Despite our best preparedness efforts, a real-life flu pandemic would require some difficult and uncomfortable decisions. And perhaps the most uncomfortable will be deciding who among us gets priority access to our limited health care resources. How do we decide whose life is worth saving?
There are so many different ways to view such a scenario; so many different values and ethical dilemmas to consider. In the chaos of a pandemic, life-saving allocation decisions would not only impact the patient in question — the repercussions would likely ripple throughout families and entire communities. And yet, few disease preparedness efforts have systematically engaged in gathering public input about what kind of values we should use to guide these decisions. In response, a group of researchers set out to test their hypothesis that residents could, indeed, provide policymakers with meaningful input on these somewhat unpleasant questions. Their findings were recently published in the Annals of the American Thoracic Society.
“One of the big challenges in this arena is that there are a number of ethically appropriate ways to make these really tough decisions, but they’re not always consistent with the values of any given community,” Lee Daugherty Biddison, an assistant professor in the Division of Pulmonary and Critical Care at Johns Hopkins School of Medicine, told me. “People spend years of their lives studying bioethics…but can the average community member also provide us with meaningful feedback on these complex ethical issues? We thought that they could and we found that they did.”
Biddison was part of the team of researchers who examined whether the “democratic deliberative methodology” was effective in engaging residents on ethically challenging health care questions and whether those methods could elicit input that state officials could ultimately use to shape policy. Using the methodology, which requires citizen participation in open and informed conversations, researchers held five-hour community meetings in two Maryland communities with a total of nearly 70 residents. At the community meetings — one in affluent Howard County, Md., and the other in inner Baltimore City, where more than a quarter of families live below the poverty line — attendees were presented with a scenario in which a severe flu pandemic had overwhelmed Maryland’s critical care capacity. They were asked two main questions: What should we do in situations where there are more patients needing ventilators than there are ventilators to use? And should health care providers ever be allowed to remove a ventilator from one patient who needs it to survive and give it to another patient who also needs it to survive?
Interestingly, study co-author Alan Regenberg, director of Outreach and Research Support at Johns Hopkins Berman Institute of Bioethics, told me that the first reaction among many meeting participants was try to find a way out of having to ration medical care in the first place, such as asking if people can share ventilators or if more ventilators can be built. That’s what made ventilators such a good subject for conversation, Regenberg said — they’re expensive to manufacture, they don’t store very well in the long term and it’s plausible that we’ll run out in a pandemic.
“As the day proceeded and people understood the decisions that had to be made they were happy to contribute,” Regenberg said. “Many may have thought coming in that the experts could handle this…but they really came to realize that this is a tough issue and they’ve got just as valid an opinion on it as anybody else. It sort of empowered them.”
Biddison she was surprised at how quickly people grabbed hold of the concept and how willing they were to wrestle with these issues — “these are not comfortable questions,” she added. For example, some thought children and young people should be a priority, while others thought that elders and the wisdom they offer were an equally important part of the community.
“It’s really so important to get down and dirty in those conversations,” Biddison said. “At least then policymakers can respond to those values and communicate decision-making respectfully in the context of people’s values.”
In discussing the differences between the two communities, Biddison noted that individual experience drove the conversation. She and her study co-authors Regenberg, Howard Gwon, Monica Schoch-Spana, Robert Cavalier, Douglas White, Timothy Dawson, Peter Terry, Alex John London, Ruth Faden and Eric Toner wrote:
Comparing the two meetings, certain distinct concerns emerged that may be explained, in part, by the contrasting circumstances that the communities represent. People engage with medical ethics on the basis of their life experiences, social roles, political concerns and cultural beliefs. People’s moral perspective on medical practice emerges from what they have experienced and learned about the world, including relations of inequality, and not simply from abstract high-order values.
In particular, people at the Baltimore meeting — residents from a community with a high crime rate — talked a lot about whether certain people, such as convicted felons, shouldn’t have access to ventilators. They also “adamantly” felt that access shouldn’t be determined by a person’s ability to pay. Baltimore participants were also concerned about the transparency of the decision-making process and whether their input would be considered. The study noted that “such concerns would be well-founded among groups with historic reasons to question whether public policies represented the interest of disadvantaged people who are often politically marginalized.”
Among Howard County participants, logistical concerns were more common, the study found. Noting that Howard County residents had more exposure to disaster planning, researchers reported that they struggled with how much time decisions would take — in other words, “would someone die without a ventilator while decision-makers were still making up their minds?” Howard County participants were also concerned about fairness, recommending that officials use “science” or “statistical analysis” to make allocation decisions. Both community groups felt no single principle, such as prioritizing those most likely to survive, would be adequate to address the pandemic scenario.
Overall, the study found that the “deliberative democratic method provided a format for facilitating civil conversation that might otherwise be fraught with both misinformation and contentious debate.”
“I think there’s a lot of anxiety about what goes on in the ivory tower…and given the fact that we’re talking about a true disaster scenario in which everything has changed, it’s really critical to have established transparency and through that, public trust,” Biddison told me.
The study is part of a larger project to engage the public on the values that should guide officials in making health care allocation decisions in a disaster. Having found that the deliberative democratic method was an effective engagement tactic, Biddison said the next step is to synthesize public feedback into a report that, hopefully, will help shape state policy.
“Trust is going to be absolutely essential if, God forbid, we have to enact this kind of plan, and transparency will play a big role,” Regenberg said. “It’s essential that people trust in the fairness of the process.”
To read more about the study and the public engagement project, click here.
Kim Krisberg is a freelance public health writer living in Austin, Texas, and has been writing about public health for more than a decade.