by Sheri Fink--Pro Pubica
This flu season, health officials across the country have been grappling with one of the most difficult questions imaginable: Which patients should be given access to lifesaving treatments if the number in need during a severe pandemic far exceeds the ability of the medical system to cope?
Part of the impetus for this worst-case planning came out of the confusion that reigned in New Orleans hospitals after Hurricane Katrina in 2005. Medical evacuation helicopters were in short supply and doctors struggled with how to prioritize — or triage — patients. Some died, and lawsuits followed.
While Louisiana later passed three laws aimed at protecting health workers from prosecution for their actions “in accordance with disaster medicine protocol,” the state, like many others, has not yet defined what that protocol should be, particularly in the case of a severe flu pandemic.
“It’s an exceedingly ugly topic altogether,” said Dr. Stephen Brierre, an intensive care unit physician with Louisiana State University Health Sciences Center. He began chairing an effort to develop such a protocol last spring in Baton Rouge after the emergence of H1N1 “swine” flu.
Normally, Brierre works to save the lives of each of his critically ill patients. However, he believes a different standard, a “crisis standard,” would apply in a dire situation where critical shortages of doctors, nurses, medicines, supplies and life support machines like ventilators emerge. That has not occurred in the U.S. during the first two waves of the H1N1 flu pandemic, and remains unlikely, but it could be the case during another, future pandemic, a bioterrorist attack or natural disaster. According to Brierre, the plan he is helping to draft would be a significant modification of a controversial plan drafted by Utah officials (PDF). Utah's pandemic triage guidelines set out categories of patients — including those with end stage heart failure, incurable cancer and the elderly — who would be denied hospital and intensive care unit admittance during a severe pandemic. The Utah plan also anticipates removing certain patients from life support regardless of their or their families' permission, to make way for others who are expected to have a better chance of survival. “It’s almost the antithesis of what I do for a living,” Brierre said.
He is concerned that Louisiana’s draft plan, which was developed by about two dozen hospital leaders, health professionals and ethicists and is being refined with input from public health officials around the state, will be misunderstood when wider numbers of Louisianans become aware of it. At recent presentations to public health leaders, Brierre flashed a ProPublica article on the screen that revealed details of a similar draft influenza triage plan from Florida. As in many states, Florida officials had not made their planning process open to the public. The plan’s publication took residents by surprise and stirred controversy, including heated discussions on the Internet and talk radio, and blog posts with incendiary headlines: “Throw Granny off the Respirator!”
Brierre challenged his colleagues to think about ways they might inform the public about their plan, encourage constructive comment and, ultimately, achieve something approaching consensus on an equitable plan. “Everybody was kind of befuddled on that,” he said. “We are struggling with it.”
Brierre says there are no “right decisions” about how to allocate care in extreme disasters, but planning in advance of a crisis will help doctors make better decisions. “If they have to do it in real time, there will be no justice.” But questions of government involvement in end-of-life planning and medical rationing have provoked shouting matches during Congress’s development of health reform legislation. The pandemic triage plans typically call for a committee to decide, using guidelines and medical expertise, which patients get life-saving care and which do not. “Gee that sounds like a ‘death squad’ to me, maybe,” said Knox Andress, an emergency preparedness director at Louisiana State University in Shreveport. “There’s a big potential public perception issue.”
Some have questioned whether it is even possible to engage Americans on the subject. “The level of public discussion is so poor in the U.S.,” said Norman Daniels, an ethics professor at the Harvard School of Public Health. “The partisan attacks of the health reform debate have set back the public discussion of resource allocation in a very serious way by putting things in terms of ‘death panels’ or ‘it’s un-American to limit resources,’ as if American insurers don’t do that all the time.”
Daniels serves on an advisory committee to the Centers for Disease Control and Prevention that recently approved ethical guidance for states developing plans that would alter standards of care during pandemics. The committee wrote that when it comes to questions like withdrawing life support from some patients in an effort to maximize benefit to the population, government and hospital policy should be transparent and “formed with input from the public.”
At its core, such policy is based on judgments about what the goals of triage should be — whether maximizing lives saved, years of lives saved, quality of life, fairness, social trust or other factors. The larger community may emerge with different values from those held by small groups of medical professionals. In the city of Seattle and the rest of King County in Washington State, “Many people felt withdrawal of care was unacceptable if the individual’s life was at stake,” according to a report of a rare public engagement exercise (PDF) on pandemic influenza standards of care. The report cited participants’ “aversion to creating a system where medical professionals were withdrawing life-saving services which would erode trust in the system.”
The Seattle exercise was funded by the U.S. Centers for Disease Control and Prevention, which recently gave grants to six state and local health departments to engage the public on controversial issues in responding to pandemic influenza. Two, including Seattle, used their grants to tackle rationing and resource allocation with groups recruited from the public, according to Roger Bernier, a senior advisor at the CDC.
Bernier said it is both possible and necessary to engage the wider community of non-experts in these discussions. “They are the holders of our public values and are in the best position and in the most non partisan position to weigh competing values and make tradeoffs to determine in a particular circumstance which of the values are going to be paramount.”
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.”
Organizers in Seattle said their effort was worthwhile. “We got some very meaningful feedback,” said Meredith Li-Vollmer, a risk communication specialist with the public health department in Seattle and King County.
The county convened one forum for experts and individuals with a “vested interest” in altered standards of care, such as advocates for the elderly and disabled. Three other groups, including one conducted in Spanish, were recruited from members of the public. Some important differences emerged. “What they wanted in terms of decision making in disasters was very similar in many ways,” Li-Vollmer said. “The way they thought about equity issues was a little different.”
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.”
Participants supported treating as many people as possible even if that meant compromising the normal standard of medical care, and they wanted a fair and widely accessible prioritization system. They said that saving the greatest number of people should drive medical decisions, with some priority given to health care providers and others contributing to the disaster response, and, to a lesser degree when all other factors are equal, children and pregnant women. Ability to pay was ranked among the least important considerations. “They really did deliberate in a very thoughtful way,” said Li-Vollmer. “They listened to each other.”
Another CDC-funded public engagement project initiated by the Minnesota Department of Health included both a statewide media campaign and daylong gatherings of large and small groups conducted at nine sites, including a depressed mining and lumber area, a farming community, a wealthy suburban neighborhood, a center serving people with disabilities, a Native American reservation and an area adjacent to the Red River that had been devastated by flooding. “Our small groups were winding down at the same time we were having these extraordinarily rancorous conversations about national health care reform breaking down in anger and vitriol,” said J. Eline Garrett, an assistant director at the Minnesota Center for Health Care Ethics in St. Paul, which facilitated the groups with the Center for Bioethics at the University of Minnesota in Minneapolis. “I was truly, truly impressed with the manner with which people were willing to hear different opinions, disagree, convince each other. It was democracy in action and it worked, it really did.”
Garrett said participants agreed that the goals for medical rationing in disasters should include protecting public health and critical infrastructure and striving for fairness. The groups supported randomly distributing resources in cases where doctors could not predict which people were more at risk. Most participants said age could be used as a factor in deciding which patients get treatment when all other factors are equal, with lower priority for older individuals. However some participants strongly opposed age-based rationing.
The extent to which the public’s views will be used by health departments to inform policy is still unclear. According to Garrett, findings from the public engagement project have “cross-pollinated” an expert group developing clinical guidelines for triage in disasters in Minnesota. She said knowing that the public placed a high value on fairness and non-discrimination in resource allocation during a pandemic helped state officials shape the H1N1 response. That included the establishment of a toll-free number aimed at ensuring that all Minnesotans, including those without health insurance, could access potentially life-saving antiviral medicines.
In Louisiana, public health officials are developing a plan to reveal their draft crisis standards of care to the public, including outreach to the media and a version written in layman’s terms for community members who want more information. While they worry about the reaction, they also see potential benefits. “As physicians, when we’re afraid to share, I think we’re leaving the burden on ourselves,” said Dr. Jimmy Guidry, Louisiana’s state health officer. Broadening the discussion of goals and values is a way of dividing responsibility for some of the toughest decisions in medicine.
"We need to look more at these structural factors that are built into our society because of racism," Dr. Somnath Saha, an associate professor of medicine at who studies racial disparities in health care but wasn't involved in the current investigation, told ProPublica. "This study shows we can't ignore those factors anymore."
Dr. Sheri Fink has reported on health, medicine and science in the U.S. and from every continent except Antarctica. Since 2004 she has been a frequent contributor to the public radio newsmagazine PRI’s “The World,” covering the global HIV/AIDS pandemic and international aid in development, conflict and disaster settings. Her articles have appeared in such publications as the New York Times, Discover and Scientific American. Fink's book War Hospital: A True Story of Surgery and Survival (Public Affairs, 2003) won the American Medical Writer's Association special book award and was a finalist for the Overseas Press Club and PEN Martha Albrand awards. Fink has taught at Harvard, Tulane and the New School. Most recently she was the recipient of a Kaiser Media Fellowship in Health from the Kaiser Family Foundation.