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MA agency’s group still in infancy’
Since reorganizing its bioethics committee in early 2000, the Visiting Nurse Association (VNA) of Southeastern Massachusetts in Fall River has made great strides, pulling together a diverse group of members and educating them on clinical ethical issues.
Cynthia Cardoza, MS, RN, president and CEO, says the committee has provided a valuable service for staff who need guidance on ethical questions. And it has brought the community into discussions of important issues, both through representation on the committee and presentations that invited outside groups to join discussions of issues such as death and dying.
But even with this early success, Cardoza considers the effort to be in its infancy and still sees areas for improvement. In particular, she says, the committee has to provide enough interest for volunteer members to keep coming to meetings — even though the agency often doesn’t have a steady stream of ethical dilemmas to discuss.
"I guess as the administrator, I should be grateful for that, but it presents a problem for us because we’re trying to keep the people interested in serving on the committee," she says. "They like to come in and hear a juicy problem, and we don’t always have one."
Cardoza is considering ways in which the committee can pose hypothetical situations for members to discuss to provide ongoing interest and prepare the agency for issues it hasn’t yet encountered.
Committee reinstituted after mergers
Cardoza says the VNA previously had another ethics committee that struggled to find things to do and fell by the wayside as the agency underwent a number of mergers.
After the mergers, she says, it became clear the Joint Commission on Accreditation for Healthcare Organizations found the ethics committee process to be a useful mechanism for handling ethical issues.
"So we put it back together and reorganized in early 2000," Cardoza says.
From the beginning, she says, the decision was made to have the committee focus only on bioethical issues — those relating to care, as opposed to business ethics issues such as conflict of interest and billing.
Business issues are handled through the VNA’s corporate compliance program. Cardoza says the skills and education needed for each set of problems are so different that they wouldn’t make sense to have one group discussing both.
"You’d be looking for different expertise, a different set of skills," she says. "I think it kind of mucks up a committee if you have both the business ethics and the clinical or medical ethics being handled by the same people. We said from the very beginning that we wanted this to be a discussion of clinical issues and patient-centered issues, not business issues."
Diversity may be the key
The VNA invited committee members from a wide range of disciplines — not just home health nurses, aides, hospice employees, and administrators associated with the organization — but a representative from the VNA’s board of trustees, physicians, clergy, rehab services and representation from the risk management department of a local hospital.
Cardoza also has sought out community representation — tapping former board members, a member of a Friends of the VNA support organization, and a representative from a local facility for terminally ill indigent patients.
She hopes to add even more members from outside the VNA and is particularly hopeful she can recruit an ethicist to join the committee.
"The concern I have with the committee as comprised is that I don’t think we have a group that is comprehensive and educated enough in terms of ethical issues to deal with hard problems should they occur," Cardoza says. "I think we have a bunch of people who have an interest and are dabbling in ethics, but we need a lot of education. If we had someone such as an ethicist, that would help us."
One area not represented on the committee is the law; Cardoza says she purposely has refrained from inviting an attorney to join.
When matters come up that could have a legal component, Cardoza runs them by the agency’s own attorneys. In rare cases where she’s unsure, she discusses the issues with contacts she has in hospital risk management, contacts she developed by serving as a member of the local hospital’s ethics committee.
"We’re not a hospital-based agency, we’re not a subsidiary of a hospital," she says. "But I’ve developed relationships with people serving on the ethics committee. They don’t exist to hear our cases, but if I have a problem, they’ll walk through it with me."
The purpose of the ethics committee is to provide a forum for the discussion of ethical issues and present recommendations to the administration and VNA board. The board has final approval over all decisions.
Currently, the committee is led by the VNA’s hospice director, although Cardoza says that ideally, she’d like to see an external member lead the group.
Practical decisions gleaned
The committee’s mission statement outlines the group’s role in helping the VNA to achieve its philosophy of supporting patients’ rights to self-determination, comfort, and dignity.
The ethics committee serves in a case consulting role, often after the fact, listening to the details of a particular ethical issue raised in daily practice and providing recommendations on how it or similar situations should be handled.
• The committee heard about a case in which a home health nurse felt threatened by a member of a patient’s family, although the patient personally caused no problems and truly needed care.
The agency eventually worked out an agreement with the patient requiring that the relative be absent during the nurse’s visits, Cardoza says.
• The committee called a special emergency meeting last year in the wake of what VNA staff believed had been a deliberate overdose on the part of a patient’s caregiver. The committee affirmed the way the nurse handled the situation. Most of the cases the committee deals with tend to come from the hospice side of the organization, Cardoza says.
"We keep reminding people that it isn’t a hospice committee, it’s an agency committee," she says. "But the fact of the matter is, just like on the hospital committee, where most cases come from intensive care here, most cases come out of hospice. Not only do the [hospice staff] care for their patients, they also care for the palliative care patients from the VNA."
Cardoza says hospice nurses also have a good understanding of the ethics committee and have made use of it. She’s had more difficulty getting the home health nurses to participate by referring cases to the committee. She says the committee would like to do a yearly educational program for all VNA staff to help them recognize ethical dilemmas so they know to ask for help with them.
Keeping members interested
An equally challenging goal has been to keep the volunteer committee members engaged enough to keep coming back to meetings and participating, even when there aren’t interesting cases on the agenda.
Fighting disinterest can be a problem with any committee that doesn’t have authority to make decisions on its own, Cardoza says.
"Sometimes they wonder what they’re there for: Why am I taking the time to be here?’" she says.
Based on advice she’s gotten from other agencies, her plan is to keep interest high by presenting hypothetical situations, covering issues that the VNA hasn’t yet encountered but conceivably could in the future.
One such possible topic? Assisted suicide, which Cardoza says patients do occasionally ask about.
"They make statements that lead you to believe that’s the direction they’d like to head in," she says of the patients. "It’s something that we need to talk about."
While the agency obviously would have nothing to do with an assisted suicide, Cardoza says it currently has no policy outlining what staff should do in the event that a patient discusses it — something the ethics committee could help to formulate.
"One of the things we talked about was finding answers for people who are terminally ill," she says. "If you can get your message out that there are alternatives, that hospice is an alternative and that pain control is possible, it could help."
Another area she hopes to discuss is how to deal with the dilemma of accepting high-cost patients into service at a time of dwindling resources.
Because the VNA is a not-for-profit agency, it doesn’t have the same financial pressures that for-profit agencies may have. But there’s still the challenge of balancing a not-for-profit mission with the realities of life under the prospective payment system.
Cardoza says that providing those types of "what-if" scenarios at every meeting will help address the needs of committee members and better prepare the VNA for coping with tough issues.
The committee already has passed out reading materials on subjects such as confidentiality for patients with HIV and the role of tube feeding in cases of advanced dementia.
There also have been outreach efforts to the community, notably one focused on the recent PBS series by Bill Moyers about death and dying, "On Our Own Terms: Moyers on Dying."
The VNA showed the series and then held a public forum so that the community could discuss issues raised in the presentation.
Start slowly, educate members
Cardoza offers these other suggestions for operating a successful ethics committee:
1. Start slowly.
Cardoza says one mistake she believes her agency made early on was leaping too quickly into the nitty-gritty of ethical cases without first working out how the committee should operate and educating members.
"I think [committees] shouldn’t plan to do any case presentations for the first year and plan their agendas around talking about what the committee is supposed to do," she says. "Figure out what you need to learn. Spend the first year learning how this committee should operate before even attempting to bring anybody in to consult.
"That way you don’t set up your expectations," Cardoza says. "I think that’s where we went wrong, we just jumped right in taking cases."
2. Commit to a reasonable meeting schedule.
The VNA’s committee meets quarterly: "I don’t know what we’d do if we met more often," she says. Meetings are held in the late afternoon, in an effort to accommodate as many members as possible. Physician members are particularly hard to get to meetings, Cardoza says. "You’ve either got to do it early in the morning if you want those guys or you’ve got to do it at lunchtime and feed them, or you’ve got to do it at night."
Whatever schedule you choose, she is adamant that the committee should stick to the schedule. Canceling meetings because of a light agenda or because other events conflict sends the wrong message to members, Cardoza says.
"Once you start canceling meetings because other more important things come up, then you’re dead," she says. "If members see that your commitment isn’t there, they aren’t going to want to make a commitment to you either."
3. Gather resources.
When dealing with a new committee, especially one that includes members who don’t have a lot of experience with ethical issues, Cardoza says it’s important to provide adequate educational resources. The VNA currently is building a resource library for the agency and its ethics committee. The committee has solicited suggestions on literature that can help members and is slowly stocking up on needed journals and other publications.
In her role as a member of the hospital’s ethics committee, Cardoza says she regularly receives a large amount of reading assignments and finds them extremely helpful.
Two suggested publications from Cardoza: The Hastings Center Report, from the Hastings Center on Bioethics [www.thehastingscenter.org or (845) 424-4040] and The American Journal of Hospice and Palliative Care [www.pnpco.com or (781) 899-2702].
Cardoza says that while the VNA’s ethics committee still has a long way to go before she’ll be satisfied with it, she’s reassured by knowing that other health care providers have had similar problems getting their ethics programs up and running.
Even the hospital’s ethics committee, one she sees as successful, spent a lot of time establishing a workable structure and working to ensure meetings would be of interest to the members.
"I think it’s hard," she reports. "I haven’t talked to too many people who’ve found it easy."
• Cynthia Cardoza, President and CEO, Visiting Nurse Association of Southeastern Massachusetts, 502 Bedford St., Fall River, MA 02720. Phone: (508) 676-8251. Fax: (508) 646-4017. E-mail: ccardoza@vnasm. org.