Journal of Pain and Symptom Management
Volume 39, Issue 3 , Pages 507-514, March 2010

Families' Perceptions of Veterans' Distress Due to Post-Traumatic Stress Disorder-Related Symptoms at the End of Life

  • Yesne Alici, MD

      Affiliations

    • Geriatric Services Unit, Central Regional Hospital, Butner, North Carolina, USA
    • Corresponding Author InformationAddress correspondence to: Yesne Alici, MD, Geriatric Services Unit, Central Regional Hospital, Butner, NC 27509, USA.
    • ,
  • Dawn Smith, MS

      Affiliations

    • Philadelphia VA Center for Health Equity Research and Promotion, University of Pennsylvania, Philadelphia, Pennsylvania, USA
    • ,
  • Hien L. Lu, BA

      Affiliations

    • Division of Geriatric Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA
    • ,
  • Amos Bailey, MD

      Affiliations

    • Birmingham VA Medical Center, Birmingham, Alabama, USA
    • ,
  • Scott Shreve, DO

      Affiliations

    • Lebanon VA Medical Center, Lebanon, Pennsylvania, USA
    • ,
  • Kenneth Rosenfeld, MD

      Affiliations

    • VA Greater Los Angeles Health Care System, Los Angeles, California, USA
    • ,
  • Christine Ritchie, MD, MPH

      Affiliations

    • Birmingham VA Medical Center, Birmingham, Alabama, USA
    • ,
  • David J. Casarett, MD, MA

      Affiliations

    • Philadelphia VA Center for Health Equity Research and Promotion, University of Pennsylvania, Philadelphia, Pennsylvania, USA
    • Division of Geriatric Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA

Accepted 30 July 2009. published online 18 January 2010.

Article Outline

Abstract 

Objectives

To define the frequency of post-traumatic stress disorder (PTSD)-related symptoms among veterans who are near the end of life and to describe the impact that these symptoms have on patients and their families.

Methods

Patients had received inpatient or outpatient care from a participating VA facility in the last month of life, and one family member per patient was selected using predefined eligibility criteria. Family members then completed a telephone survey, The Family Assessment of Treatment at End-of-Life, which assessed their perceptions of the quality of the care that the patients and they themselves received during the patients' last month of life.

Results

Seventeen percent of patients (89 of 524) were reported to have had PTSD-related symptoms in the last month of life. PTSD-related symptoms caused discomfort less often than pain did (mean frequency score 1.79 vs. 1.93; Wilcoxon sign rank test, P<0.001) but more often than dyspnea did (mean severity score 1.79 vs. 1.73; Wilcoxon sign rank test, P<0.001). Family members of patients with PTSD-related symptoms reported less satisfaction overall with the care the patient received (mean score 48 vs. 62; rank sum test, P<0.001). Patients who received a palliative care consult (n=49) had lower ratings of discomfort attributed to PTSD-related symptoms (mean 1.55 vs. 2.07; rank sum test, P=0.007).

Conclusion

PTSD-related symptoms may be common and severe among veterans near the end of life and may have a negative effect on families' perceptions of the quality of care that the veteran received.

Key Words: End of life, post-traumatic stress disorder, families' perceptions of the quality of care

 

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Introduction 

Post-traumatic stress disorder (PTSD) is an anxiety disorder that can occur after life-threatening or traumatic events.1 Patients with PTSD typically re-experience the inciting event through nightmares and flashbacks. They also may avoid situations or behaviors that remind them of the event and often experience hypervigilance, irritability, or insomnia.1 Approximately 5%–6% of men and 10%–12% of women will experience PTSD at some point in their lives.2, 3, 4

PTSD is particularly common among veterans. The National Vietnam Veterans Readjustment Study reported that male veterans have a lifetime PTSD prevalence of 30.9% and that half of these experienced chronic PTSD.5, 6 Prevalence rates of 24%–32% have been reported among the Korean War and the Second World War veterans.7, 8 Similarly, studies of PTSD among veterans in primary care have estimated a prevalence between 11% and 36%.9, 10, 11, 12, 13, 14 These numbers are clinically significant, because veterans with PTSD are more likely to use medical treatment services and are more likely to experience marital and parenting difficulties, smoking and substance use disorders, and mortality from various causes.6, 15, 16, 17, 18 A recent 14-year follow-up study found that approximately 10% of Vietnam veterans have persistent PTSD symptoms, which were associated with worse family functioning, more intensive use of mental health services, more nonspecific health complaints, and less life satisfaction.6 PTSD symptoms also have been reported among aging veterans in long-term care settings. Physical ill health was found to be the most significant risk factor associated with reactivation of PTSD symptoms in late life.19, 20

However, little is known about how symptoms of PTSD affect veterans near the end of life. For instance, there have been reports that dying veterans experience an exacerbation of PTSD-related symptoms.21, 22, 23 Furthermore, one case report suggests that these symptoms may complicate the care that these patients receive.22 However, it is not known what proportion of veterans experience PTSD symptoms in the last month of life nor is it known how distressing these symptoms are. Finally, it is not known whether PTSD-related symptoms have a negative effect on other aspects of a veteran's care.

It is important to understand how PTSD symptoms affect veterans' end-of-life care because more than 350,000 veterans die in the United States every year. If PTSD symptoms are common near the end of life and if they are a frequent cause of distress for veterans and their families, then their impact on end-of-life care may be substantial. Therefore, the goals of this study were to define the frequency of PTSD-related symptoms near the end of life among veterans and to describe the impact that these symptoms have on veterans and their families.

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Methods 

Setting and Sample 

This study was conducted in five VA medical centers and their affiliated nursing homes and clinics and was approved by each facility's Institutional Review Board. These sites range in size from 114 to 980 beds and have between 2,850 and 7,050 inpatient admissions per year. We identified patient deaths by using the VA's electronic medical record (EMR) system, which in pilot testing identified more than 95% of deaths within the recruitment window.

Patients were included if they received any inpatient or outpatient care from a participating VA medical center in the last month of life. During infrequent periods when the number of deaths exceeded the interviewers' capacity to conduct interviews, patients were selected at random for omission from the sample. We oversampled inpatient deaths at approximately three times the rate of outpatient deaths to ensure a heterogeneous mix of inpatient sites.

We used the following algorithm to identify potential respondents, in descending order: 1) patient's next of kin; 2) primary contact named in the EMR; 3) individual named as Durable Power of Attorney for Health Care. Because most potential respondents were related to the patient, they are referred to collectively as “family members.” Four to six weeks after the patient's death, family members were sent a letter that described the study and provided a toll-free telephone number they could use to opt out. Approximately six weeks after the patient's death, interviewers made telephone calls to those who did not opt out. Interviewers made six attempts over four weeks, including at least one attempt after 5pm local time. We excluded family members who did not have a working telephone number, those who did not speak English, those with hearing impairment that precluded a telephone interview, and those who said they could not evaluate the care that the patient received in the last month of life.

Data Collection 

After giving oral informed consent, family members provided basic data about the patients and themselves. Next, they completed a survey that assessed their perceptions of the quality of the care and services that the patients and they themselves received during the patients' last month of life and after the patients' deaths. The Family Assessment of Treatment at End-of-Life (FATE) survey was developed using open-ended interviews and iteratively refined through expert panel input, cognitive interviewing, and psychometric testing.24, 25, 26 The instrument has 32 items that reflect key areas of palliative care outlined by current national guidelines.27, 28 All items evaluated outcomes by asking respondents either for frequency ratings (e.g., “How often did [the patient's] pain make him/her uncomfortable?”) or yes/no responses (e.g., “Do you think [the patient] died where he/she wanted to?”).

Three FATE items ask family members whether patients experienced pain, dyspnea, or PTSD-related symptoms in the last month of life. The PTSD question reads “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 [the patient] in the last month of [his/her] life?” For each symptom that family members reported, they were asked how often that symptom made the patient uncomfortable (“Never”—0; “Sometimes”—1; “Usually”—2; “Always”—3). The Diagnostic and Statistical Manual of Mental Disorders, 4th edition, Text Revision, defines PTSD in three symptom clusters of persistent re-experience of the traumatic event, persistent avoidance of stimuli associated with the trauma, and increased arousal. Therefore, a single question cannot capture the full diagnostic profile of PTSD. However, previous research has found that a single PTSD-screening question was 96% specific among patients who were “bothered a lot” by trauma-related memories.29

Family members who completed the interview received a $30 check to compensate them for their time. Those who experienced any distress during the interview were offered an opportunity to speak with a counselor. Additional data (e.g., site of death, diagnoses) were collected from the VA's EMR system.

Data Analysis 

Items were coded as missing if respondents could not answer and as not applicable if they were not relevant to the patient (e.g., for the PTSD item, if a patient did not experience PTSD-related symptoms in the last month of life). Each of the three symptoms (pain, dyspnea, and PTSD) was analyzed both as a dichotomous variable (present/absent) and as an ordinal variable, with a possible range of 0–3, corresponding to the frequency with which each symptom made the patient uncomfortable. Because data were ordinal, nonparametric tests were used to examine associations between PTSD-related symptoms and patient characteristics.

We planned to include at least 450 patients to detect a small difference (0.5 standardized difference, or half of one standard deviation) in families' satisfaction scores between those who recalled a patient having PTSD-related symptoms and those who did not (a=0.05, two-tailed). We assumed that at least 10% of the sample (n>45) would have experienced PTSD-related symptoms. Stata software (Version 8.0; StataCorp., College Station, TX) was used for all statistical analyses.

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Results 

Patient and Family Characteristics 

A total of 1,126 eligible patients were identified, of whom 67 (6%) were randomly selected for omission to manage interviewer workload. Of the remaining patients (n=1,059), 163 (15%) were excluded because contact information for the patient's family was inadequate. Of those family members who could be contacted (n=896), 16 (2%) were excluded because they did not know enough about the patient's care, seven (1%) were excluded because of hearing impairment, and 11 (1%) were excluded, because the family member did not speak English. Of the existing family members, 11 (1%) family members were reluctant to discuss death, 182 (20%) were unable to be contacted, one (0.01%) did not complete the entire interview, and 144 (16%) declined to participate. Of the remaining family members, 524 (58%) completed an interview. The characteristics of patients and family members are described in Table 1. There was no difference between family members who consented and those who refused with respect to patient age, ethnicity, or use of a palliative care consult.

Table 1. Patient Characteristics
CharacteristicsTotal (n=524)Patients with PTSD-Related Symptoms (n=89)Patients without PTSD-Related Symptoms (n=435)P-value
Patient's age, mean (range)72 (27–100)71 (50–94)72 (26–100)0.383

Patient's gender (male)513 (98)88 (99)425 (98)0.481

Patient's ethnicity
African American108 (21)18 (20)90 (21)0.767
White, non-Hispanic395 (75)69 (78)326 (75)
Hispanic11 (2)1 (1)10 (2)
Asian4 (1)0 (0)4 (1)
Other/unknown6 (1)1 (1)5 (1)

Patient's marital status
Single50 (10)7 (8)43 (10)0.167
Married297 (57)62 (70)235 (54)
Divorced/separated79 (15)6 (7)73 (17)
Widowed89 (17)14 (16)75 (17)
Living with partner7 (1)0 (0)7 (2)
Unknown2 (0)0 (0)2 (0)

Respondent's relationship
Spouse/partner257 (49)54 (61)204 (47)0.710
Child135 (26)19 (21)116 (27)
Sibling65 (12)8 (9)57 (13)
Parent24 (5)3 (3)21 (5)
Other43 (8)5 (6)37 (9)

Site of death
Home97 (18)26 (29)103 (24)0.535
Inpatient59 (11)14 (16)78 (18)
Nursing home49 (9)6 (7)35 (8)
Intensive care unit84 (16)11 (12)76 (17)
Inpatient hospice unit151 (29)26 (29)127 (29)
Other/unknown84 (16)6 (10)16 (4)

Participating facility
Philadelphia72 (14)10 (11)62 (14)0.004
Lebanon99 (19)11 (12)88 (20)
Greater Los Angeles76 (15)9 (10)67 (15)
Louisville110 (21)15 (17)95 (22)
Birmingham167 (32)44 (49)123 (28)

Values within parentheses are percents.

Post-Traumatic Stress Disorder-Related Symptoms 

Seventeen percent of family members (89 of 524) reported that the patient experienced PTSD-related symptoms in the last month of life. Of these, 28% (n=25/89) “always” experienced discomfort. Those patients who had PTSD-related symptoms were similar to other patients with respect to age, gender, site of death, and the patient's and respondent's ethnicity (Table 1). Families also were more likely to report PTSD-related symptoms for those patients who had a previous diagnosis of PTSD (26/89 [29%] vs. 22/435 [5%]; χ2 test, P<0.001). Nevertheless, of 89 patients who were observed to have PTSD-related symptoms, most (n=63; 71%) had no previous PTSD diagnosis. The incidence of PTSD-related symptoms varied across the five medical centers (range 9/76 [12%] to 44/167 [26%]; χ2 test, P=0.004), and this difference persisted even after adjusting for previous PTSD diagnosis, respondent relationship and contact frequency, and patient characteristics.

Although PTSD-related symptoms were common in this sample, patients were much more likely to have pain (424/524 [81%]; sign rank test, P<0.001) and dyspnea (403/524 [77%]; sign rank test, P<0.001). However, among those patients who experienced each of these three symptoms, families reported that PTSD-related symptoms made the patient uncomfortable more often than dyspnea did (1.79 vs. 1.73; sign rank test, P<0.001). However, families also said that PTSD-related symptoms caused discomfort less often than pain did (1.79 vs. 1.93; sign rank test, P<0.001). Among patients with PTSD-related symptoms, those who received a palliative care consult (n=49) had lower ratings of discomfort because of those symptoms (mean 1.55 vs. 2.07; rank sum test, P=0.007).

Patients with pain were more likely to experience PTSD-related symptoms (80/424 [19%] vs. 9/100 [9%]; χ2 test, P=0.018). Similarly, patients with dyspnea were more likely to experience PTSD-related symptoms (76/403 [19%] vs. 13/121 [11%]; χ2 test, P=0.037). However, neither the presence of pain (mean 1.83 vs. 1.44; rank sum test, P=0.32) nor dyspnea (mean 1.77 vs. 1.79; rank sum test, P=0.97) was associated with greater discomfort because of PTSD-related symptoms.

Post-Traumatic Stress Disorder-Related Symptoms and Satisfaction with Care 

Family members of patients who had PTSD-related symptoms were more likely to report that they had unmet needs for emotional support in the patient's last month of life (54/89 [61%] vs. 215/435 [49%]; χ2 test, P=0.053). They also were more likely to report worse communication with providers (mean 64 vs. 53; rank sum test, P=0.006) and less attention to the patient's dignity and well-being (mean 62 vs. 49; rank sum test, P=0.015). In addition, family members of patients with PTSD-related symptoms reported less satisfaction overall with the care received (mean 48 vs. 62; rank sum test, P<0.001).

Finally, we examined the association between PTSD-related symptoms and scores in a brief version of the FATE, which is being rolled out nationally to measure the quality of end-of-life care in the VA health care system. This 14-item bereaved family survey is part of the nationwide VA PROMISE Project (Performance Reporting and Outcomes Measurement to Improve the Standard of Care at End-of-Life), which will help to identify opportunities for improvement.26 These 14 items assess families' perceptions of the quality of communication, pain management, and spiritual and emotional support provided to the patient and the family member.26 Families who reported PTSD-related symptoms had lower (worse) scores on the VA quality survey compared with those who did not (mean 52 vs. 61; rank sum test, P=0.005).

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Discussion 

This study offers four key findings that shed light on the frequency and impact of PTSD-related symptoms at the end of life among veterans. First, we found that families believe that PTSD-related symptoms are quite common near the end of life in this population. This finding suggests that these symptoms should be considered along with other more widely recognized disorders, such as depression and anxiety, in the differential diagnoses of psychological distress.30, 31

Second, we found that these symptoms may be difficult to predict accurately. Although families were more likely to report PTSD-related symptoms when veterans had a prior diagnosis of PTSD, most veterans with PTSD-related symptoms did not have a prior diagnosis. There are at least two possible explanations for this discrepancy. First, it is possible that family members may mistakenly attribute behaviors to PTSD. However, it is also possible that many of the patients whose family members perceive PTSD-related symptoms actually do have PTSD that was undiagnosed. In fact, two studies have found that only half of the patients with PTSD identified using the structured interviews had a chart diagnosis of PTSD.29, 32 Regardless of the reason, it appears that a chart diagnosis of PTSD is an imperfect predictor of PTSD-related symptoms, at least as these symptoms are perceived by families.

Third, we found that although PTSD-related symptoms were not as common as pain and dyspnea at the end of life, when they are present, families believe that they cause significant levels of discomfort. In fact, families reported that PTSD caused distress more often than dyspnea. Although distress because of dyspnea has been well described,33, 34 these results suggest that PTSD-related symptoms deserve the same careful assessment and management.

Fourth, PTSD-related symptoms were associated with families' negative perceptions of the care that the patient received in the last month of life. This association seems to extend across both general perceptions of care and several more focused domains (e.g., communication and dignity). However, we also found that the use of a palliative consult service was associated with less discomfort because of PTSD-related symptoms. This suggests that these symptoms have implications for the way families evaluate the quality of care and that palliative care consult teams might be effective in reducing the burden that these symptoms cause.

This study has three main limitations. First, we relied on families' retrospective assessments of these patients' symptoms and distress. Thus, these results reflect the family's perception of the patient's discomfort rather than self-report by the patients. Second, it is also important to note that the PTSD question in the FATE survey is yet to be studied for its discriminant validity to test how reliably it could distinguish PTSD from depression, anxiety, or other emotional distress among veterans at the end of life. The question we used to identify PTSD-related symptoms only addresses one component of the PTSD symptom complex. Other components that were not assessed in the current study included avoidance and symptoms of increased arousal, such as hypervigilance, irritability, and sleep disturbances. Nevertheless, PTSD screening with a single question has been found to be 96% specific in identifying PTSD among patients who were “bothered a lot” by trauma-related memories.29 Therefore, although a single item is not a perfect measure, it would appear to lack sensitivity, making the figures reported here conservative estimates of prevalence. Third, it is possible that some of the associations reported here between the presence of pain, PTSD-related symptoms, and dyspnea may be the result of other, unmeasured variables. For instance, it is possible that certain medical conditions or psychiatric disorders might increase the prevalence of one or more of these symptoms or their detection. Because of the small numbers of patients with two or more of these symptoms, regression analysis is not feasible. However, research is currently underway to better understand these relationships.

A prospective study using PTSD-specific diagnostic instruments would yield the most accurate descriptions of prevalence, phenomenology, and distress in the last month of life. However, such a study would be difficult to be carried out and would require accurate identification of those patients who are in the last month of life, which is challenging. Moreover, a prospective study would be limited by a different set of methodological challenges, including difficulties of performing assessments in patients with cognitive impairment, which would also bias any results. Therefore, we believe that retrospective family reports offer a useful first step in defining the prevalence and impact of PTSD-related symptoms in this population.

Second, a related concern is that it may be difficult for family members to distinguish between PTSD-related symptoms and delirium, which is also common near the end of life.35 It is possible, therefore, that some of the instances in which families reported PTSD-related symptoms were actually delirium. It is also possible that a mood disorder, a psychotic disorder, or an anxiety disorder at the end of life could have been misidentified as PTSD-related symptoms by the families. However, we did find a strong association between families' reports and the presence of a prior PTSD diagnosis, which supports the validity of families' reports. More generally, it is possible that the similarities in phenomenology between the two syndromes are because of shared abnormalities in pathophysiology. For instance, a serotonin imbalance has been proposed in the neuropathogenesis of PTSD and delirium.36, 37 Further research is needed to examine the symptoms of PTSD and delirium, perhaps with neuroimaging studies, to define the similarities and differences of these syndromes.

Previous studies have concluded that PTSD is often underdiagnosed in medical settings,13, 32, 38 and these results suggest that this may also be true of PTSD-related symptoms near the end of life. Additional research is needed to better define the characteristics of PTSD in this population and to uncover mechanisms of pathogenesis. Nevertheless, these data suggest that these symptoms may be both common and distressing in a veteran population and should be a part of palliative evaluation and management.

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 This work was supported by a Health Services Research and Development Merit Award from the Department of Veterans Affairs (Dr. Casarett) and by a Presidential Early Career Award for Scientists and Engineers (Dr. Casarett). The views expressed here are those of the authors and do not necessarily reflect those of the Department of Veterans Affairs or the Department of Health and Human Services.

PII: S0885-3924(09)01144-0

doi:10.1016/j.jpainsymman.2009.07.011

Journal of Pain and Symptom Management
Volume 39, Issue 3 , Pages 507-514, March 2010

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