key Elements of Palliative Care Support.

Five PC support variables related to key elements of PC that provide support (39) were created: PC consultation and chaplain visit – as extracted from CDW, and listening, spiritual support, and emotional support – as rated on the BFS. A PC consult within the last 90 days of life and/or contact with a chaplain were coded as 0 = no, 1 = yes. As part of the BFS, family members rated care provided to the veteran in the last month of life. Family members rated clinical staff on whether they took time to listen (item 2) (coded as 0 = never/sometimes, 1 = usually/always), provided spiritual support (item 12) (coded as 0 = never/sometimes, 1 = usually/always/did not want or need spiritual support), and provided emotional support (item 13) (coded as 0 = never/sometimes, 1 = usually/always/did not want or need emotional support).

Statistical Methods

Descriptive analyses were used to examine patient factors, including combat exposure, demographics, clinical characteristics, and PC support, and the relationships among these variables and the outcome (PTSD-related distress). Unadjusted associations were examined, using correlations and chi square tests. Variables related to the outcome (p < .05) were retained in adjusted analyses. Hierarchical logistic regression was used to examine adjusted relationships between combat (Step 1), demographic covariates (Step 2), clinical characteristics (Steps 3–5), and PC support (Step 6) with PTSD-related distress at EOL. Cases with complete data on all study variables were included in analyses, performed in SPSS (40).

Results

Participants and Descriptive Data

Table 1 presents demographic information for the total BFS sample (N = 88,712) and the analytic sample (N = 42,474). There were no statistical differences in demographic features between the analytic and the full BFS samples. In the analytic sample, the majority of veteran decedents were male (97.7%), non-Hispanic white individuals (77.2%), 65 years or older (80.5%), non-combat (80.1%), and resided in urban areas (85.8%). The primary serious illness of record for 48.2% of the analytic sample was cancer, just about half (49.2%) reported uncontrolled pain, the average medical comorbidity index rating was 5.6, and a minority were diagnosed with psychiatric disorders (9.7% depressive disorder; 9.0% substance use disorder; 3.9% anxiety disorder).

Table 1.

Participants and Descriptive Data

Variable Analytic sample (N = 42,474) Full BFS (N = 88,712)
N % N %
Age
 <65 8,236 19.40 17,367 19.60
 ≥65 34,238 80.60 71,342 80.40
Sex
 Male 41,493 97.70 86,773 97.80
 Female 981 2.30 1,936 2.20
Race/Ethnicity
 Black 7,203 17.00 13,167 18.20
 Non-Hispanic White 32,781 77.20 55,318 76.40
 Non-black Hispanic 1,900 4.50 2,966 4.10
 Other 590 1.40 967 1.30
Combat
 Yes 8,487 20.00 17,592 21.70
 No 33,987 80.00 63,407 78.30
Rurality
 Urban 35,709 85.90 74,710 86.00
 Large rural 2,988 7.20 6,178 7.10
 Small rural 1,699 4.10 3,423 3.90
 Isolated small rural 1,190 2.90 2,567 3.00
Primary Serious Illness
 Cancer 20,465 48.20 40,205 45.50
 ESRD 2,793 6.60 5,442 6.10
 CHF 1,756 4.10 3,290 3.70
 COPD 2,986 7.00 6,193 7.00
 Dementia 3,138 7.40 7,460 8.40
 Frailty 6,229 14.70 13,798 15.60
 Hepatic 358 0.80 706 0.80
 Other 4,749 11.20 11,442 12.90
Uncontrolled Pain
 Yes 20,866 49.10 35,521 49.70
 No 21,608 50.90 36,021 50.30
PTSD-Related Distress
 Yes 3,838 9.00 5,460 8.10
 No 38,636 91.00 61,924 91.90
Substance Use Disorders
 Yes 3,803 9.00 7,856 8.90
 No 38,671 91.00 80,710 91.10
Anxiety Disorders
 Yes 1,700 4.00 3,419 3.90
 No 40,774 96.00 85,147 96.10
Depressive Disorders
 Yes 4,176 9.80 8,333 9.40
 No 38,298 90.20 80,233 90.60
N M (SD) N M (SD)
Comorbidity Score 42,474 5.58 (2.73) 82,386 5.38 (2.71)
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Note. There were no statistical differences between the analytic and full sample.

Nine percent (N = 3,838) of the analytic sample had a PTSD diagnosis based on clinical encounter in the two years preceding death. A similar percentage, 8.9%, were reported to have experienced PTSD-related distress at EOL. Of these Veterans, 33.8% had a clinical diagnosis of PTSD and 66.2% did not.

Main Results

Unadjusted Estimates.

Table 2 presents unadjusted associations between study variables and PTSD-related distress at EOL. All variables of interest, except rurality and if the veteran had a chaplain visit, were significantly related to PTSD-related distress at EOL and were retained in the adjusted model. Notably, veterans who were younger, male, combat-exposed, or from a racial/ethnic minority background were more likely to exhibit PTSD-related distress at EOL. In addition, those with uncontrolled pain, dementia, depressive, anxiety, or substance use disorders were more likely to have exhibited PTSD-related distress. Veterans who had a higher mean number of medical comorbidities were more likely to exhibit PTSD-related distress. Veterans who had a PC consult, felt listened to, had their spiritual needs met, or were emotionally supported were less likely to exhibit PTSD-related distress at EOL.

Table 2.

Unadjusted Estimates of Variables Associated with PTSD-Related Distress at EOL

Variable Category PTSD-related distress chi-square df p Effect size
No
N (%)		 Yes
N (%)		 η2
Age <65 7,203 (18.6) 1,033(26.9) 152.83 1 <.001 .060
>=65 31,433 (81.4) 2,805(73.1)
Sex Male 37,686 (97.5) 3,807(99.2) 42.18 1 <.001 .032
Female 950 (2.5) 31 (0.8)
Race/Ethnicity Black 6329 (16.4) 883 (23.0) 169.73 3 <.001 .063
Non-Hispanic White 30,138 (78.0) 2643 (68.9)
Non-Black Hispanic 1674 (4.3) 226 (5.9)
Other 504 (1.3) 86 (2.2)
Combat Yes 7,184 (18.6) 1,303 (33.9) 514.88 1 <.001 .110
No 31,452 (81.4) 2,535 (66.1)
Rurality Urban 32,498 (85.9) 3,211 (85.4) 1.98 3 .577 .007
Large rural 2,715 (7.2) 273 (7.3)
Small rural 1,546 (4.1) 153 (4.1)
Isolated small rural 1,069 (2.8) 121 (3.2)
Primary Serious Illness Group Cancer 18,671 (48.3) 1,796 (46.8) 20.75 7 .004 .022
ESRD 2,498 (6.5) 295 (7.7)
CHF 1,583 (4.1) 173 (4.5)
COPD 2,710 (7.0) 276 (7.2)
Dementia 2,826 (7.3) 312 (8.1)
Frailty 5,706 (14.8) 523 (13.6)
Hepatic 316 (0.8) 42 (1.1)
Other 4,326 (11.2) 421 (11.0)
Uncontrolled Pain Yes 17,934 (46.4) 2,932 (76.4) 1255.21 1 .001 .172
No 20,702 (53.6) 906 (23.6)
Depressive Disorders Yes 3,554 (9.2) 622 (16.2) 193.39 1 .001 .067
No 35,082 (90.8) 3,216 (83.8)
Anxiety Disorders Yes 1485 (3.8) 215 (5.6) 28.09 1 .001 .026
No 37,151 (96.2) 3,623 (94.4)
Substance Use Disorders Yes 3238 (8.4) 565 (14.7) 172.17 1 <.001 .064
No 35,398 (91.6) 3273 (85.3)
Palliative Care Consult Yes 27,905 (72.2) 2,582 (67.3) 42.24 1 .001 .032
No 10,731 (27.8) 1256 (32.7)
Chaplain Visit Yes 31,991 (82.8) 3,157 (82.3) 0.73 1 .388 .004
No 6645 (17.2) 681 (17.7)
Felt Listened to Yes 35,973 (93.1) 3312 (86.3) 233.32 1 .001 .074
No 2663 (6.9) 526 (13.7)
Spiritual Needs Met Yes 31258 (80.9) 2803 (73.0) 136.17 1 .001 .057
No 7378 (19.1) 1035 (27.0)
Emotional Support Yes 32,982 (85.4) 2,927 (76.3) 221.35 1 .001 .072
No 5654 (14.6) 911 (23.7)
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Note. Modified Elixhauser Comorbidity in Veterans without PTSD-related distress = (M, SD) 5.54, 2.71 versus with PTSD-related distress = (M, SD) 5.98, 2.83, t=9.54, p<.001, Cohen’s d = 2.72.

Adjusted Estimates.

Table 3 displays the final logistic regression model examining the association between retained variables and PTSD-related distress at EOL. Demographic covariates of EOL younger age (OR = 0.78, 95% CI 0.72 – 0.85), being male (OR = 3.11, 95% CI = 2.16 – 4.48), being from a racial/ethnic minority background (versus Caucasian Non-Hispanic) including Black (OR = 1.52, 95% CI 1.40 – 1.66), Non-Black Hispanic (OR = 1.61, 95% CI 1.39 – 1.88), other (OR = 1.93, 95% CI 1.52 – 2.47) were associated with PTSD-related distress at EOL as was combat exposure (OR = 2.42, 95% CI 2.24 – 2.61). Clinical characteristics of medical comorbidity (OR = 1.03, 95% CI 1.02 – 1.04), uncontrolled pain (OR = 3.60, 95% CI 3.32 – 3.89), having a dementia diagnosis in year prior to death (versus a diagnosis of cancer; OR = 1.43, 95% CI 1.25 – 1.64), having a substance use disorder (OR = 1.38, 95% CI 1.24 – 1.54), having a depressive disorder (OR = 1.62, 95% CI 1.46 – 1.79), and having an anxiety disorder (OR = 1.25, 95% CI 1.07–1.46) were associated with PTSD-related distress at EOL. Finally, the absence of PC support variables, specifically not having a PC consult (OR = 0.88, 95% CI 0.82 – 0.95), not feeling listened to (OR = 0.69, 95% CI 0.61 – 0.78), and not having emotional needs met (OR = 0.80, 95% CI 0.72 – 0.90) were all associated with increased odds of reporting PTSD-related distress at EOL.

Table 3.

Adjusted Estimates of Variables Associated with PTSD-Related Distress at EOL

Variables B S.E. Wald df p Odds Ratio (OR) 95% C.I. OR
Lower Upper
Combat 0.883 0.038 532.165 1 <.001 2.419 2.244 2.608
Demographic Covariates
Age −0.250 0.044 32.616 1 <.001 0.779 0.715 0.849
Sexa 1.134 0.186 36.976 1 <.001 3.107 2.156 4.477
Race/Ethnicity
 Blackb 0.420 0.044 90.280 1 <.001 1.521 1.395 1.659
 Non-Black Hispanicb 0.477 0.077 38.206 1 <.001 1.611 1.385 1.875
 Otherb 0.659 0.124 28.052 1 <.001 1.933 1.515 2.468
Medical Comorbidities
 Comorbidity 0.029 0.007 19.671 1 <.001 1.030 1.017 1.043
 Uncontrolled Pain 1.280 0.040 1007.761 1 <.001 3.595 3.322 3.891
Serious Illness Group
 ESRDc 0.052 0.071 0.544 1 .461 1.053 0.917 1.210
 CHFc 0.113 0.088 1.632 1 .201 1.120 0.941 1.331
 COPDc 0.095 0.071 1.791 1 .181 1.100 0.957 1.265
 Dementiac 0.360 0.069 27.666 1 <.001 1.434 1.254 1.640
 Frailtyc −0.015 0.055 0.072 1 .788 0.985 0.885 1.097
 Hepaticc 0.082 0.174 0.220 1 .639 1.085 0.772 1.526
 Otherc 0.083 0.060 1.938 1 .164 1.087 0.967 1.223
Psychiatric Comorbidities
 Substance Use Disorders 0.322 0.055 34.143 1 <.001 1.380 1.238 1.537
 Depressive Disorders 0.480 0.052 86.670 1 <.001 1.616 1.461 1.788
 Anxiety Disorders 0.223 0.081 7.684 1 .006 1.250 1.068 1.464
Palliative Support
 Palliative Care Consult −0.128 0.039 10.705 1 .001 0.880 0.815 0.950
 Felt Listened to −0.376 0.062 36.921 1 <.001 0.687 0.608 0.775
 Spiritual Needs Met −0.084 0.050 2.782 1 .095 0.920 0.833 1.015
 Emotional Support −0.219 0.056 15.104 1 <.001 0.803 0.719 0.897
 Constant −4.030 0.203 393.158 1 <.001 0.018    
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Note. Reference categories are

a

Male

b

Non-Hispanic White,

c

Cancer.

The Odds Ratio was calculated using Exp(B).

Discussion

Among 42,474 veterans who died in a VAMC between 2009 and 2018, we found that approximately one in ten were reported by family to have experienced PTSD-related distress at EOL. This rate of PTSD-related distress may represent an underestimation of PTSD at EOL as it is based on family observations of the “stress and emotions of combat” and may be limited by lack of knowledge of PTSD symptoms and inability to observe all symptoms of PTSD, such as emotional numbing or avoidance. PTSD-related distress at EOL was associated with demographic, clinical, and key elements of PC support. As found in other studies (15,16) in non-EOL samples, veterans who were combat-exposed, who were younger, and who identified as belonging to racial or ethnic minority groups were more likely to exhibit PTSD symptoms. This study furthers our understanding of PTSD across the lifespan and highlights that PTSD-related distress may continue to impact veterans’ lives even in the time immediately preceding death.

The findings of racial/ethnic minority association with PTSD-related distress may point to the disproportionate burden of trauma faced by marginalized groups and disparities in the delivery of EOL and MH care. In previous studies, bereaved family members of racial/ethnic minority veterans provided lower quality ratings of EOL care (41), particularly for Black veterans, which were not explained by PC processes (42). Individuals from racial and ethnic minority groups report lower awareness of and access to PC (43,44) and less access to MH care despite disproportionate exposure to trauma across the lifespan and higher rates of PTSD (45–47). Contextual and historical factors should also be considered – including those specific to Vietnam era experiences – as Vietnam veterans represent the largest portion of currently older veterans (48). Black and Hispanic Vietnam era veterans have higher rates of combat and trauma exposure and Black Veterans experienced more prejudice and negative experiences with homecoming compared to Hispanic and White veterans (49). In addition, Hispanic Vietnam veterans entered Vietnam with greater pre-war vulnerabilities, which are associated with greater PTSD symptom burden (49). These findings raise concern that PTSD-related distress is not being adequately screened for in marginalized groups, particularly at EOL. The disparities in trauma exposure, PTSD, MH care access, and PC quality are cumulative and likely to interact and contribute to more distress at EOL amongst individuals who identify as racial/ethnic minorities, representing a critical and urgent concern for the field.

The findings that younger age, rather than older age, is associated with heightened risk for PTSD-related distress is consistent with previous studies (21), which may indicate that older age may incur some protection against PTSD, perhaps associated with increased resilience or increased opportunities for MH treatment across the lifespan (50). In this study, men were more likely to report PTSD-related distress at EOL, which is not consistent with previous work (15,16), perhaps related to the disproportionate representation of older men in this sample.

Consistent with prior studies we found that medical comorbidity, psychiatric comorbidity, and primary diagnosis of dementia in the year prior to death were associated with PTSD-related distress at EOL (17–21). Numerous studies find associations between dementia and PTSD (17,18,51,52), which postulate that PTSD heightens the risk for dementia and that dementia may heighten PTSD symptoms. More work is needed to develop optimal strategies for managing PTSD-related distress in veterans with advanced dementia at EOL.

Likewise, numerous studies find associations between pain and PTSD. While shared vulnerability and mutual maintenance paradigms link PTSD and pain (53,54), evidence is mixed (55) and combat trauma may increase pain thresholds (56), complicating clinical assessment. Studies are lacking on the relationship between pain at EOL and PTSD; pain models that include the totality of physical, emotional, social, and spiritual sources of suffering, or “total pain” (57) should incorporate PTSD as a possible contributor.

Given the association between comorbid MH diagnoses and PTSD-related distress at EOL, it is important to consider ways to more adequately address MH at EOL. Previous research of seriously ill hospitalized veterans found disparities in MH treatment, particularly in those with a non-cancer diagnosis (58). The VA has recently made efforts to improve access to MH treatment at EOL, focusing specifically on Vietnam veterans. With similarities in rates of PTSD between Vietnam veterans and those of more recent wars, developing approaches to decrease PTSD-related distress at EOL now would serve future generations of veterans.

Unfortunately, despite the availability of evidence-based psychological and pharmacologic treatments for PTSD, none have been studied in patients approaching EOL. Treatments may take weeks to complete or be effective, creating challenges for patients with a limited prognosis. More research is needed to understand if PTSD treatment offered earlier in a veteran’s life alleviates PTSD-related distress at EOL.

Despite the challenges in addressing mental suffering in veterans at EOL, our study suggests possible helpful interventions. In this sample, veterans who received a PC consult and whose family reported that the patient and family felt listened to and had emotional needs met were less likely to experience PTSD-related distress at EOL. Improved PTSD screening at EOL, particularly in combat veterans, coupled with delivery of PC and focus on emotional support, may serve as a potential framework for alleviating EOL PTSD-related distress. Thankfully, the growing recognition of the role of trauma-informed care within PC dovetails with our findings (59).

Limitations

Our study has several limitations. First, while the study is, to our knowledge, the first to examine PTSD-related distress near the end of life using patient-centered, family-reported data, we measured PTSD-related distress based on family report, which requires observation and accurate recognition of PTSD-related symptoms. It may be difficult for families to differentiate PTSD-related distress from other forms of EOL distress, and their reports may not capture PTSD symptoms that are less visible, such as intrusive memories or emotional numbing. Furthermore, the BFS emphasis on combat-related symptoms may miss PTSD-related distress arising from other traumatic events such as interpersonal violence or childhood abuse.

Relatedly, although the BFS asks about symptom frequency, it does not ask about symptom intensity. Thus, in our analyses, patients who, based on proxy report, only “sometimes” experienced PTSD-related distress would be categorized as not having had PTSD-related distress even if the distress was of severe intensity when it did occur. This same limitation exists for the BFS measure of pain, a covariate in our analyses. These limitations of the BFS are more than outweighed by its strength as the only national data source of patient- and family-reported outcomes on the quality of EOL care across a health care system (60), an assertion supported by its status as a National Quality Forum-endorsed quality measure.

Another limitation is that the study cohort is limited to those with complete BFS data; therefore, because veterans who have a family member who completes the BFS may be different from those who do not, nonresponse bias is possible. Our study also only includes veterans who died in VA inpatient facilities, and thus findings may not generalize to the growing number of veterans who die in non-VA settings or to non-veterans. We examined outcomes for veterans who died in any VA inpatient setting, and thus cannot capture potential differences in outcomes by specific VA inpatient setting of death, which include acute care, Community Living Centers (i.e. VA nursing homes), and hospice and palliative care units.

A limitation of our approach to defining primary serious illness is that, while it avoids documented limitations in using death certificate data (37, 38), categorizing patients into mutually exclusive diagnosis groups based on ICD-9 and ICD-10 codes does not address multimorbidity. Furthermore, for some diagnoses, most notably cancer and dementia, ICD-9 and ICD-10 codes do not provide information about disease severity. Thus, as is true with death certificate data, the approach provides only a proxy for the most important serious illness that affected the EOL experience. Finally, our data are broadly cross-sectional so can only speak to associations amongst variables rather than predictive effects.

Conclusion

One in ten veterans who died in VAMCs between 2009–2018 exhibited PTSD-related distress at EOL as reported by family members. Odds of experiencing PTSD-related distress at EOL were higher in those with combat exposure, younger age, and who identified as racial/ethnic minorities, as well as those who had dementia or psychiatric comorbidities. PC consultation and family reports of emotional support were associated with lower odds of PTSD-related distress at EOL. Results highlight the importance of PTSD screening and the role of PC and provision of emotional support in reducing PTSD-related distress at EOL, especially among veterans from racial and minority groups as well as those with dementia.

Key Message.

Factors associated with PTSD-related distress at end-of-life (EOL) were examined among 42,474 veterans who died in VA inpatient settings. Combat exposure, age, race/ethnicity, multimorbidity, and dementia had higher odds, and palliative care and emotional support had lower odds of PTSD-related distress at EOL, highlighting a need for improved screening and trauma-informed care at EOL.

Funding

This work was supported by the VA Office of Rural Health. Additional support was provided by a VA Rehabilitation Research and Development (VA RR&D) Service award IK2 RX001832-01A2 of the US Department of Veterans Affairs (Pless Kaiser, PI). This material is the result of work supported with resources and the use of facilities at VA Boston Healthcare System. The contents do not represent the views of the U.S. Department of Veterans Affairs or the United States Government.

Appendix A. Bereaved Family Survey Questions

  1. First can you tell me how you are related to [NAME]?

    Participant is the deceased’s ___________________

  2. During [NAME’s] last month of life, how much of the time was the staff that took care of [HIM/HER] willing to take time to listen?

    Would you say:

    • Always

    • Usually

    • Sometimes

    • Never

    • Did not speak to staff who took care of [NAME]

  3. During [NAME’s] last month of life, how often did the staff provide [HIM/HER] the medication and medical treatment that you and [HE/SHE] wanted?

    Would you say:

    • Always

    • Usually

    • Sometimes

    • Never

    • Unsure

    • Did not receive treatment

  4. During [NAME’s] last month of life, how often were the staff who took care of [HIM/HER] kind, caring, & respectful?

    Would you say:

    • Always

    • Usually

    • Sometimes

    • Never

    • Unsure

  5. During [NAME’s] last month of life, how often did the staff who took care of [HIM/HER] keep you or other family members informed about [HIS/HER] condition and treatment?

    Would you say:

    • Always

    • Usually

    • Sometimes

    • Never

    • Unsure

  6. Did anyone alert you or your family when [NAME] was about to die?

    • Yes

    • No

    • Unsure

    • Death was unexpected

  7. From what you know about [NAME’s] time as an inpatient, how often do you think [HIS/HER] personal care needs - such as bathing, dressing, and eating meals – were taken care of as well as they should have been?

    Would you say:

    • Always

    • Usually

    • Sometimes

    • Never

    • Unsure

    • Staff was not needed or wanted for personal care

  8. In the last month of [HIS/HER] life, did [NAME] have pain or did [HE/SHE] take medicine for pain?

    • Yes (go to Q9)

    • No (go to Q10)

    • Unsure

  9. [IF YES:] How often did [NAME’s] pain make [HIM/HER] uncomfortable?

    Would you say:

    • Always

    • Usually

    • Sometimes

    • Never

    • Unsure

    • Didn’t have pain

  10. Some Veterans near the end of life re-experience the stress and emotions that they had when they were in combat. Did this happen to [NAME] in the last month of life?

    • Yes (go to Q11)

    • No…0 (go to Q12)

    • Unsure

  11. [IF YES:] How often did [NAME’s] stress make [HIM/HER] uncomfortable?

    Would you say:

    • Always

    • Usually

    • Sometimes

    • Never

    • Unsure

    • Did not re-experience stress and emotions of combat

  12. In [NAME’s] last month of life, how much of the time did the staff who took care of [HIM/HER] provide you and [NAME] the kind of spiritual support that you and [HIM/SHE] would have liked?

    Would you say:

    • Always

    • Usually

    • Sometimes

    • Never

    • Did not want/need spiritual support

  13. In [NAME’s] last month of life, how much of the time did the staff who took care of [HIM/HER] provide you and [NAME] the kind of emotional support that you and [HIM/SHE] would have liked prior to [HIS/HER] death?

    Would you say:

    • Always

    • Usually

    • Sometimes

    • Never

    • Did not want/need emotional support

  14. What about after [NAME’s] death—How much of the time did the staff who took care of [NAME] provide you the kind of emotional support you would have wanted?

    Would you say:

    • Always

    • Usually

    • Sometimes

    • Never

    • Did not want/need emotional support

  15. Would it have been helpful if the VA had provided more information about benefits for surviving spouses and dependents?

    • Yes

    • No

    • Unsure

  16. Would it have been helpful if the VA had provided more information about burial and memorial benefits?

    • Yes

    • No

    • Unsure

  17. Would it have been helpful if the VA had provided more help with [NAME’s] funeral arrangements?

    • Yes

    • No

    • Unsure

  18. Overall, how would you rate the care that [NAME] received in the last month of [HIS/HER] life?

    Would you say:

    • Excellent

    • Very good

    • Good

    • Fair

    • Poor

  19. Is there anything else that you would like to share about [PATIENT’S] care during the last month of life?

    _____________________________________________

    _____________________________________________

    _____________________________________________

  20. Is there anything else that you would like to share about how the care could have been improved for [NAME]?

    ____________________________________________

    _____________________________________________

    _____________________________________________

Appendix B. Primary Serious Illness Group ICD-9 and ICD-10 Codes

Diagnosis Group ICD9 Diagnosis Code ICD10 Diagnostic Code
ESRD 403.01
403.11
403.91
404.02
404.03
404.12
404.13
404.92
404.93
585.5
585.6
 I12.0
I12.0
I12.0
I13.11
I13.2
I13.11
N18.5
N18.6
Cancer 140.xx-172.xx
174.xx-209.xx
235.xx-239.xx
SKIP
230–234 - carcinoma in situ
SKIP
210–229 – benign neoplasm
SKIP 173.xx (Basal cell carcinoma of any body part)


 C00.xx -C14.xx
C15.xx -C26.xx
C30.xx -C39.xx
C40.xx -C41.xx
C43.xx -C44.xx
C45.xx -C49.xx
C50.xx -C50.xx
C51.xx -C58.xx
C60.xx -C63.xx
C64.xx -C68.xx
C69.xx -C72.xx
C73.xx -C75.xx
C76.xx -C80.xx
C7A.xx -C7A.xx
C7B.xx -C7B.xx
C81.xx -C96.xx
D37.xx -D48.xx
D49.xx -D49.xx
SKIP C44.01 (Basal cell carcinoma of skin of lip)
SKIP other basal cell
C44.1x (eyelid)
C44.21x (ear)
C44.31x (face/ nose)
C44.41x (scalp and neck)
C44.51x (trunk)
C44.61x (upper limb)
C44.71x (lower limpb)
C44.81 (overlapping cites)
SKIP •D00-D09
In situ neoplasms
SKIP D10.xx -D36.xx (Benign neoplasms, except benign neuroendocrine tumors)
SKIP D3A.xx -D3A.xx (Benign neuroendocrine tumors)
Congestive Heart Failure CHF
398.91
402.01
402.11
402.91
404.01
404.11
404.91
428.xx		 CHF
I09.x
I11.0
I13.0
I50.1
Chronic Obstructive Pulmonary Disease COPD
491.xx
492.xx
493.2x
494.xx
496.xx		 COPD
J44.1
J43.0
J44.0
J47.9
J44.9
Dementia and Related Neurodegenerative Disorders 290.xx
291.2x
292.82
294.1x
294.2x
331.0x
331.1x
331.2x
331.82
332.0x
333.4
330.1
340
094.1
F01.50
F01.51
F02.80
F02.81
F03.90
F03.91
G30.9
E75.4
A81.00
A81.01
A81.x
G31.83
G40.x
G31.9
G10
G35
A52.17
G20
G31.01
Frailty Delirium
291.0x
292.81
293.0x
293.1x
Hip Fracture
820.xx
733.14
Stroke/Transient Ischemic attack (TIA)
430.xx-436.xx
 Pneumonia
480.xx-487.xx
Incontinence
625.6x
788.3x
Dehydration
276.5x
Leg Cellulitis
682.6x
Syncope
780.2x		 Delirium
F05.xx
R41.0
R44.89
Hip Fracture
S72.009A
M84.459A
Stroke/Transient Ischemic attack (TIA)
I63
 Pneumonia
J12.x-J18.x
Incontinence
N39.3
R32.
Dehydration
E86.x
Leg Cellulitis
L03.115
L03.116
Syncope
R55.
Hepatic Encephalopathy Hepatic encephalopathy
572.2		 Hepatic failure
K72
Other Was not characterized by any other disease category
Missing (.) Did not have inpatient data available in CDW
Open in a new tab

Appendix C. Additional information about methodology used to categorize patients into serious illness groups

Using methods adapted from previous studies1,2, CDW data was used to categorize primary serious illness into eight groups (end-stage renal disease, cancer, heart failure, pulmonary disease, dementia, hepatic disease, frailty, other) based on ICD-9/ICD-10 codes from inpatient admission diagnoses in the last year of life (Appendix B).

Each inpatient admission was associated with one primary diagnosis and potentially one or more secondary diagnoses. Patients could have multiple admissions in the last year of life, in addition to their terminal admission, each with a primary diagnosis. We categorized each patient into one of the eight mutually exclusive primary serious illness groups that were ordered in the following hierarchy - end-stage renal disease, cancer, heart failure, pulmonary disease, dementia, hepatic disease, or frailty. Decedents, who had more than one admission who could thus have multiple primary admission diagnoses, which were categorized using the above hierarchy. For example, if a patient had two admissions in the last year of life, one with a diagnosis of cancer and one with a diagnosis of dementia, the patient’s primary serious illness would be categorized as cancer. For those with none of the 7 primary diagnoses in the last year of life, secondary diagnoses were examined and decedents were categorized using the same hierarchy. If a patient did not have any of the 7 serious illness diagnoses as either a primary or secondary admission diagnosis, then they were categorized in the “other” serious illness group.

Hierarchy of Diagnoses:

  1. End-stage renal disease

  2. Cancer

  3. Congestive Heart Failure (CHF)

  4. Chronic Obstructive Pulmonary Disease (COPD)

  5. Dementia

  6. Frailty (which included: delirium, pneumonia, incontinence, hip fracture, leg cellulitis, syncope, TIA/stroke)

  7. Hepatic Encephalopathy

  8. Other

Algorithm for Categorizing Patients into Diagnosis Groups:

Round 1: Primary admission diagnoses from ICD-9 coding data (Note: patients could have multiple admissions in addition to their terminal admission, each with a primary diagnosis)

Round 2: If “Other” after Round 1, secondary diagnoses

Examples of hierarchical algorithm to categorize patient diagnosis:

Patient #1

Primary diagnoses (round #1): congestive heart failure and dementia

Diagnosis category = “congestive heart failure”

Patient #2:

Primary diagnoses (round #1) cirrhosis, gastrointestinal bleed, pneumonia

End of round #1 diagnosis category = “other”

Secondary diagnoses (round #2): end-stage renal disease, cancer, dementia

Diagnosis category = “end-stage renal disease”

Footnotes

Disclosures

The authors of this manuscript do not have any conflicts of interest (or disclosures) to report.

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