How do you decide who gets access to life saving medical resources like a ventilator when there are not enough to go around in a catastrophic disaster? My colleagues and I, along with collaborators at the Johns Hopkins Office of Emergency Management, School of Medicine and Berman Institute of Bioethics and Resolve, have been wrestling with this question for the last several years. Other researchers and experts have convened working groups and task forces to draft expert guidelines. We think their efforts have been very valuable, but we decided to approach the problem from a different angle. We decided to ask the public first.
For the last 5 years, we have been developing and running a community engagement research project asking lay people and healthcare workers in Maryland what ethical principles they think should best be used in allocating scarce resources. Specifically, we have conducted 15 day-long community engagement forums across the state over the last 2 years, asking Marylanders about what values they think should be applied when deciding who should get priority for a ventilator in a severe pandemic when there may be many times more patients with respiratory failure then there are ventilators to go around. I presented some findings from this work at the 3rd annual National Healthcare Coalition Preparedness Conference in Denver recently, and we will be presenting even more findings at the 2015 Preparedness Summit in Atlanta in April. The findings of this work will inform recommendations to be made to the State of Maryland for inclusion in a potential future Crisis Standards of Care plan.
For this project we used a “deliberative democracy” approach designed by the Carnegie Mellon University Program for Deliberative Democracy. In this approach, community members engage in small group discussions with trained facilitators. The goal is not to create consensus but rather to capture the many different ways that people think about such difficult decisions. The magic in this process is to see how people’s strongly held opinions evolve over the course of a thoughtful discussion.
We found that, universally, the participants were able to understand the ethical principles involved and work in constructive and civil discourse with others who hold different views. They were able to think creatively about the issues and apply their own personal values in thoughtful and nuanced ways. This was true whether the forum was held in a blighted inner city neighborhood, a wealthy suburb or a rural community. We did, however, also find that the community in which someone lives does play a role in how one think as about such things, especially when it comes to aspects such as social justice and access to care.
I used to think that a measure of success was getting on the cover of Rolling Stone (in the ‘70s) or Time (in the ‘90s) but now it appears that the measure of success is being on the cover of a Chipotle bag! Chipotle asked prominent authors to write short essays that they have printed on their bags, and Sheri Fink is one of the authors. Sheri, who won a Pulitzer Prize for her reporting on Hurricane Katrina, has been following our project from its inception and decided to make her essay on the bag about this project. She also wrote about the project in the epilogue of her bestselling book Five Days in Memorial.
What’s really important about this work, I think, is not which ethical principle (or combination of principles) is found to be most popular but that it shows that community members can constructively participate in such deliberations. It is important that a plan to allocate scarce resources reflects the values of the community as much as possible. But, as we have found, there is not one set of values, but many. To be able to reflect these values, we first need to understand them. We also found that you cannot get at these values through a simple poll or survey. As our project has shown, people’s opinions change as they engage in deep discussion—this is when their true values come out.