Their lives upended in a second, trauma survivors find that regaining their physical health is just one part of recovery.
His shoes were right where he had left them.
The left one on the floorboard. The right still on the Hyundai’s gas pedal, which had been mashed to the floor when he passed out—the result of a concussion suffered earlier in the evening in a supposedly minor collision. In a scene reminiscent of what Lawrence “JR” Black Jr. calls “cartoon physics,” his 6-foot, 2-and-a-half-inch frame had been shot out of his shoes at over 100 miles per hour, ripping out the steering column as he exploded through the car’s windshield, his mangled body slamming back to Earth some 90 feet away from the obliterated vehicle. The brutal impact after a brief moment of flight shattered 30 bones, tore his femoral artery and lacerated nearly every internal organ. It was 3 a.m. on February 7, 2009, along an obscure, frozen part of Maryland Route 32. And 26-year-old JR Black lay dying.
When people who have suffered traumatic injuries
arrive at a trauma center, surgeons focus exclusively on the myriad physical issues that can kill the patient within minutes.
When looked at from that binary “lived/died” perspective, trauma survivorship has improved exponentially through the years—thanks in part to the lessons of war. The information gleaned from treating devastating battlefield injuries as far back as the Civil War has filtered back to civilian surgeons. Advances in technique, equipment, transportation and coordination of care in trauma centers have combined to the point where less than 10 percent of trauma victims who make it to a hospital die from their injuries.
Numbers like that have some experts now viewing trauma more as a chronic disease than a fatal illness. Or, put another way, the question is moving from, “Can trauma patients survive?” to “Can they thrive post-trauma?” Experts point to cancer, where major clinical and research developments over the last 20 years forced clinicians to redefine what they considered to be “positive” outcomes beyond mortality. In the world of cancer care, quality-of-life issues such as linking up with support groups, finding effective pain management and dealing with psychosocial adjustments are now common clinical conversations, all aimed at helping patients to enjoy productive, fulfilling lives post-treatment.
That’s a discussion that many trauma surgeons didn’t even realize they needed to have, until a public health researcher and her team spoke up in a voice too familiar and well-informed to ignore.
The stars told the young soldier he was still alive.
Just moments before, Ryan Christian Major had, under the cover of Iraqi darkness to avoid snipers, been darting through narrow streets of sand and stone. His platoon’s objective on that November evening in 2006: to eradicate a cell of bomb builders nearby. A small intersection loomed. Major took two steps into it.
And suddenly he was staring up at the heavens.
The remotely triggered improvised explosive device tore Major’s right leg from his body, hurling the rest of him over a 6-foot wall and into someone’s yard. Motionless from the neck down, Major never lost consciousness, and even tried to say his goodbyes.“Tell my mother and brother that I love them,” Major implored one of his buddies, who reacted in a way Major would later say was perfectly appropriate.
The soldier slapped Major’s face.
“Don’t put that on me!” growled his comrade, exhorting the gravely wounded soldier to stay conscious… and alive. “Tell ’em yourself!”
It could be a bad pun or karmic poetry.
Either way, Ellen MacKenzie, PhD, is the first to admit she discovered trauma research quite by accident.
As a student in the 1970s, MacKenzie, a biostatistician by trade, was studying Susan Baker’s work. Baker, MPH ’68, a professor of Health Policy and Management (HPM) at the School, had developed the Injury Severity Score, or ISS, which would become the standard measurement for predicting injury mortality. MacKenzie wondered if similar scales might predict non-mortality outcomes such as the ability to perform everyday activities. Her advisor, pioneering public health researcher Sam Shapiro, told MacKenzie, “I’m sure there’s a lot of research out there.”There wasn’t.
Shapiro, an HPM professor, quickly helped her secure a Robert Wood Johnson grant. Of such efforts careers are born, and, in the case of MacKenzie and colleagues, clinical practice changed. MacKenzie spent much of the ’80s burrowing into the world of trauma treatment. Her work focused on quantifying all aspects of trauma care, from the cost of treatment to how pre-existing disease affected the length of hospitalization.
But those findings were the end product of something far more important and lasting. MacKenzie’s true genius was building research partnerships with frontline trauma surgeons and other trauma-oriented physicians—so much so that she spent a sabbatical in 1995 at University of Maryland’s Shock Trauma Center.
“Here I was doing a lot of work in trauma, yet I’m not a clinician, I’m not a survivor, I’m a biostatistician,” says MacKenzie in explaining her choice for the yearlong sabbatical. “And so I wanted to spend time with trauma surgeons to learn what they do, to be closer to them. I went on rounds with them every morning, I sat through surgeries … I really became part of that family and got access to a lot of information and got a better feel for their work.”
MacKenzie realized that the high-pressure, high-volume work of trauma surgeons left them little time for research. They understood the importance of outcomes research but needed a colleague who could find the grants and carry out the work.
It wasn’t easy—trauma, despite being the fifth leading cause of death, has never had a Lance Armstrong-like celebrity spokesperson to raise awareness and funds. But MacKenzie was motivated. She recognized that trauma surgeons had the power to move the needle, if she could spur them into action. Her opportunity was a study that she and her colleagues called LEAP, as in the Lower Extremity Assessment Project. LEAP was one of the first multicenter trauma studies, featuring 601 patients drawn from eight Level I (highest-level) trauma centers.
With no existing national consortium for trauma research, MacKenzie needed plenty of charm and persistence to organize some of the country’s top orthopedic surgeons to design and carry out the study.
LEAP’s ostensible goal was determining whether leg amputation or limb salvage provided the best functional outcomes. But, as MacKenzie notes, “there’s no way you could ethically do a randomized control trial, where some people would get their leg cut off and some wouldn’t, so we had to convince ourselves and others that doing an observational study with trauma centers that handled a lot of both patients would answer the question.”
Working with Carolinas Medical Center trauma surgeon Michael Bosse and orthopedic surgeons from seven other major U.S. trauma centers—as well as her own team led by researchers Melissa McCarthy and Renan Castillo—MacKenzie published initial results in 2002 in the New England Journal of Medicine that shook the world of trauma orthopedics. It turned out that neither group fared well, for reasons that went far beyond their initial injuries and surgical treatment.
The study, which included asking trauma patients to self-assess how they were faring since their injury, found that barely half returned to work after two years. Some of their explanations for poor outcomes—poor social support networks, low self-confidence to resume life activities, pain and lingering mental health issues including depression, anxiety and post-traumatic stress disorder (PTSD)—could well be addressed in the clinical setting, but had not been. The result: needless suffering for trauma victims.
“We learned that there were elements of the patient’s assessment of the outcome that we weren’t really appreciating well as orthopedic surgeons,” says Andrew Pollak, MD, professor of Orthopaedics at the University of Maryland School of Medicine and chief of Orthopaedics at the R Adams Cowley Shock Trauma Center. “[We’ve] looked for years at whether the fracture healed as the primary outcome measure. There’s no question it has to heal, otherwise everything else fails. But there’s a lot about patient satisfaction that’s driven by something else”—notably treatment of psychosocial concerns.
Stephen Wegener, a psychologist in Johns Hopkins' Physical Medicine and Rehabilitation Department, says LEAP was a case of the right messenger with the right message. He says trauma surgeons might have been less responsive to calls from mental health professionals to ramp up psychological services for trauma victims. Having that missive come instead from a recognized public health researcher deeply familiar with the demands and realities of trauma orthopedics proved far more effective.
Wegener, who began collaborating on several projects with MacKenzie post-LEAP, likens LEAP's findings to identifying an infectious disease for which an effective treatment already exists. "The results of the study came at a critical time; the Institute of Medicine had just issued its report ["Crossing the Quality Chasm"] calling for patient-centered care focusing on the psychosocial needs of patients and families," he says. "The psychological community had developed cognitive behavioral interventions that have potential benefit for the problems identified in LEAP. And there are interventions on the psychopharmacology side to work with PTSD, depression and pain."
Ellen MacKenzie and her team had defined the problem. Now they had to deliver solutions.
JR Black is healing, and he's not alone.
In the still room, his voice fills the air with a tale of pain and perspective. And ultimately, hope.
Seated around the conference table deep in a corner of University of Maryland's downtown medical campus are five other trauma survivors. Their faces register recognition, and appreciation as well, as Black discusses his physical travails—the day and a half of surgery after he was helicoptered to Shock Trauma, the fog of the medically induced coma, the shocking realization that every one of his extremities had been broken, the exhausting physical therapy that took his right knee from a virtually useless 28-degree range of motion to a nearly normal 123 degrees. His terrible thirst, unquenched for days because ventilators and liquids simply don't mix. As he shares his story, heads bob emphatically around the table. They've all been there, done that.
"I was ready to jump the guy watering the plants," recalls one of Black's young tablemates, whose body was decimated in a motorcycle crash. The line elicits a huge laugh from everyone including Black, but the room quickly turns somber again as he hits upon a universal truth for the assembled.
"I had some dark times after I got out of the hospital," Black tells his fellow survivors. "They don't tell you the easy part is when you're in the hospital. When I got out and was home, you have a lot of time alone with your thoughts and your 'new' body, looking different, covered in scars. There's something that plays on your mind. It's hard to have open wounds for such a long time. You feel like a leper."
For Black and the others around the table, sharing and overcoming those feelings is part of what the Trauma Survivors Network (TSN), which organized the meeting, is all about. MacKenzie's team helped the American Trauma Society (ATS) develop and launch TSN in 2006. From 2006 to 2009, MacKenzie was ATS president.
A CDC grant is allowing MacKenzie to evaluate TSN's implementation at the Shock Trauma Center. At its core, TSN connects survivors and their families with those who've suffered a similar fate, providing support along with resources so trauma victims can rebuild their lives.
A vital aspect of TSN is called "NextSteps." The self-management program grew from a similar amputee-targeted program called PALS ("Promoting Amputee Life Skills") that MacKenzie developed with Wegener. The programs share a belief that patients are the central players in their recovery, which can be enhanced by learning self-management skills. LEAP found that greater self-confidence is a major predictor of good outcomes; PALS and NextSteps are designed to teach participants how to take charge of their lives and their recovery.
A randomized trial showed that the eight-week PALS self-management program, which educates patients about their condition and allows them to track their symptoms and progress, reduced depression and improved function and outlook for those who received the training, with an important caveat: timing. "We found that people who were less than a year out from losing their limb did significantly better than those who started the program much later," says MacKenzie, now the Fred and Julie Soper Professor and Chair of the Department of Health Policy and Management.
PALS made MacKenzie realize that in order to reach patients with all kinds of support information in a timely manner, she needed a nationwide network. Getting trauma centers around the country to buy in and implement TSN could be that vehicle, an attempt to reach out and pull together trauma centers large and small, so they could promote and offer earlier psychosocial interventions.
For patients, TSN may serve as a bridge to long-term recovery. Many say they’re too drugged and disoriented while in acute care to even comprehend what support services they’ll need, and those who go on to inpatient rehab (just 30 percent of all trauma victims) generally aren’t offered routine psychological services.
“At [the rehab hospital] that was never addressed; all the talk was about physical rehab, ‘you’re going to see the PT, you’re going to see the OT,'” says 44-year-old Mike Mutchler, who, along with his stepdaughter and fiancée, was severely injured in a head-on crash in June 2009. His injuries required more than 15 surgeries.
“I was at enough of a level of consciousness when I was there that it would have been extremely helpful,” says Mutchler. “I’d go so far as to say I wouldn’t even make it an option; I’d require that a psychiatrist come down to talk with a patient, even if it’s just for five minutes, to determine what type of help you might need. Because everyone who goes through this needs something.”
The Trauma Survivors Network may be that first step. MacKenzie’s team is now studying its impact on outcomes, especially TSN’s use of support groups, self-management programs and peer counseling.
MacKenzie’s PhD student, Anna Bradford, says those data are vital. As a social worker, Bradford established and ran a trauma support and peer visitation group at Inova Fairfax Hospital for 15 years. Called “Rebuild,” it was a TSN-like precursor, and part of Bradford’s efforts included selling other area hospitals on incorporating the program.
“My gut said everything I saw was making a difference, but I didn’t have any data at all,” says Bradford. “So I’d go around to these various hospitals, tell them about the support work, and they’d say, ‘Oh, what a cool program. Tell me a little bit more about the research.’ And I’d go, ‘Excuse me?’ That’s why I went back to school, and that’s where Ellen comes in.”
Bradford is hoping the data will bear out what survivors like JR Black already know—that the opportunity to join with others in the trauma community will further healing. At the very least, says Black, such support could keep others from making the same seat-of-the-pants mistakes he made during his recovery—such as suddenly stopping his narcotic pain meds because of the side effects.
“I had been home a few months, and I decided I was going to stop ‘cold turkey’ and not tell anybody. Just sticking the medications in a tissue and hiding it in the recliner I was in because I couldn’t sleep in a bed then,” says Black, who was recovering at his parents’ Hagerstown home.
“That was the worst month and a half of my life. It was July, 90 degrees out, and I was sweating, then freezing, and depressed, constant mood changes, no one to talk to. It was nighttime and I couldn’t sleep, and the nerve pain was tingling so bad it kept me awake, screaming in the middle of the night.”
Despite the agony, Black, unaware that weaning himself slowly from the meds was the correct option, refused to relent. “I felt like [going back on pain meds] would start the side effects all over again. I just wanted to get back to ‘normal’ again. What I didn’t know at the time was that what I was doing could have killed me easily.”
Experiences like these gave Black, a longtime professional musician, the desire to become a volunteer recovery coach, someone who could reach out and counsel newly injured trauma victims. That’s a desire shared by everyone sitting around the table with Black. They’re all taking part in TSN’s volunteer peer-to-peer training, their freshly minted ID badges a symbol that Shock Trauma values the input these survivors will soon be giving to its patients.
Black has already sensed the good that can come out of sharing something so awful.
Sitting across from him is 19-year-old Nicole Lawrence, a Penn State University student who nearly lost her life last November when the car she was riding in with four other students was struck by a speeding vehicle near campus. The accident ejected one young woman from the car; Lawrence was pinned in the car for nearly a half hour, all the time tending to her unconscious friend who lay at her side. That friend would later die, and Lawrence struggles to this day over why she somehow survived, despite being seated directly at the point of impact. Black visited Lawrence while she was in Shock Trauma.
Looking her in the eye now, he tells the room, “I did go see Nicole in November. I remember you had a really good attitude. I remember thinking when I saw her, she’s going to be fine. She was really upbeat when I saw her. You can tell the people that are going to be fine within a couple of minutes of talking to them.”
He was right: Despite her ongoing struggles with PTSD and reconstructive surgeries, Lawrence returned to Penn State in just over two months. Doctors told her she might not make it, but Nicole Lawrence was in class eight weeks later. “Here were doctors telling me eight weeks before that I might not make it, and here I was eight weeks later in class,” she tells Black and the others with tears in her eyes. “That was a miracle.”
It’s those little miracles that have given Black faith—both in himself and others. In the 18 months since his wreck, he’s worked his way from wheelchair, to walker, to cane, to a 28-year-old’s familiar “What, me worry?” gait. Along the way, supportive medical professionals changed his world view. “When you go through trauma, so many people have to help you to get you back to where you are. Countless numbers,” he tells the group. “Before this happened to me, I was doing music, maybe it was the type of people you deal with in the entertainment business, but you get so cynical and bitter that everyone’s in it for themselves. I had no faith in people. But after this, I saw there really were good people, all the doctors and nurses and therapists. I wanted to be like that.”
In the TSN peer program that MacKenzie helped develop, Black has found his outlet, a way to bond with others and take fear out of an incredibly frightful journey. While music will always be a part of his life—he continues as a songwriter, even penning a few songs relating to his accident—he’s thinking about a career of helping others thrive after trauma, perhaps as a recovery coach or a social worker. “This is like a first step for me,” he says. “I would really have liked to have someone who had been through everything helping me to know what to expect. It’s an awesome idea.”
Ryan Major is thriving as well, though he’s had to climb his own personal Everest to get to where he is now. The four years since he first arrived at Walter Reed have been nothing short of a rebirth, a gradual reawakening of self-confidence that there can be a worthwhile life even after the worst trauma.
Like JR Black, Ryan Major, now a retired staff sergeant, found comfort in those he could identify with, in his case, fellow soldier amputees who moved forward with their lives. It wasn’t so much their words as their deeds that inspired him. A fish in the water before his injuries, Major resisted a Walter Reed therapist’s attempts to get him into a pool. “I was like, ‘I can’t do it.’ I couldn’t believe, in my situation, that I would be able to swim again,” says Major, who lives with his mother in Silver Spring, Maryland. The therapist then introduced him to “Jack,” whose name has been changed to protect his privacy. Jack had lost both his legs above the knees in Iraq. Now a triathlete, Jack displayed fluid movements in the water that astonished Major. “I saw him in the pool and he looked fantastic. I figured that, if he had been in the same situation I was in and could do it, then why don’t I just give it a shot? What the therapist told me, that I could swim, and which I totally denied… Jack showed me that they were right.”
The military’s long history in dealing with and closely following soldiers throughout their recovery is an area of great interest for MacKenzie’s team. That close follow-through is often missing in civilian treatment, where patients move quickly from highly structured acute care facilities to the home setting, frequently without getting proper physical and psychosocial rehabilitation.
MacKenzie’s team will examine the effectiveness of rehabilitation in both the civilian and military settings as part of a new cooperative agreement with the Department of Defense (DoD).
Last September, they received an $18.4 million grant from DoD to establish the Major Extremity Trauma Research Consortium (METRC) and address pressing issues in the initial care of patients with serious limb injuries. An additional $43.5 million award has been recommended for funding this fall. It will be used to expand METRC and address other priority topics in acute care and rehabilitation of trauma patients injured at home or in combat.
METRC will conduct research at more than 24 civilian trauma centers, as well as the four military treatment centers caring for the majority of service members injured in the line of duty, says MacKenzie. The data will be coordinated through and analyzed by MacKenzie’s group, which is also helping to design the clinical studies.
“I chose to push forward with my life. I’m a young guy with a lot to live for."—Ryan Major
“The initial studies include randomized control trials looking at promoting fracture healing and preventing major complications like deep infection and compartment syndrome [severe muscle swelling],” she says. “We will also be looking at long-term rehab issues. We’re proposing a trauma collaborative care intervention, a multimodal approach that addresses the needs of trauma patients as they transition back to the home and community. The intervention combines the TSN’s services, including NextSteps, adds training providers to promote TSN use, and makes available a ‘recovery coach’ who advocates for the patient and links them to services after they leave the trauma center.”
MacKenzie’s colleague from the LEAP study, Michael Bosse, chairs the consortium. A retired U.S. Navy captain, Bosse, the director of Orthopedic Clinical Research at Charlotte’s Carolinas Medical Center, notes that the cost of the research is high, but small compared to the economic loss from severe trauma injuries.
“Look at the disability rates; you take a guy in his 20s who gets a severe leg fracture. You don’t achieve maximum outcome because you don’t know what the gaps are, psychosocially or physiologically. So for the next 40 or 50 years the patient is disabled and on the public’s payroll because we failed to do as much as we could up front,” says the veteran trauma surgeon. “Those are the tremendous opportunities here regarding care of these patients.”
“It’s a very exciting moment for this field,” agrees Renan Castillo, PhD ’08, MS, an HPM assistant professor and MacKenzie’s deputy director on the project. “These studies are going to, hopefully, answer big questions. It’s not unreasonable to speculate that the METRC studies, like the LEAP study, that was designed to answer one question but ended up providing data for a number of other questions, will lay the foundation for additional studies. Ellen has shown she can bring the clinicians together, and has already successfully built networks like METRC. When you think of Ellen, you think of someone who can get it done.”
That’s the kind of mindset a soldier like Ryan Major can appreciate. One day removed from his first kayaking expedition on the Potomac, he’s a man in motion. The knowledge and care of his clinicians and therapists have him in a new pair of short prostheses without knee joints (“stubbies,” he laughs), and if he adjusts well to them, the next step is… a real step, in full-length prosthetic legs.
Mentally, he says he’s already adjusted. when asked if he’s in a good mindset, his youthful voice is strong and unwavering. “Most definitely. I chose to push forward and get on with my life. I’m a young guy with a lot to live for—family, friends and things I dream of doing.”