by Sheri Fink
Sometimes individual medical choices, like triage choices, are less a question of science than they are of values. In a disaster, triage is about deciding what the goals of dividing resources should be for the larger population—whether maximizing number of lives saved, years of lives saved, quality of life, fairness, social trust, or other factors. The larger community may emerge with ideas different from those held by small groups of medical professionals.
That was clear in Seattle and King County, where a public engagement exercise was held. Many participants thought it was unacceptable for medical professionals to withdraw life-sustaining care, as called for in many of the pandemic triage plans, in part because doing so would erode trust in the medical system.
Roger Bernier, a senior advisor at the US Centers for Disease Control and Prevention, which funded the exercise, said it is both possible and necessary to engage non-experts in these discussions. “They are the holders of our public values and are in the best position and in the most nonpartisan position to weigh competing values.”
However, this type of engagement is rarely sought. “I’m not sure we believe in democracy in America,” Bernier said. “We don’t make good use of the people. We don’t make good efforts to access public wisdom on public policy choices.”
In Seattle, members of the public at large were concerned that using survival statistics to determine access to resources might be “inherently discriminatory,” the project report said, “because of institutional racism in the health care system; if some groups (e.g., African Americans and immigrants) do not receive the same quality of care, then their rates of recovery and other survivability measures would be biased.”
More challenging than eliciting public input is using it, particularly when it reveals contradictory, divergent opinions. How should majority and minority views be weighted? And will policymakers cede authority over decisions? In 2009, the CDC gathered feedback on a proposed emergency vaccination program for a new strain of flu. General public opinion diverged significantly from expert opinion. However, by the time the information was collected, the vaccine policy had essentially already been made.
In 2012, the Institute of Medicine released an extensive report backing the notion that the public should be involved in the development of guidelines for dividing medical resources in disasters. The authors argued that Katrina and other cases had shown that while crisis conditions may justify limiting access to scarce treatments, medical providers have a duty to care for patients in emergencies, to treat them fairly, and to steward resources. An earlier report also addressed DNR orders, saying they were not useful parameters of triage decision making in disasters. The orders reflect foresight and personal preferences about end-of-life planning “more than an accurate estimate of survival.” Whenever crisis conditions involve limiting access to scarce treatments, the experts said, decisions should be made in ways that are transparent, consistent, proportional to the extent of shortages, and accountable.
Dr. Carl Schultz, a professor of emergency medicine and director of disaster medical services at the University of California at Irvine, is one of the few open critics of altering standards of care for disasters. He says the idea “has both monetary and regulatory attractiveness” to governments and companies because it relieves them of having to strive to provide better care. “The problem with lowering the standard of care is where do you stop? How low do you go? If you don’t want to put any more resources in disaster response, you keep lowering the standard.” It is also reasonable to wonder, once lower standards are codified, whether some policymakers, health-care executives, or clinicians might be tempted to apply them to non-emergent situations where resources are tight, such as when costs are a concern.
Others disagree. “Our goal is always to provide the highest standard of care under the circumstances,” Rear Adm. Ann Knebel told me in 2009, when she was deputy director of preparedness and planning at the Office of the Assistant Secretary for Preparedness and Response, Department of Health and Human Services. “If you don’t plan, then you are less likely to be able to reuse, reallocate, and maximize the resources at your disposal, because you have people who’ve never thought about how they’d respond to those circumstances.”
Both Schultz and Knebel make vital points. What will save the most lives in an overwhelming emergency probably won’t be refining how a set number of patients is triaged, essentially shuffling the same deck of cards so that different numbers and suits come up on top. What will save more lives will be doing everything possible to avoid having to deal the hand, by taking steps to minimize the need to compromise standards, and promote the ability to rebound as quickly as possible to normalcy. One of the greatest tragedies of what happened at Memorial may well be that the plan to inject patients went ahead at precisely the time when the helicopters at last arrived in force, expanding the available resources.
The failure to emphasize situational awareness in disaster response—maintaining the ability to “see” in the midst of a crisis—concerns some experts, including Dr. Frederick “Skip” Burkle Jr. After the attacks of September 11, 2001, he laid out ideas for how to handle the victims of a large-scale bioterrorist event. Those protocols, described in an academic paper, became key aspects of the Canadian pandemic triage guidelines and ultimately made their way into most of the other disaster standards of care plans. “I have said to my wife, ‘I think I developed a monster here,’” Burkle told me. What worried him was that the guidelines were often rigid, with a single set of criteria designated to be applied throughout the severe phase of an emergency. Rationing when rationing is not needed could harm the population. Burkle, by contrast, had stressed the importance of reassessing the level of supplies “sometimes on a daily or hourly basis” in a fluid effort to provide the best possible care and minimize the need to make such wrenching decisions.
In 2010 I visited Pune, India. The previous year, during an outbreak of H1N1 influenza, health officials had panicked. Worried about the spread of the illness, they restricted patients with flu symptoms to a small number of local hospitals. Those hospitals were quickly overwhelmed. A pediatrician, Dr. Aarti Kinikar, watched babies die because she did not have enough ventilators for them.
Triaging better was not enough for her. For years she had treated children in a public hospital where expensive resources were often in short supply. “God has given you the brain, just use it,” she liked to tell her students. “Just keep on thinking.” When the ventilators ran out during H1N1, she thought and she improvised. In the past, she had helped newborns with premature lungs breathe better with a therapy known as bubble CPAP, for continuous positive airway pressure. CPAP devices cost thousands of dollars, but Kinikar’s staff managed to patch together a homemade version out of a few dollars’ worth of plastic tubing and saline bottles readily available at the hospital. It seemed to work well on premature babies, and she decided, in the midst of the H1N1 crisis, to see what it might do for older babies with flu. “I didn’t know whether people will back me using a technique which doesn’t seem to have much scientific push,” Kinikar told me. The alternative seemed worse to her. “It was a decision between not doing anything and allowing the baby to die as against doing something and maybe keep your fingers crossed and let it work.”
When one baby with flu showed signs of improvement on a ventilator, she decided to try to wean him off the machine early and instead support his breathing with the improvised bubble CPAP system. The baby’s mother watched warily, but her son did well on the makeshift contraption. The ventilator was put to use to help another child. Over the weeks of the pandemic, Kinikar used bubble CPAP to support the breathing of hundreds of children at her hospital. Colleagues credited her quick thinking with saving lives.
Perhaps American health professionals, dependent on the highesttech gadgets, could learn something from Kinikar. While there is little financial incentive in the marketplace to develop low-tech, inexpensive medical goods for disaster preparedness, the US gove
rnment has made some investments. A recent federal grant was awarded to a company to create cheaper, easier-to-use ventilators. Already at least one firm, St. Louis–based Allied Healthcare Products, is marketing a line of ventilators specifically for use in disasters.
In the end, Kinikar-style thinking turned out to be the most important, life-saving aspect of what happened at Bellevue Hospital in New York after the generator fuel pumps failed. Volunteers formed a chain and passed fuel up thirteen flights of stairs to feed the generators manually. Swift improvisation prevented the backup power from cutting out, which prevented horrible choices from having to be made. Dr. Laura Evans’s patients were all maintained on backup power as evacuation of the hospital proceeded.
Hours later, climbing one of Bellevue’s long staircases, I passed personnel in blue scrubs carrying a baby in a transport incubator down to a waiting ambulance. Other staff huffed and puffed up the steps with supplies. Diesel fumes wafted into patient corridors. The situation balanced just on the edge of control.
With elevators out, the evacuation of the gigantic hospital took days, just as it had at Memorial. Two patients were kept for last. One was morbidly obese. He weighed around six hundred pounds—much more than Emmett Everett at Memorial. With the elevators out of order, staff members were very concerned about moving him. The other was, like patients at Memorial, extremely sick and fragile. His doctors were afraid he could die while being carried.
Nobody gave up hope. After the other patients were rescued, National Guard soldiers carried fuel up thirteen flights of stairs for several more days until the elevators could be operated. Doctors in the disabled hospital performed heart surgery on the fragile patient, and both he and the obese man were safely moved to another hospital.
Dramatic scenes like this do not occur often. But being in New York for Sandy was a reminder that terrible triage conundrums can arise anywhere, at any time, and that they have the power to change lives irrevocably. Across the country many hospitals in flood zones have electrical backup power systems in their basements. Others, in earthquake zones, were constructed before modern building codes. Others are simply situated in Tornado Alley. To the extent that protections and plans have been put in place since Katrina, recent events have often shown them to be inadequate or misguided. Life and death in the immediate aftermath of a crisis most often depends on the preparedness, performance, and decision making of the individuals on the scene.
It is hard for any of us to know how we would act under such terrible pressure.
But we, at least, have the luxury to picture in advance how we would want to make the decisions.
ACKNOWLEDGMENTS
DEEPEST THANKS TO ALL who shared their experiences and knowledge in interviews, listed in the Notes for each chapter, particularly individuals for whom the trauma of those five days resurfaces upon remembrance. Several in particular took a risk to tell what they did and why. They are brave, as are the others who spoke outside of the “cone of silence” so that those of us who have not yet faced the consequential choices described here could learn from them. This book also owes a great debt to the other journalists who pursued the story, as described in the Notes section and the book itself. Further, Memorial staff members and others who wrote memoirs and articles about their involvement in the events brought to light unique details and insights.
This book grew out of the magazine article “The Deadly Choices at Memorial.” The product of a collaboration between ProPublica and the New York Times Magazine, it benefited from not one but three key editors. First came Susan White, now at the helm of InsideClimate News, whose wise early guidance on structure and narrative carried over from the article to the book. The New York Times Magazine’s Ilena Silverman’s suggestions and edits always rang true and bettered my work. The news genius that is Steve Engelberg edited “Deadly Choices” with the energy of two people while also serving as managing editor of ProPublica. My ProPublica colleagues have been a source of inspiration. Other editors who read and improved the story included: Paul Steiger, Gerald Marzorati, Jill Abramson, Bill Keller, and Alex Star. Charles Wilson, David Ferguson, and Aaron Retica checked every fact, and Richard Tofel, David McCraw, and Loretta Mince had my back. ProPublica’s Krista Kjellman Schmidt, Jeff Larson, Dan Nguyen, Mike Webb, Lisa Schwartz, A. C. Thompson, and Robin Fields all made essential contributions; as did the Times’s Clinton Cargill, Joanna Milter, Patty Rush, Patricia Eisemann, and Matt Purdy; as well as Paolo Pellegrin, Macaulay Campbell, Stan Alcorn, and Bruce Shapiro.
Another wizard of an editor, David Baron, along with the exceptional staff of Public Radio International’s The World, provided an outlet to report on horrific triage dilemmas on the ground in Haiti after the 2010 earthquake and, with Patrick Cox, to explore medical rationing across countries and cultures, including the impossible choices made weekly in public dialysis units in South Africa. During the 2012 hurricane season, the New York Times Metro desk, ProPublica, and the Times-Picayune provided homes for reporting on what had and had not changed since Katrina. As this book neared completion, Julie Tate worked tirelessly to check facts and locate additional sources from afar.
Those who filled the margins of Five Days at Memorial in manuscript form with comments of exquisite insight and occasional blistering humor improved it greatly. Thanks to Nam Le, Susan Burton, Edward Broughton, Herschel and Adrienne Ruby Fink, Dr. Randi Cohen, Christine Kenneally, Paul Steiger, and Marian Moser Jones. Thanks to Harriet Washington for friendship and support.
The following individuals at libraries, archives, and news organizations were particularly helpful in locating historical material: Taffey Hall, archivist, and Bill Sumners, director, the Southern Baptist Historical Library and Archives in Nashville, Tennessee; Jim McCutcheon, production manager, Entercom New Orleans; Carl Lindahl, codirector, Surviving Katrina and Rita in Houston, Texas; Ann Hogg of the American Folklife Center, Library of Congress; StoryCorps’s Nadia Wilson (archive intern) and Tayla Cooper (senior archive director); Irene Wainwright and coworkers at the New Orleans Public Library; Greg Lambousy, director of collections, Louisiana State Museum; Janet Spikes, Dagne Gizaw, and Michelle Kamalich at the Woodrow Wilson Center library; from the NBCUniversal archives, Jaime Severino, Luis Aristondo, and Sade Craig; from the ABC archives, Lidia M. Guardarrama and Joy S. Holloway; CBS’s Ann Fotiades and Matt Danowski; and J. T. Alpaugh of Helinet Aviation in Van Nuys, California. For responding to some large public records requests and assisting with interviews, thanks are due to staff members of the Louisiana Attorney General’s Office, the US Department of Health and Human Services, and the United States Coast Guard. I’m also grateful to the many attorneys and public relations professionals who took the time to facilitate contact with their clients and provide contextual information.
Thanks to Andres Martinez and the New America Foundation’s Bernard L. Schwartz and Future Tense programs. NAF research associate Rebecca Rabinowitz relived Katrina moment to moment in parsing hours of WWL radio broadcasts. Olivia Wang ventured back with me to 1926 and 1927 at the Library of Congress. Faith Smith, Caroline Esser, Rachel White, Steve Coll, Shannon Brownlee, Nicole Tosh, Rebecca Shafer, Allison Lazarus, and the other staff and fellows bolstered my work in myriad ways over the past three years.
The Woodrow Wilson International Center for Scholars provided a much-appreciated base of operations in 2010, thanks to Lucy Jilka and colleagues. The Center’s relationship with the Library of Congress facilitated my research, as did Phillip Wilcox, who dug for instances of healthcare rationing around the world; Aamenah Yusafzai, who amassed a small library on euthanasia; and the helpful Ted Miles.
This work began when I was a freelancer teaching part-time at the Tulane School of Public Health, and my research benefited from the early support of Penny Duckham and the Kaiser Family Foundation’s media fellowships in health. Prior to that, the opportunity to work in the immediate aftermath of Katrina came by way of affiliation with the Harvard Humanitarian Initiative, where Dr. Michael VanRo
oyen, Dr. Jennifer Leaning, Vincenzo Bollettino, and colleagues work hard to improve medical care in crisis situations and have facilitated my access to Harvard’s library collections.
Sincere thanks for the kindnesses of Cheryl Young, David Macy, and the staff members and supporters of the MacDowell Colony and its De-Witt Wallace/Reader’s Digest Fellowship; Elaina Richardson, Candace H. Wait, and the staff members and supporters of Yaddo and its Dorothy and Granville Hicks in Literature Residency; and the Rockefeller Foundation, Rob Garris, Pilar Palacia, and the staff members of the Bellagio Center for the Arts.
Family members and friends were wonderful supporters of this work throughout its years-long evolution. The members of the Invisible Institute in New York have been dear companions in the world of ideas for nearly a decade.
I’ve saved the most important book-conjurers for last.
Tina Bennett is a miracle. Agent, advocate, sharp-eyed reader. She celebrates every least bit of success with motherly pride and shows up in times of trouble. She championed my work on this story from the moment I described it to her casually over lunch in early 2007. I appreciate her more than she knows and so, too, her peerless assistant Svetlana Katz.