Lessons From the Dead
Why investigating death means saving lives
Carolyn Cumpsty-Fowler, PhD, MPH ’96, remembers five children who never had a chance to grow up—and how they changed her life.
At the time, she was in her 20s, a neurosurgical nurse at Groote Schurr hospital in Cape Town, South Africa, and part of a team researching clinical factors that could improve survival of children with traumatic brain injury. The most severely harmed were children struck by cars while crossing the road or playing in the streets. Roughly 70 percent of the victims who died never reached a hospital, while others were admitted with catastrophic injury. One of the young nurse’s duties was to counsel parents when a decision was made to terminate life support.
In September 1984, she reached her limit. After witnessing the anguish of five families in six days, she realized her research was chasing the wrong answers.
“I walked out of the intensive care unit that Friday night with the neurosurgery professor who was my adviser and told him, ‘Nothing we can do in the hospital is really going to make a difference for these children. We’ve got to stop these deaths. We’ve got to prevent them.’ And he basically said, ‘Do it.’”
Cumpsty-Fowler changed the focus of her study from injury recovery to injury prevention. Eventually her doctoral work became the basis of a successful, developmentally appropriate pedestrian safety program that she and traffic safety colleagues implemented throughout South Africa.
Now an assistant professor in the Johns Hopkins School of Nursing with a joint appointment in Health Policy and Management at the Bloomberg School, Cumpsty-Fowler serves on the Baltimore County Child Fatality Review Team, an interprofessional group she helped create. Her husband, David Fowler, MBChB, MMed, is the chief medical examiner for the state of Maryland.
Together, the couple developed a course at the University of Baltimore, Forensic Medicine and the Public’s Health, that illustrated the many ways that death investigation and public health professionals’ use of forensic data can impact health, including reducing preventable death in children.
A careful reading of individual deaths, they contend, can make life safer and healthier for all.
The Fowlers belong to several generations of researchers who have gained inspiration from the work of an injury prevention pioneer whose legendary career was launched in the break room of the medical examiner’s office.
Back in the 1960s, Sue Baker was working toward her MPH at the School when she decided to examine the relationship of automobile accidents to chronic diseases such as alcoholism. Her idea was to compare the autopsy records of drivers who were responsible for their fatal crashes with those of drivers who were merely victims.
She found a willing partner in forensic pathologist Werner Spitz, then Maryland’s deputy chief medical examiner.
“Before Sue, no one had ever suggested or thought of using files of people who had sustained severe injuries and died, then analyzed them and thought, ‘Well maybe this can be changed or prevented,’” Spitz recalls. “Nowhere in this country was that material ever touched. It filled up the drawers and the filing cabinets and there it stayed, collecting dust—until Sue brought it back to life.”
In the early days, before she had her own office, Baker would pore over records at a big square table in the room where residents changed out of their scrubs and dictated notes from their autopsies.
“I had big ears and lots of questions, and they were nice about answering them,” recalls the 82-year-old Baker today. “They helped me understand what I was reading in the reports. Although I was pre-med in college, and had taught anatomy and physiology to student nurses after graduation, this was a whole new world with its own vocabulary.”
To identify cases to study, she worked her way through ledgers where cases were entered with numerical codes to identify the cause of death. Looking into the choking risks that balloons posed to children, for instance, she might search the code assigned for choking on objects as well as the one assigned for choking on food. Then she would pull the manila folder files that supplied details of the autopsy findings, the toxicology findings and the police report. (Eventually, in that case, she identified hot dogs as the leading cause of childhood choking deaths.)
Spitz remembers Baker quietly gathering data on the adequacy of medical care received by 33 drivers, passengers and pedestrians who died at hospitals following severe abdominal injuries in motor vehicle crashes. Her research showed that half of the deaths may have been prevented by proper diagnosis and prompt treatment, leading to the effort to transport such patients to major trauma centers rather than local hospitals. Spitz was an author on that early study, as well as on papers on highway safety and alcohol published in The New England Journal of Medicine and JAMA.
“Sue was like a paper mill, publishing something every few months,” he says. “Not only did she need that, but we forensic pathologists needed to show the community of physicians and institutions of higher learning that there is something to be looked at in the medical examiner’s office. It’s not just a place where you cut up bodies.”
Over the next four decades, Baker published more than 250 papers, most of them spurred by data from death records. In addition to helping secure mandatory child safety seats in cars and graduated driver’s licensing for new drivers, her research also led to ways to decrease fatalities in aviation and house fires, and to reduce incidents of carbon monoxide poisoning, drowning, childhood asphyxiation and falls among the elderly.
Along the way, she also founded the nation’s first injury control research center to promote injury prevention as a scientific discipline. The Johns Hopkins Center for Injury Research and Policy (CIRP), which celebrated its 25th year in 2012, works to reduce injuries through research, education, policy and practice.
In 2010, Baker became the first injury control researcher to receive the Frank A. Calderone Prize in Public Health, one of the highest honors in the field. And this year the National Association of Medical Examiners established an annual award in Baker’s name to recognize research that demonstrates the greatest potential for public health impact.
The award is a key feature of what chief medical examiner Dave Fowler calls “the Sue Baker Wall” at the state’s $54 million forensic medical center. Under his leadership, a staff of 15 forensic pathologists performs roughly 4,300 autopsies a year as part of the state’s investigation into any death occurring from violence, suicide or casualty, or in any other suspicious and unusual manner. Also reviewed are sudden deaths of people in previously good health who die unattended by a physician.
Nothing, perhaps, has proved more important than using such death records to protect children. In the 1970s, Baker gathered data that showed how infants in their first six months of life had a significantly increased risk of dying in a car crash because their mothers held them in their arms or laps. Evidence from the grim records she read contributed to the policy changes that require kids to ride in car seats today. From 1975 through 2008, child restraints saved the lives of an estimated 8,959 children under the age of 5, according to the National Highway Transportation and Safety Administration.
In the early 1980s, Andrea Gielen, who now directs CIRP, found herself using these data as a new School alumna working at the Maryland Department of Health and Mental Hygiene to create the state’s first child passenger safety program.
“I realized I found my passion,” says Gielen, who studied with Baker. “[Injury prevention] combined so many elements: studying risk and protective factors, educating the public and conducting community advocacy to get the law on the books and programs in place to make sure it was effectively implemented.”
For the past 15 years, Cumpsty-Fowler has served on national and state child death review committees as well as on the panel for Baltimore County. In Maryland, 24 teams cover the state’s counties and Baltimore City. Composed of representatives from the medical examiner’s office, law enforcement, emergency medical services, social services, schools, pediatrics and public health, the groups review all cases of sudden and unexplained deaths.
In Maryland, the most common causes of death in children over the age of one year are motor vehicle crashes, homicides and suicides, according to the DHMH. For infants between one month and a year of age, the leading cause is related to sleep environments and includes sudden unexpected infant death, accidental suffocation and strangulation.
For the past several years, Cumpsty-Fowler has worked with pediatrician and child abuse expert Scott Krugman, now chairman of Baltimore County’s child death review panel, to educate the public and health professionals about safe sleeping environments for infants. Because research shows that babies who sleep in their parents’ beds are 20 times more likely to suffocate than those who sleep alone, Krugman and Cumpsty-Fowler are determined to change social norms and make bed sharing with young infants unacceptable.
“Most infants in Baltimore County who die, die from preventable sleep-related [causes],” Cumpsty-Fowler says. “Most were in an adult bed.” She says suffocation can occur if a parent rolls over on an infant or a baby gets trapped under a pillow or caught between the bed and the wall. But death can also come merely from lying so close to a parent that there is only a small pocket of air for the child to breathe. When an infant lacks the motor skills to roll over or shift position, re-breathing the same air, increasingly filled with exhaled carbon dioxide, can lead to oxygen deficiency and death.
Franklin Square Hospital, where Krugman directs the department of pediatrics, now requires new parents to sign statements that they have received counseling about safe sleep before leaving the hospital with their newborns. (The Johns Hopkins Hospital has similar requirements for new mothers.)
Dave Fowler has pursued another avenue toward safe sleep. At the request of Joshua Sharfstein, secretary of Maryland’s Department of Health and Mental Hygiene, he reviewed pathophysiological evidence of sudden unexplained infant deaths as part of a team of experts looking into the safety of crib bumpers.
Next June, Maryland will become the first state to ban the manufacture and sale of this padding, which is intended to cushion babies from injuring themselves on the crib slats. “Crib bumpers don’t prevent any substantial injuries. Limbs are rarely entrapped and even in those situations the worst that can happen is minor bruising,” says Fowler. “There is no benefit and there is a substantial risk.”
More than two dozen baby deaths across the nation have been attributed to bumper pads in the last 20 years, and Maryland’s records show one child who was asphyxiated. “A brand new child is ‘shifting’ about half an ounce of air, whereas an adult shifts about two or three quarts with each breath,” Fowler points out. “As an infant, you don’t actually have to have your face up against anything. You can be close to a soft toy, a blanket, a bumper, edge of a bassinette and you can breathe out the oxygen in that area until it won’t sustain human life.”
Fowler calls pediatrics one of the most challenging areas in forensic pathology. “When you have someone who has been shot multiple times or been in a motor vehicle collision, the cause of death is usually fairly apparent. But when you’ve got a pediatric case—a young person who dies suddenly and unexpectedly, who was normally previously healthy, it is much more challenging.”
Such cases sometimes disappear in the deluge of injuries afflicting the nation. According to the CDC, more than 180,000 Americans will die this year from injuries sustained in such events as fires, vehicle crashes, intimate partner violence, drowning, drug poisonings and falls.
As medical examiners collect evidence on new threats, such as emerging infections or unsafe products, the injury prevention researchers aren’t far behind.
“In this country, injury data often come from forensic investigation and death certification,” says Carolyn Cumpsty-Fowler. “The better your relationship with the investigators, the more likely you are to get at the real heart of the information.”
And the facts of a tragedy remain critical for finding the path toward prevention. Sue Baker remembers poring over the case of a teenager who committed suicide in the early 1980s by overdosing on anti-depressant pills brought into the house by her mother’s boyfriend. At the time the girl had just broken up with her own boyfriend and was feeling distraught.
“Today that young girl might be coded as suicide from a drug overdose—or whatever was on the death certificate—and people might miss the details of the incident,” Baker notes. “It’s gotten so easy to ‘spin the tapes,’ as we say, and just look at the [computerized] tables for the findings and analyses.”
Instead Baker read the suicide note and the investigators’ records. They pointed to another problem that demanded public attention: Teenagers were abusing adult medications. Baker began imagining another research paper.