by Sheri Fink
The American team set up a field hospital housed in tents on a college campus in the capital, Port-au-Prince. They had trouble recording unfamiliar names and instead assigned patients numbers. One woman who arrived at the field hospital the week after the earthquake was identified in medical records merely as Jane Doe 326. Her real name was Nathalie LeBrun. She was thirty-eight years old and dressed in a white nightgown with lacy trim. Through a translator, she told me about her medical problems, which had preceded the earthquake. “She can’t breathe right,” the translator said, “and her body’s swollen. She’s been like that for a while, but ever since the earthquake, it’s added on to it.”
The US medical team found a tank of oxygen and ran a tube to her nose to help her breathe. Overnight the tank ran out. The oxygen level in LeBrun’s blood plunged dangerously low. In the early morning, a nurse who believed she was watching LeBrun die sat crying with her patient. The nurse had been told there was no more oxygen. Doctors called for help, and the staff found another tank. Again, they hooked up Nathalie LeBrun to oxygen, and her breathing eased.
Still, the supply chain to the US disaster teams was failing, as it had after Katrina. The brother of another Haitian patient finagled a large oxygen tank from elsewhere in the city. Meanwhile, the American team had another idea about how to help LeBrun. They put her on a portable oxygen concentrator, which extracts oxygen from the air, but it kept overheating and shutting down. Moreover, the device runs on electricity, and the fuel needed to run the electric generators was in short supply.
At a morning meeting under a mango tree, a logistician passed that news to his medical colleagues. “We’re at a critical level with our diesel supply. We have one can per generator left. After that everything shuts down. So I’m freaking today. I mean, I am freaking.”
The team found more fuel, but twenty-four hours later, bottled oxygen—Nathalie LeBrun’s backup oxygen source—remained scarce. The field hospital’s liaison officer was a nurse. His job was to manage the flow of patients through the hospital, and he told me he faced a quandary: what to do about Nathalie LeBrun.
Her breathing difficulties were likely caused by a chronic heart problem, and her need for oxygen might continue indefinitely. He reasoned that the limited supply of oxygen would be better used if it were given to those who needed it only temporarily—for instance, people who’d been injured in the quake and needed oxygen during surgery. He made the decision to withdraw the oxygen from Nathalie LeBrun. “Which essentially is a death sentence for this woman,” he told me.
He checked his decision with the head doctor. The doctor agreed it was right. A plan was developed. LeBrun’s oxygen would be turned down slowly, and she would be driven to a partially destroyed Haitian hospital where she’d been treated before, but where, they believed, there was no oxygen at all.
LeBrun was not consulted or informed. She was only told that she would be transferred to the Haitian hospital. That afternoon, she gave me a huge smile and spoke hopefully about her future.
By late afternoon, nobody had started to wean LeBrun from her oxygen concentrator. Staff had stayed busy caring for patients with broken bones, complex wounds, and two women giving birth simultaneously.
Then, shortly after five p.m., a hospital staff member abruptly unplugged LeBrun’s oxygen concentrator when medics from the US Army’s 82nd Airborne Division arrived to transport her. Not knowing the plan, they tried to reassure her: “Just tell her she’ll be taken care of,” they said to the translator, “and she’s going to be going to another place.” Then they hoisted her into the back of a Humvee ambulance. Before the ambulance even started rolling, a military doctor noticed LeBrun was beginning to have trouble breathing. The ambulance had an oxygen tank available, but a nurse from the field hospital’s command staff assured the doctor that LeBrun’s problem was chronic. According to the triage decision, no oxygen was provided for her.
With the doors shut, the back of the ambulance was hot and dark. The ride was rough. I sat beside LeBrun, who leaned against one of the Humvee’s metal sides, coughing and struggling to breathe. Someone at the American field hospital had given her an asthma inhaler, which she assumed contained oxygen. She shot doses of the drug into her mouth again and again. “Oxygene!” she wheezed. “Oxygene!” LeBrun knew exactly what she needed.
Based on utilitarian calculations alone, it had been logical to remove LeBrun’s source of oxygen. But the health professionals involved in the decision were not willing to face her and tell her about it or be there to implement it. Issuing “a death sentence” is easier than executing it.
Perhaps informing LeBrun and dispatching her gently in a cloud of morphine would not, however, have been the better option. When we pulled up to the destroyed Haitian hospital, Dr. Paul Auerbach—an emergency physician and one of my former medical school professors—happened to be volunteering there. He found a tank with a bit of oxygen left and treated her aggressively that night with low-cost diuretics to remove some of the fluid from her lungs, stabilizing her to the point that she didn’t, at least for a time, need the oxygen.
WHETHER IN HAITI or the United States, disasters present the same challenge: how and whether to inform and involve viable, aware patients or the family members of patients when potentially lifesaving resources are being denied. Little guidance exists. In normal times, it is easier to avoid acknowledging that some patients don’t get access to needed care and refrain from engaging in an inclusive search for solutions. Disasters foist a recognition of rationing. Years after the earthquake, as Superstorm Sandy intensified outside Bellevue Hospital, Dr. Laura Evans, the critical care medical director, faced a version of the same conundrum. She brought news of the expected power outage back to her ICU staff. Choices had to be made about which patients would have access to the six power outlets that might keep working even if every other outlet died. Evans had studied the New York state guidelines on how to allocate ventilators in a severe respiratory pandemic using a scoring system that estimates how severely ill someone is. Desperate for a procedure to help guide the decision making, she voluntarily repurposed these untested plans that had been inspired by Katrina.
Evans pulled together an ad hoc committee to make the choices. “This isn’t a role for one person,” Evans told hospital leaders. Her committee was composed of professionals who had no patients under consideration. In this way, direct providers would be free to do what their ethical duty required. “If you’re the primary doctor,” Evans later explained to me, “it’s your job to advocate for your patient.” The committee, by contrast, could take a wider range of factors into account and choose fairly according to clearly defined scoring guidelines. The committee included not only doctors but also ethicists and nurses. It did not, however, include representatives of patients or their families.
The decisions about which patients would be connected to the six power outlets and the reasons were communicated to the other staff members. Some challenged the choices, but they accepted them. All of this was accomplished—a list of patients, moving them between beds and outlets—within about two hours.
As she prepared the plan, Evans also thought about how she would feel the next day if it had to be implemented. She wanted, she said, to “have a process that we can describe, that is transparent,” that was applied to all patients the same way, “as fair and equitable as it can be.” She knew the story of Dr. Pou and Hurricane Katrina. She wanted to look back and be able to justify the decisions she and her colleagues were making, to maintain the trust of the larger society that might examine them. She even imagined what word the infamous tabloid headline writers at the New York Post would find to rhyme with her last name if patients died (“heavens,” of course, goes with “Evans”).
That night, as Evans and her colleagues were completing their list, the lights flickered out. City utility power had failed. It took about seven terrifying seconds for power from the backup generators to kick in and get things functioning again. Soon after, Evans receiv
ed a call from the hospital’s command center. They predicted that, except for those six outlets, all power would be lost in the next sixty to ninety minutes. Millions of gallons of floodwater were filling the basement of the twenty-five-story hospital. Water gushed into elevator pits with enough force to remove elevator doors from their moorings.
Evans and her colleagues stationed two health professionals at the bedsides of all patients who relied on ventilators, preparing to squeeze oxygen into their lungs manually with flexible Ambu-bags. Bright-orange extension cords connected to the backup generator system snaked through patient corridors. Nurses counted drops on IV pumps so that if everything failed they could go “old school” and give vasopressors by drops per minute.
Communicating the triage decisions to patients and their family members was the most challenging aspect of that night, Evans said. She and her colleagues could not imagine how to inform those who would not get power outlets and they feared doing so, so they put off the task. Looking back, Evans feels the families had a right to know. Also, the staff did not think about asking whether any of the selected patients or their families might wish to volunteer to give up a power outlet so that it could be provided to someone else. “It wasn’t even on my radar,” Evans says.
At Connecticut Hospice in Branford, which evacuated in haste as Sandy approached, the staff did consult with patients and their families. They discovered something surprising. Hospice leaders had planned to move the sickest patients first. But those patients and their families chose to allow the healthier patients to go first.
Involving patients and their families in these decisions is all too rare. Triage is typically seen as the preserve of medical professionals. The ventilator rationing protocols that have been developed around the country have not been publicized, perhaps out of fears of how the public will react; even many medical professionals aren’t aware that their states or hospitals have them in place.
Reluctance to draw public attention to the plans is understandable. They outline the creation of what could, in all fairness, be called death panels: groups of doctors who would decide which patients are given a higher chance to survive. Similar fears surround health-care reform in the United States—when insurance coverage is expanded to more people, what services, to which people, will be cut? Whether the disaster protocols reflect the values of the larger public simply isn’t known. In an age of extreme sensitivity over health-care rationing, almost no one has dared to find out.
When New York officials first released the ventilator plan that Laura Evans later repurposed for Sandy, they referred to public review as “an important component in fulfilling the ethical obligation to promote transparency and just guidelines.” They envisaged the use of focus groups to solicit comment from “a range of community members, including parents, older adults, people with disabilities, and communities of color.” Those focus groups were never held. The plans had not been changed.
Dr. Guthrie Birkhead, deputy commissioner of the Office of Public Health for New York State, told me in 2009 that he wondered whether it was possible to get the public to accept the plans. “In the absence of an extreme emergency, I don’t know. How do you even engage them to explain it to them?”
AN ANSWER to Birkhead’s question can be found in Maryland. “All hell is breaking loose,” Dr. Elizabeth Lee Daugherty told a roomful of volunteers who convened to discuss triage on a Monday afternoon in June 2013. “That’s the scenario we’re talking about. All hands are on deck, we’re doing everything we can, and we are totally overrun with patients.”
The scenario she described, offering the example of a pandemic, was analogous to the one the doctors at Memorial faced when the waters rose and they had to choose which patients to prioritize first for evacuation. The sickest, because their lives relied on machines? What about those who might have the greatest chance of surviving their immediate illnesses, because saving them would be a more efficient means of doing good? Or, for the same reason, those with a better chance of long-term survival, based on underlying health problems? Should age play a role, drawing on the principle that everyone deserves equal rights to live through the all stages of life? Or could some estimate of social worth or instrumental value in the situation at hand be factored into the mix, favoring health professionals who would be needed to assist people through the crisis? What about support staff? Where to draw the line?
Or would the fairest principle be one that is typically used in non-emergencies: first-come-first-served according to need or perhaps even a lottery that would offer an equal chance to everyone who was sick at a particular point in time? Similar questions could be asked in facing other difficult problems, including national drug shortages.
Daugherty laid out the options for the participants and turned the discussion over to them. “What are your values?” she asked. Unlike in New York, where the triage proposal was developed by experts, Maryland health professionals were seeking the input of a wide-ranging sample of the general population, in small group sessions held over a period of two years across the state. “Maryland is as far as we know the first state to tackle this problem this way,” Daugherty told the volunteers. “By that I mean having these kinds of conversations before we have developed a framework for making decisions.”
Daugherty, a thirty-nine-year-old critical care doctor, began thinking about the problem of scarce medical resources in college during a medical missionary trip to Bogotá with her father, a physician. Her interest deepened during her own international work as a doctor in impoverished regions. As the medical control chief for the Office of Emergency Management at Johns Hopkins Hospital, a 1,059 bed tertiary referral hospital and the cornerstone of the $6.5 billion Johns Hopkins Medicine enterprise, she was asked to help design a pandemic plan. In discovering how inadequate even this well-endowed hospital system’s supplies were in relation to expected demand, she recognized an acute analog to the chronic resource dilemmas she had seen in other countries.
Daugherty struggled over the question of which pandemic flu patients should be turned away from the intensive care units, sealing their fates. Could a doctor really remove one patient from a ventilator to make way for another who might have a better chance of recovering? Health professionals, who tend to favor utilitarian efficiency in the distribution of limited goods, such as organs, shouldn’t be making life-and-death value judgments alone, Daugherty thought, particularly in the backyard of Johns Hopkins Hospital, a low-income neighborhood where public trust in medicine is poor even at the best of times, a legacy of ethically questionable research studies and historical discrimination.
Daugherty and her colleagues wanted to ask nuanced ethical questions of the hospital’s neighbors, but wondered how to pose them to people who might never have considered them or might react angrily to the mere notion of planning to limit care. To design an attempt at public engagement, they turned to the Program for Deliberative Democracy at Carnegie Mellon University. The program’s work is modeled on concepts that originated in the theoretical work of philosophers Jürgen Habermas and John Rawls and were developed by Jim Fishkin, a Stanford professor who invented “deliberative polling,” a method designed to capture how opinions change when citizens are given the chance to learn about and carefully consider policy choices.
From its earliest days, the Maryland experiment proved something vital. Whether at Zion Baptist Church, in a neighborhood of boarded-up row houses in inner-city Baltimore, or at a “wellness center” in the wealthiest reaches of Howard County, regular citizens showed they were able to gather, engage, discuss these issues, and learn from one another. They easily grasped ethical concepts that some health officials had assumed were the province of only experts.
In the basement of Zion Baptist Church on one Saturday afternoon, a facilitator asked a tableful of volunteers what they thought about using age as the primary basis for allocating resources in a disaster. “We are going to discuss why this would be a good idea or not,” she said.
A young man offered his opinion. “If this were to happen tomorrow, and if I would get a ventilator and a twelve-year-old wouldn’t, or a four-year-old wouldn’t, I just think that would be the saddest thing possible.”
A woman who was a mother disagreed. “It’s really hard for me to say that just because they’re younger than me to give it to them, because I would feel personally like I have responsibilities and I would want to be here.”
Her neighbor extended the thought. “There’s so many social ramifications of what’s going to happen once all these young lives are saved,” she said. “If a significant generation, if the senior citizens were cut in half, that would alter our society. That means that, you know, just like you definitely don’t want your child to die, people don’t want to be grand-motherless, people don’t want to be grandfatherless. You know what I mean? So, I’m just a little concerned about the aftermath of just giving it to the youngest person.” She worried about what would happen to the children who were saved. “Who’s going to raise them, who’s going to teach them, who’s going to really take care of them?”
Listening to the debate over the value of elderly lives brought to mind the recent funeral of my great-uncle. In his nineties with advanced Parkinson’s disease, he’d filled out an advance directive stating he would not want to be put on life support. However his doctor was out of town when he developed pneumonia and was admitted to a hospital. Another doctor resuscitated him and put him on a ventilator against his pre-stated wishes. Within days, he was sitting up in bed reading the newspaper as the ventilator puffed away. In less than a week he was off the ventilator, saying he was relieved to be alive, highlighting the complexity of end-of-life decision making, of predicting in advance what we would want in a situation we have never faced. He requested his DNR be removed. He lived a few more months, and his granddaughter, a twenty-one-year-old college student, described in a eulogy what that time meant to both of them as she spent her summer vacation visiting him in the hospital, a rehab unit, and a skilled nursing facility: “We talked about politics, economics, current events, gossip, books, movies, the past, the future. He taught me about social responsibility and his past. I taught him about opera and music. We even talked about boys and relationships. When he gave advice, it was always good and, more important, wise. […] I will continue to live my life as if I’m going to tell him about it.”