What Do You Want Us to Know?: Learning From Life Stories to Improve Veterans’ Healthcare Experiences

Abstract

My Life My Story (MLMS) is a national Veterans Health Administration (VA) life story interview program that aims to provide more humanistic care for veterans by focusing on the patient as a person. Our project took place at the Pittsburgh VA Healthcare System and had 3 main goals: (1) describe themes that emerge in MLMS interviews from the prompting question, what do you want your healthcare provider to know about you?; (2) identify topics of importance to veterans and suggest ways for healthcare providers to explore them; and (3) foster a culture at the Pittsburgh VA that places not only the health but also the personal triumphs, hardships, and aspirations of veterans at the center. Veterans provided verbal consent to have their previously recorded stories used in this study. Stories were coded and then analyzed for patterns and themes. A total of 17 veterans participated in our study. Themes that emerged from the stories include (1) Early Hardships; (2) Economic Disadvantage; (3) Polaroid Snapshots; (4) Around the World; (5) Haunted by Combat; (6) Life-altering Moments; (7) Homecoming; (8) Romantic Beginnings & Obstacles; (9) Inequity across Gender & Race; and (10) Facing Mortality. This study's findings underscore the need to address the traumas associated with military service, as well as the challenges faced with re-integration into civilian life, when working with veterans. The MLMS interviews explored in this study can help clinicians identify topics of importance to veterans, strengthen their relationships with their patients, and improve the care that veterans receive.

Introduction

My Life My Story (MLMS), a national Veterans Health Administration (VA) life story interview program, focuses clinicians’ attention on the human beings behind their charts and diagnoses. Sharing life stories is one of the most effective methods to describe a person's unique perspective, key relationships, values, and aspirations (1). MLMS started at the VA in Madison, Wisconsin and has since spread to scores of VA hospitals across the country.

The project entails an initial semistructured interview with a veteran about their life. The basic, prompting question for all interviews is: what do you want your healthcare provider to know about you? (2). Interviewers, who can be any healthcare provider, trainee, or volunteer, are trained to follow the veteran in whatever direction they lead. The interviewer then writes up the story in the first person, with the following aims: maintain a nonjudgmental tone; capture the voice of the veteran; and accurately reflect the content of the interview. Once the veteran approves the story, the final version is returned to the veteran and entered into the patient's electronic medical record.

The goal of MLMS is to provide more humanistic care by looking at the patient as a person, rather than a disease (2). A 5-year postimplementation study of the MLMS project showed that a majority of providers found reading life stories a valuable use of clinical time and helped them provide more personalized, patient-centered care (3). Acknowledging the patient as a holistic individual empowers that patient to play an active role in their care (4–6) and has been shown to improve patient experience, patient-provider trust, and health outcomes (5,7–9).

Healthcare providers have long decried the increasing “corporatization of medicine,” the supplanting of traditional humanistic values with “the principles of depersonalized mass production” (10,11). MLMS was conceived as an initiative to counter this trend and to re-establish patients and their unique perspectives as the moral center of the healthcare universe (12). As the largest integrated health care system in the United States established to honor the sacrifices of veterans, the Veterans Health Administration (VHA) is uniquely equipped to lead such an initiative (13). Since ∼50% of healthcare providers and 70% of US physicians receive at least some professional training within the VHA (1,14), the MLMS program has the potential to change the culture of medicine nationwide (15).

Our project took place at the Pittsburgh VA Healthcare System and had 3 main goals: (1) describe themes that emerge in MLMS interviews from the prompting question, what do you want your healthcare provider to know about you? (2) identify topics of importance to veterans and suggest ways for healthcare providers to explore them; and (3) foster a culture at the Pittsburgh VA that places not only the health but also the personal triumphs, hardships, and aspirations of veterans at the center.

Methods

All veterans who received primary care through the Pittsburgh VA and who had participated in the MLMS program as of January 1, 2021, were eligible for inclusion in this study. Veterans provided verbal informed consent to have their stories analyzed thematically without disclosing any identifying information. This project was designated by the Pittsburgh VA IRB as a quality improvement initiative.

At the time that the study began, in-person interviews had already been conducted, recorded, and entered into the electronic medical record under the note title, “My Story.” The My Story notes of consenting veterans were scrubbed of any identifying information, including names and birthdates, before being analyzed by separate members of the study team. The study team deliberately chose a small sample size in order to determine the feasibility of coding life story transcripts. Based on previous qualitative studies with veterans that employed sample sizes ranging from 9 to 26, the team initially contacted 25 veterans and deemed a sample size within that range to be viable for the current study (9,16–18).

Three of the authors separately coded 5 interviews and then met to compare codes. Coding processes, definitions, and categories were discussed in a constant comparison approach, and a final codebook was developed in an iterative fashion and reapplied to all interviews (19,20), the interviews were divided evenly among these 3 study members. The coded data were then reviewed to identify patterns and themes.

Results

Of the first 25 veterans contacted, 17 consented to be enrolled in this study, of whom 16 were men. The remaining 8 veterans had died since having their stories recorded. Demographic information reported here comes solely from how the veterans identified in their stories. No additional demographic information was collected. The key themes that emerged from the interviews are as follows.

Early Hardships

From early ages, most veterans suffered severe hardships of different forms: the death of a parent, as well as abuse or abandonment from a parent, featured prominently. One veteran spoke of his father's horrific workplace injury: “I was about five or six years old when my father got injured … he got crushed somehow in a machine. He was sent to the hospital, and it went downhill from there. In those days, they didn’t take care of you.” One veteran spoke of the abuse inflicted on him by his mother while growing up—“If child abuse was a thing back then, my mother would be in jail”—while another veteran was left with the responsibility of caring for his younger brother when his mom abandoned them. The only veteran who identified as Black acknowledged the challenges of maintaining a biracial household in America during segregation: “I was adopted because I was born to a white mom and a Black dad.”

Economic Disadvantage

Many veterans discussed growing up in economically disadvantaged households. One veteran provided a vivid account of his childhood during the Depression: “I grew up in the poor days, during the Depression … in those days people would order coal to heat their houses. They'd order it and it'd get dumped out on the sidewalk.” Another veteran also spoke of his childhood during the Depression: “We made ends meet. We never went on relief. I can’t believe that, now that I’m old and know better. Why didn’t my mother go on relief? She was too proud.” Many veterans interviewed grew up after the depression and described their poverty in simpler terms: “I was just a poor farm boy.”

Polaroid Snapshots

Veterans provided striking snapshots of historical events. We get a glimpse of the devastation from the Blitz during World War II: “We sailed over on the Queen Mary and landed in Glasgow, England. There was bombing every night. Buildings and factories and homes on fire every night.” We see the changes on ordinary Vietnam citizens brought about by the Americans during the Vietnam War: “When I first got there, there was no war. [The farmers] were some of the nicest people I had ever met. I remember women in the rice paddies with babies strapped on their backs. When more … Americans came, I watched them treat the Vietnamese people like second-class citizens—like dogs—especially the women.” From Vietnam, we travel back to America to see how Americans are responding to the war: “After I got out of the service, there was a lot of discrimination against Vietnam vets. When we came home through the L.A. airport, there were protesters with signs whipping eggs at us. We told a cab driver we were just back from Vietnam, and he kicked us out of his cab.”

Around the World

Some of the brightest memories for veterans were the exotic locations they got to visit while serving. One veteran was sent to the Mediterranean and visited the isle of Capri while there: “We walked down 50 to 60 steps and got into a wooden boat, which then took us inside the mountains. The blue grotto was about 150 feet deep. Water was crystal clear. When sunshine hit the water and turned the water blue, it was like magic.” Another veteran, very young at the time he joined the service, recounted his best memory while serving: “I saw my first soccer game in Rio and went to the Copacabana beach, which was topless. I was like a kid in a candy store.”

Haunted by Combat

Veterans painted scenes of their terrifying and life-threatening encounters while serving. One veteran described, with the sharpness and horror of a nightmare, his memory of crawling through an enemy cave in Vietnam: “I came around a dark corner and there was a North Vietnamese soldier sitting there. He was already dead, but I didn’t realize it and shot him 4 times. It scared the hell out of me. There were rats in there running up and down your arms, and I got bit several times by scorpions.” Another veteran spoke of his arrival in Haiti during the 1994 US invasion, where he witnessed “a 9-year-old boy starve to death. His hair was almost orange. The doctor told us his body was eating the nutrients from his hair.”

Life-Altering Moments

Some veterans took the interview as an opportunity to recount life-changing experiences. One veteran described the circumstances that led him to save a man's life in Vietnam: “It was 100 degrees that afternoon, and we went down to the river to clean off. All of a sudden, Bob fell over into the fast-moving river and got swept away over the rapids. I was already back up on the bridge, so I took off all my clothes and jumped off the 100-foot bridge bare naked. He was bobbing up and down like a corkscrew. I swam about 200 yards and finally caught up to him … I thought he was dead and started CPR.” Other veterans described more subtle personal transformations: “Over time, I got into some trouble with females and drugs. I was homeless, went to jail. When I went to the penitentiary for three years I really grew up. I had that time to think and get myself together. I got my GED in there.”

Homecoming

Homecoming featured prominently in many of the veterans’ stories but ranged widely in its impact on the veteran. Two veterans described joyous encounters with their families after an extended time away: “I took a cab from Pittsburgh to Uniontown, went through the back porch … and said, ‘hey, what are we having for dinner?’ My mom was all kinds of happy to see me. My sisters too. They were hugging me, laughing, crying.” Not all veterans received such gracious and welcomed greetings. One veteran recollected running “into my first hippies in Oakland, CA on my way home from Cu Chi. Three men and one woman armed with eggs and tomatoes.” Several veterans reflected on the uncertainty and change they encountered once home and attempting to transition back into civilian life: “After the service, I didn’t know what I was gonna do with my life. So, I picked construction.”

Romantic Beginnings & Obstacles

Veterans talked about their first encounter with their soon-to-be spouse. One veteran described the first time he saw his future wife: “My best bud said to me, ‘my radar tells me there's two girls coming on Craig Street.’ Sure enough, these two girls come walking down Craig Street. One of them was Charlene … we got married four to five months after she graduated high school.” Another veteran said, “I had a girlfriend, my next-door neighbor. When I was in Texas, I got lonesome, and I called Agnes, and she came down on the next bus, and we got married by a captain.” After outlining how they met their partners, some veterans went on to describe their dramatic separations: “Everything was okay until 1975. [My wife's sister] was dating this guy dealing heroin. [My wife] thought it was crazy when I shot him. Our divorce was finalized in ‘76.” Other veterans described heartbreaking accounts of infidelity: “[My wife] got a job with … a maximum security prison in Waynesburg, PA. She fell in love with an inmate while out there, a couple months younger than [our son].”

Inequity Across Gender & Race

Out of the 17 veterans interviewed, only one identified as female, and she referred explicitly to gender discrimination while serving. Despite consistently outperforming her male peers, she was still given mundane tasks to complete: “I remember one mess sergeant asked me to serve cake out of all things.” She voiced that her ability to excel in the military was limited because of her gender: “I stayed with the Army for ten years, but it was obvious that I wasn’t being promoted because I was a woman. All these new men would come in, and I would be the one teaching them. I had more experience, and I was so good at what I did that it made them insecure.” Three veterans discussed racial discrimination. One veteran reflected on the military's discrimination against minority communities: “The thing that made Vietnam stick into my head most was how the villagers were treated just because they were shorter and their skin was brown. When the military comes, it always brings the racism with them.” The only veteran who identified as Black recounted first-hand racial discrimination while serving: “There were these guys from Indiana—white guys—and when we were walking back to the barracks, one of them said, ‘last one in is a N-word!’ I broke the bones in my right hand from punching him.”

Facing Mortality

While much of the content of the interviews described concrete experiences and people, veterans also actively reflected on their lives in more abstract ways. When veterans chose to discuss their health, they often did so in a way that demanded a level of self-reflection. One veteran described his alcohol use disorder with a great deal of regret: “My worst problem was getting into drinking the way I did. That's how I got here. If only I had used my head. If I had to do it over, I wouldn’t do it. I would buy tons of water and pop and drink that all day.” As veterans discussed the state of their health, they confronted death and their fears surrounding it, revealing a high degree of vulnerability: “I’m afraid. I’m going downhill fast. Am I definitely going to be ready? I’m going to try.”

Discussion

One of the major aims of this study was to describe significant themes in a set of MLMS interviews in order to help clinicians gain a better appreciation for veterans’ most meaningful life experiences. Three themes—Homecoming, Haunted by Combat, and Life-altering Moments—stand out as especially unique to veterans and underscore how the interviews explored in this study can guide the way that clinicians conduct their social histories with veterans.

The theme of Homecoming was remarkable for its wide-ranging responses, suggesting that veterans face a wide array of challenges when seeking to re-integrate into civilian life. The VA acknowledges some of the struggles a veteran might face when re-adjusting to civilian life, such as re-establishing a role in the family, applying and interviewing for a civilian job, and creating a new social community (21). While the VA encourages veterans struggling with re-adjustment to seek mental health support (21), it is unclear to what extent nonbehavioral health providers feel comfortable broaching this subject. We suggest that healthcare providers address re-integration during the veteran's earliest health appointments after returning from service. This study demonstrates that raising the issue in an open-ended way, such as “tell me about your feelings coming back home,” can elicit a great deal of knowledge about the veteran's attitudes and needs. Curiosity of this kind can demonstrate empathy, cultivate trust, and ensure that the onus for seeking help does not fall solely on the veteran.

The themes of Haunted by Combat and Life-altering Moments highlight the traumatic experiences that veterans endure, including those that are unique to service and often inaccessible to most civilians (22). Our study's findings demonstrate that veterans want their providers to know about the trauma they’ve suffered. Eliciting and processing a thorough trauma history with a veteran requires extensive training in trauma informed care in order to be safe and therapeutic for both patient and provider (23–26). MLMS does not replace an evaluation by a trained behavioral specialist. MLMS does, however, offer a means for providers to listen to, record, and read stories without passing judgment. Bearing witness to veterans’ experiences in this way can help advance trauma informed care among all providers and consequently increase the sense of trust between patient and provider.

The remaining themes provide further instruction on how to navigate the patient encounter in a way that will help strengthen the relationship between veteran patients and clinicians. For example, honing in on the themes Polaroid Snapshots and Around the World can serve as helpful aids for providers who seek to establish a deeper rapport with veterans. Broaching these topics will serve as reminders for patients that their providers see them as unique and whole individuals, as opposed to lists of medications and diagnoses. At the same time, Romantic Beginnings & Obstacles and Facing Mortality are themes common to all patients and stress the importance of not overemphasizing veterans’ particular hardships or adventures at the expense of maintaining a neutral and accepting environment.

Limitations & Future Directions

The data in this study were extremely varied because we were dealing with one of the most nonconforming topics, life stories. A much larger number of stories would be needed not only to achieve anything close to thematic saturation but also to add depth to key themes. For example, the theme of Inequity across Gender & Race emerged from the stories of 4 participants, only one of whom identified as Black and one of whom identified as female. The vivid stories of these 2 veterans raise concerns about pervasive racial and gender discrimination experienced by minority groups in the military.

There is a clear disparity in the number of stories collected from minority groups and the growing trends of veteran demographics (27). In order to enrich our understanding of the experience of veteran minorities, further studies on MLMS would benefit from larger sample sizes. Special care should be taken to include veterans with diverse racial, ethnic, and gender identities. One strategy to bridge this gap is to hold care team discussions to address possible bias that occurs when selecting MLMS interviewees. In addition, live storytelling events that highlight minority veterans’ stories, when paired with structured reflection, can help bring underrepresented veteran voices to the fore.

Conclusion

The current study highlights the effectiveness of the MLMS program as a tool for identifying topics of importance to veterans. Through the exploration of these themes, we provide specific areas that VA healthcare providers should focus on in order to foster a more inclusive and understanding healthcare experience. We hope that clinicians can use insights from this study to strengthen their relationships with their patients and improve the care that veterans receive.

The views and opinions expressed in this article are entirely the authors’ and do not necessarily reflect the official policy or position of the Department of Veterans Affairs or any agency of the US government.