Some ethics committees are adding community members to their ranks. “This has been a suggestion by leaders in the field since ethics committees first formed,” says Trevor M. Bibler, PhD, director of clinical ethics consultation services at Houston Methodist Hospital. However, the COVID-19 pandemic required that ethics committees create guidelines for the distribution of scarce resources. At that point, many committees put efforts to recruit community members on hold. “Medicine’s recent dedication to including excluded or distant voices in important research, policy, and clinical decisions has probably contributed to the renewal of this conversation,” adds Bibler.
Since Bibler became director, the ethics committee has worked to include community members. Previously, the ethics committee listed some community members on paper, but all were retired doctors or chaplains who had previously worked for the hospital. “We didn’t feel like just relying on retired Methodist professionals was getting accurate community representation,” he says.
Recruitment of community members happens in a variety of ways. “We are very open to, kind of, what the universe gives us, and we are attentive to who is showing interest,” says Bibler.
Since the ethics committee is under the auspices of spiritual care and values integration, ethicists sought input from the vice president of spiritual care. “He thought somebody with a particular religious background would be helpful,” says Bibler. As a result of this input, the ethics committee recruited a rabbi who was well-known to the community and had previously participated in local events and fundraisers. Bibler spoke with the rabbi about bioethics issues, the role of the ethics committee in general, and what the rabbi’s role would be. Bibler explained that the ethics committee was not asking him to represent his religious tradition or his synagogue or all Houston citizens, but instead, to use his understanding of what is important and meaningful in his life and the lives of those he knows to assist the committee to reason through ethics issues. “It seems unfair and mistaken to ask a person to ‘represent’ an entire community and be the sole representative of their community’s thoughts,” explains Bibler.
The ethics committee also asked the chief medical officer (CMO) of a local homeless healthcare group to be a committee representative. The CMO had contacted the ethics service to ask about a fellowship, but it wasn’t possible due to the CMO’s work schedule. Knowing that the CMO had an interest in ethics, the ethics committee invited her on as a community member, which has much less of a time commitment.
The committee meets only six times a year for one hour, in addition to holding periodic, ad hoc meetings to discuss clinical cases. Occasionally, task forces weigh in on pressing ethics issues. A recent example was thoracoabdominal normothermic regional perfusion, which the task force drafted a memo sent to organizational leaders and the transplant program. “In 2024, we will be incorporating more policy work and teaching,” says Bibler. The new community members are expected to attend all meetings and participate in deliberations and discussions.
Bibler also explains to prospective community members that the committee is expert-driven. This means that while their perspectives have both intrinsic and extrinsic value, they have to be prepared for the fact that they are not the final word on an issue. “Part of the reason we are gathering leaders of local communities is because they are used to hearing people out and reading the room,” says Bibler. “No one person on the committee is the sole arbiter of what is good, right, and true.”
The ethics committee plans to revise its determination of death policy, including a supplement about responding to families who refuse declarations of death according to the neurological criteria. “It will be essential that we hear from our community members on this. There is no one right way to respond to these kinds of requests, so getting some input from our members who are not embedded in the controversies will likely be helpful,” says Bibler.
Ideally, ethics committee members are people who feel comfortable with rigorous ethical discourse to ensure good deliberation. “The committees often deal with sensitive issues as well, so there is a commitment to confidentiality,” says Ian Wolfe, PhD, MA, RN, HEC-C, senior clinical ethicist at Children’s Minnesota.
Ethics committees deal with sensitive and serious issues that can cause some distress. For example, issues around end of life, trauma, and even the tragic circumstances of cases can be very difficult even to hear. “It is not an easy appointment,” says Wolfe. Additionally, the ethics committee provides guidance through policies and statements around issues of life-sustaining treatments and allocation of scarce resources. “Community members are important to ensure we are capturing a robust moral voice when discussing those policies that will impact patients,” says Wolfe.
Pediatric ethics committees often discuss interventions for developmentally delayed adolescents, or adolescents who are not neurotypical and have minimal capacity to make decisions for themselves. “If the committee is only made up of hospital staff, then you generally only get an institutional view,” says Wolfe.
This view may lean heavily on clinician obligations, which could lead to restricting a certain intervention. “Insight from the family perspective, or community perspective, can change the ethical considerations of how burdens and benefits are calculated,” says Wolfe.
