In the event of a flu pandemic, who should have priority access to life-saving ventilators, and who should make that determination? Few disaster preparedness plans have taken community values regarding allocation into account, but a new study is aiming to change that through public engagement with Maryland residents.
"In the event of a healthcare crisis, understanding the community perspective and having citizen buy-in will be critical to avoid compounding the initial disaster with further social upheaval," says principal investigator Elizabeth L. Daugherty Biddison, MD, MPH, Vice Chair for Clinical Operations in the Department of Medicine, Johns Hopkins School of Medicine.
"When life-saving medical resources become scarce, there are no ideal options, even among ethically-permissible ones. Understanding community perspectives and values will help policy-makers craft guidelines for those difficult choices," Biddison says.
To gain this perspective, Biddison and colleagues from the Johns Hopkins Berman Institute of Bioethics, Carnegie Mellon University and University of Pittsburgh Medical Center are exploring the use of "deliberative democratic methods" typically employed to understand how the public views potential policy changes. A pilot study consisted of two community meetings; one in affluent Howard County, which ranks top among the state's county health rankings, and the other in a neighborhood near Johns Hopkins Hospital in inner Baltimore City, which ranks last. The results were published online ahead of print in April in the Annals of the American Thoracic Society.
"We found that participants' ethical perspectives were framed in large part by their place-based life experiences," says Ruth R. Faden, PhD, MPH, Director of the Johns Hopkins Berman Institute of Bioethics, a member of the study team. "Our results thus far underscore the importance of broad and diverse community input, to capture more fully the issues that matter to people of various backgrounds."
The community meetings followed the same procedures used to gather information on views related to controversial policy issues including marriage equality, regional tax sharing, and economic redevelopment. According to the study results, the Baltimore City group spent significant time discussing whether particular groups should be disqualified from access to ventilators, such as convicted felons and undocumented immigrants. The study authors connect these concerns directly to crime-rate and demographic trends in the area.
Members of the Howard County community group were recruited by a private-public partnership focused on strengthening local resilience to disasters, and focused on logistical concerns. According to the study, "County residents struggled with the implementation timeframe required by different approaches: would someone die without a ventilator while decision-makers were still making up their minds? County residents also expressed greater concern about the potential for bias in decision making."
Regarding the differences in focus between the two groups, the study states, "[T]he differences reflected distinct ways of thinking about the issues. This finding underscores the importance of achieving a diverse, regionally varied sample of Marylanders" for the project's planned expansion across the state. With such diverse feedback from citizens, "health authorities and elected officials will be better prepared both to shape and to communicate the content of Maryland's future framework in meaningful ways," the study concludes.
Biddison says that the state-wide expansion of the study will include at least 10 forums, five for general community members and five for healthcare professionals. The results will be shared with Maryland health officials for practical application to the state's policy on healthcare resource allocation in the event of a disaster.
- Elizabeth L Daugherty Biddison, Howard Gwon, Monica Schoch-Spana, Robert Cavalier, Douglas B White, Timothy Dawson, Peter B Terry, Alex John London, Alan Regenberg, Ruth Faden, Eric S Toner. The Community Speaks: Understanding Ethical Values in Allocation of Scarce Lifesaving Resources during Disasters. Annals of the American Thoracic Society, 2014; 140424123528004 DOI: 10.1513/AnnalsATS.201310-379OC
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