Understand the patients your committee serves
Community members must be more than tokens
When it comes to making everyday decisions at a patient’s bedside, physicians, nurses, and ethics committee members and consult teams often think they know what’s best. As the cliche goes, however, you can never really understand other people’s values and wishes until you walk in their shoes. And when medical decisions conflict with patients’ wishes, well-intentioned health care professionals can find themselves tangled in ethical quandaries.
"What is an ethical dilemma but a conflict of values?" says Sue Rubin, PhD(c), a partner in the Bioethics Consultation Group in Berkeley, CA. Rubin and her partner, Lori Zoloth-Dorfman, PhD, encourage ethics committees and consult teams to have strong community representation. "When you have a person on the committee who can say, I’ve been there; I’ve faced this situation,’ it makes a world of difference," Rubin says. "Good community representatives keep the committee honest in its discussions. There are no power plays and no hiding behind medical jargon."
In a ruling last fall, federal regulators including the National Bioethics Advisory Commission and the U.S. Food and Drug Administration began moving toward informed consent standards based more on community representation.
Eleven years ago at Kaiser Permanente Medical Care Plan, having community members on its committee was simply a matter of realizing that "people who buy our health care services have a right to be more involved in how those services are offered," says George Peters, MD, MH, a surgeon for the plan’s Rocky Mountain division in Denver. "It was a stab in the dark that has worked out quite to our advantage," he says.
"Sometimes I am really torn between the value that this representative can add to the discussion of a case and the extreme effort it takes to help a layperson understand a complex medical situation," says Linda Lefrak, RN, MS, a neonatal clinical nurse specialist at Children’s Hospital in Oakland, CA. Yet she admits that the burden of simplifying the particulars of a case is on the nurse or physician. "When it comes down to this level, it is also a level that the family members can understand," she says.
"Often the clinical team has never faced the situation that confronts the patient or family member," Zoloth-Dorfman says. She encourages ethics committees to look at how their membership cuts across cultural, racial, and economic lines. "Illness cuts across all of these lines, but the professional giving care to the patient is not typically of the same class or background as that patient," she explains.
Racial diversity is one of the core goals your committee should have, Rubin says. "We cannot act as if having essentially an all white American group of people making recommendations for care for blacks, Hispanics, Asians, and immigrant populations does not make a difference," Zoloth-Dorfman says.
Choosing the right people
These ethics professionals agree that having solid and meaningful community representation on your committee is not an easy task. Where do you start? Don’t follow a quota system, they all agree. Decide what unique role a particular community member will play on your committee. Will it be a parent of a child who has a severe physical or mental disability? Will it be a clergy member or nun who is devoted to the care of the poor in the community and can make a decision based on this insight?
"We have always handpicked people who we think are committed to the ethics process and to the committee," Peters says. The Kaiser committee members must all agree to a core curriculum of education based on an ethics textbook and selected readings. They also must agree to "struggle with the issues" and to "do the work" involved in membership, he says.
But the health system is moving away from the handpicked model as it recognizes that new health care delivery systems are bringing more global issues to the table. "It should not be our goal to have a group of people who all agree. We want to hear the diversity of opinion, and sometimes that requires listening to opinions that you don’t want to hear," he maintains.
Lefrak’s pediatric ethics committee took suggestions for community members from staff and conducted brief interviews with prospective members. One community member is the mother of a handicapped child. The pediatric committee looks for certain core characteristics in its members: They must be thoughtful, well-grounded, trustworthy, good thinkers, and mentally healthy.
"When we are discussing children, especially, it is important to recognize the impact that the discussion can have on any member. For the mother of a child, however, it may bring up painful memories," Lefrak says. Be alert to this kind of distress among members, including staff, and support each other. A depressed committee member can negatively influence a case, she says.
Don’t dismiss one obvious source of community members your own staff. "The hospital staff is a diverse group of individuals," Lefrak points out. Often support staff live in the surrounding community and can be good representatives or recommend friends or community leaders who would make good members, say Rubin and Zoloth-Dorfman.
These ethics consultants make three broad recommendations for making community appointments to your ethic committees or consult team:
1. Look at the community your facility serves. Think about the possible values inherent in that community. Attempt to find people who will represent those values and reflect the community as a whole.
2. Search for thoughtful people from all walks of life. One hospital asks potential members to write a two-page letter about why they want to be an ethics committee member. Another committee chair has lunch with prospective members to assess their interest and commitment.
3. Invite more than one person to represent the community. The Kaiser committee has one-third of its members from the community. The Children’s Hospital currently has three.
Finally, start the process by debunking a common misconception. "Confidentiality is no more an issue with a community member than with staff," says Zoloth-Dorfman. Peters and Lefrak agree. In more than 10 years of strong community representation on both of their committees, they say, there has never been a breach of confidentiality.
"This is really just a red herring," says Peters. "If you set out with a common understanding of rules and principles, and you pick the right people both inside and outside the institution, this is not a problem," he says.
Peters also favors treating community members with a special touch. Kaiser community members routinely are given first choice at attending off-site conferences that are paid for by Kaiser, for example. "Find ways to tell these members that you really understand and value their commitment," he says.
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