Center for Biomedical Ethics
Ocean State Ethics Network (OSEN)
WHAT IS THE OCEAN STATE ETHICS NETWORK?
Jay M. Baruch, MD
A breakfast meeting took place at the Brown University Faculty Club on February 6, 2003. The goal was to establish a regional ethics network. We hoped ten or so individuals would take time from their schedules to exchange ideas on how to improve the practice of clinical ethics in the region. However, the "intimate" discussion included approximately forty people. The enthusiastic response proved that participants on hospital ethics committees (HECs) in Rhode Island believed there was a need for a collaborative forum for persons challenged with the task of delivering ethical healthcare. Once agreement was reached on the concept, the group faced practical questions relating to identity, function, and implementation: What is an ethics network? How could an ethics network serve the state of Rhode Island? What should be its focus? How would it sustain itself? Who are its members?
This paper will focus on the evolution of the 160-member Ocean State Ethics Network (OSEN), its activities, and future roles for this group on both a state and local level.
WHAT IS AN ETHICS NETWORK?
Ethics networks exist in various guises throughout the United States. They may exist on a statewide level, or serve a particular region.1-9 They vary in the number of affiliated hospitals and the formality or laxity of their connections. Some networks exist in rural or sparsely populated areas, where individuals with ethics training may be limited. In this context, an ethics network may serve as a regional repository, letting HECs in member institutions draw on experts. Others develop in response to specific needs as healthcare institutions address ethical issues in their communities. Some networks, such as OSEN, get willed into existence as a means for inter-institutional communication between HECs.
"IDEALLY, HECs PROVIDE A MORAL COMMUNITY IN THE HIERARCHICAL HOSPITAL STRUCTURE..."
HECs generally concentrate on three tasks: case consultation, education, and policy formation.1 2The HEC is a Joint Committee on Accreditation of Health Care Organizations (JCAHO)-mandated hospital committee: hospitals must have a mechanism in place for resolving ethical issues involving patient care and organizational practices. These committees are required to meet on a quarterly basis, but differ in their focus, level of activity, and authority within each institution.
Ideally, HECs provide a moral community in the hospital, a "safe space" where multiple parties can reflect on their own moral beliefs as well as the beliefs of others. Often, HECs must first help the involved parties identify the nature or source of the moral problem. Clarification of the moral dilemma is essential before the issues at hand can be placed within an ethical framework. However, persons participating on hospital ethics committees may not have the necessary training or tools for these endeavors.
Formal and informal surveys of HECs within Rhode Island revealed organizations functioning at varying degrees of sophistication. When we mailed invitations to the initial meeting, we asked the contact persons of the HECs to answer a short survey to get a sense of the regional baseline. Coincidentally, Bill Kirkpatrick, from The Miriam Hospital's ethics committee, had already initiated a survey of HECs in Rhode Island. Some met monthly, others met quarterly; some didn't engage much in clinical consultation, others had an active consultation service; some participated in the education of the larger hospital community, others didn't feel comfortable undertaking such a role. Nevertheless, practically all the HECs at the meeting were in a state of change, confronting problems, or undergoing self-examination. More importantly, some HECs were dealing with similar issues, or had experiences that were useful to others, except the infrastructure wasn't in place to encourage communication between committees.
At its inception, the overarching goal of OSEN was to enable HECs in Rhode Island to come together, educate one another, and take back to their institutions a richer understanding of the practice of clinical ethics. However, by necessity we broadened the scope. Our education symposia attracted non-members of HECs. Now, OSEN provides a platform that is open to all individuals engaged in the moral act of caring for others.
Would the ethics network be a formal or an ad-hoc organization? Should there be an executive committee, officers, etc, or should the group evolve naturally? There were cogent arguments for the need for structure. But there was a consensus that that group should be allowed to grow naturally over the next year. During this inchoate phase, Dr. Jay Baruch and Donna Goodnow, the coordinator at the Center for Biomedical Ethics, Brown Medical School, assumed responsibility as “point people.” OSEN now has a 10-person Board of Directors; representation includes physicians, nurses, administrators, a librarian, ethicists and a lawyer.
How often should the group meet? To start, members met quarterly. The meeting included an education component, lasting for 2 hours from 8am-10am. We established a listserv, hoping to spur on-going dialogue between formal meetings. At the moment, it serves primarily to disseminate information about OSEN events, but we hope it will serve as a vehicle to share ideas.
The network was established primarily for individuals involved in ethics consultation at regional hospitals, as well as for people involved in ethics education. However, there were many people involved in healthcare who should have a voice in such an ongoing project. Information about symposia were posted on the listserv, and members were encouraged to post flyers in their hospitals and to advertise through word-of-mouth. Medical students were informed of the events.
Each education session attracted people interested in the particular topic. Our first session, “Barriers to Advanced Directives,” drew persons involved in end-of-life care not working or practicing in hospitals. In this fashion, each event has broadened the diversity of the participants.
ETHICS NETWORK AND EDUCATION
The group decided that education would be the first objective of the network. Such an agenda would serve HEC members by establishing a basic fund of knowledge on issues relevant to the clinical practice of ethics consultation. It would also begin to establish the network as a resource for the healthcare community. These sessions were not supposed to be purely didactic; time was set aside for open discussion.
The first educational session (March 31, 2003) focused on barriers, myths, and misconceptions surrounding advanced directives. The panelists included Maureen Glynn, Assistant Attorney General; Dr. Joan Teno, Professor of Community Health and Medicine and a principal investigator in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT); and Mary Callahan-Cimini, Executive Director, Aging 2000.
On May 6, 2003, Bill Kirkpatrick, Director of Clinical Social Work for Lifespan Academic Medical Center, presented preliminary results from his “Ethics Committee Benchmarking Project,” a survey of HECs at fourteen hospitals in Rhode Island and Massachusetts. During the dialogue, three immediate needs were identified: ethics consultation; medical futility; and brain death.
At the next symposium (June 26, 2003) “Ethics Consultation: Nuts and Bolts,” Dr. Jay Baruch provided a brief overview on the process of ethics consultation, discussing the aim of clinical ethics consultation, the nature of “ethics expertise,” the essential elements of ethics consultations, the different models of ethics consultation, and pitfalls that can undermine a consult. Following the talk, representatives from three HECs presented two cases: one consultation that went well, and one that went poorly.
At “Medical Futility: Clarity or Confusion?” (October 2, 2003) discussants focused on the discord when the core conflict over “futility” involves differences in personal values and goals. This session also raised the importance of institutional futility policies. These cases can generate intense emotional volatility from all sides; a coherent, transparent process ensures that cases will be addressed in a similar objective manner.
The Rhode Island Ethics Network joined with the New England Organ Bank for “Dead, or Dead Enough,” (December 4, 2003). The Organ Bank sought to promote non-heart-beat cadaver donation (NHBCD) in Rhode Island. Cardiac death may appear straightforward, but when tied to organ donation poses areas for ethical inquiry. For example, after what minimal interval from the moment the heart stops can death be declared? Does that equal death of brain tissue? Can end-of-life care, withdrawal of medical treatment, and respect for the dying be separated from the organ procurement process? What is the role of ethics committees in hospital NCHBD protocols? Dr. Stephen T. Mernoff, Medical Director, Neurorehabilitation Program, Rehabilitation Hospital of Rhode Island, reviewed brain death criteria. Paul E. Morrissey, MD, Assistant Medical Director, New England Organ Bank, and chief of transplantation surgery at Rhode Island Hospital, spoke on organ transplantation in Rhode Island.
At "Negotiating Moral Differences: When Doctors and Nurses Disagree" (March 4, 2004), Cynthia Padula, PhD, RN, CS, Lynn Pasquerella, PhD, and Sheri Smith, PhD, explored the dynamic between doctors and nurses, how their roles inform their perception and reaction to ethical problems, and strategies for improvement.
In "Limitations of Surrogate Decision-making: A Modern Day Dax" (June 3, 2004), Tom Bledsoe, MD, the acting director of the Center for Biomedical Ethics at Brown Medical School, discussed the case of a man badly burned in a fire. The man, estranged from his family, had not designated anyone to speak on his behalf. He was heavily sedated and incapable of making decisions. The patient's chances for a good functional recovery were promising, but required a number of surgical procedures followed by extensive physical and occupational therapy. Representatives of area HECs addressed salient aspects of this case; e.g., 1) What counts as due diligence in information-gathering when families provide a "substituted judgment” on the patient’s behalf? How does a health care provider access this process? 2) To what extent does a patient's history (of substance abuse) put him at risk for negative bias? 3) How do surrogates and clinicians apply a patient's previously expressed wishes to an actual situation? 4) Is it ever appropriate to just treat according to what the clinician believes would be in the patient's best interest? 5) What is the relevance of prognosis in substituted judgment?
IMMEDIATE GOALS OF THE OCEAN STATE ETHICS NETWORK
The OSEN will potentially serve as a public, non-partisan forum that brings together many individuals involved in health care who may otherwise trudge alone through moral dilemmas. It will raise the sophistication of HECs in Rhode Island, develop standards, and encourage individuals from different institutions and backgrounds to talk and learn from each other.
The future of OSEN will depend upon continued interest and funding. The listserv includes over 160 members, from a range of academic and professional disciplines. With a basic infrastructure in place, we are exploring funding opportunities. For the moment, OSEN has a home with the Center for Biomedical Ethics at Brown Medical School, through which we have been grateful to receive funding for the educational events, as well as administrative and clerical support.
Brown Medical School lent credibility to the network in the development phase in several respects: Ed Beiser, JD, PhD, then-Director of Brown Medical School's Center for Biomedical Ethics, pledged the Center’s support; and Dr. Richard Besdine, Acting Dean of Brown Medical School, eloquently validated the importance of this project and the value of clinical ethics during his introductory remarks at the first meeting.
We recently received a mini-grant from the Rhode Island Foundation, which will allow us to expand our educational scope and invite experts from outside Rhode Island to participate in OSEN events. We're exploring other funding opportunities and contemplating institutional and individual dues.
The educational agenda will evolve along with the needs of OSEN's members. Nurturing the growth of HECs will always be the driving purpose of the network. That process includes educating developing ethics committees or new members of established committees, as well as providing resources and advice to existing HECs so they can mature and become comfortable with the many complex tasks expected of them. Through educational events we hope to foster this notion of a "moral space," and perhaps, by extrapolation, generate an ambient ethical climate that will permeate healthcare institutions in Rhode Island and promote the identification, analysis, and comprehension of moral dilemmas as a healthy part of clinical practice.
We will continue these quarterly education symposium, approved for physician CME, nurse CEU, and social work CEU (pending) credit. We hope to stage smaller education sessions targeted at specific groups.
Through the listserv we hope individuals will engage in an on-going dialogue, share information (examples of futility policies, for instance) and present difficult cases. Our website will include information from the education symposia, a listing of future forums presented by OSEN as well as other related events throughout the state, medical ethics topics, citations of interesting articles, and a directory of members. Thanks to the work of Tovah Reis, Medical Library Coordinator at Brown University, individuals will be able to use this website to search the medical ethics literature. We hope the web site will eventually develop into an online journal for patients and their families.
POSSIBLE FUTURE ROLES
Ethics networks aren't limited to education functions. Depending on its growth, organizational credibility, and acceptance by institutions within Rhode Island, OSEN can serve as a resource for consultation or mediation. A growing literature advocates the role of extramural ethics consultation, especially in cases where patients (or families) have lost trust in the healthcare providers or the institution.3 A neutral, third-party can often mediate a resolution by asking questions that were not raised, or explaining the medical facts and options in a different manner, or getting the stakeholders to concentrate on the issues.4
Extramural ethics consultation or committees have proven worthy in those environments that may not have ethics committees. HECs usually address in-patient moral issues. However, clinical ethics isn't limited to hospitals or in-patient units. Collaboration between National Kidney Foundation of Kansas and Western Missouri and Midwest Bioethics Center has resulted in a multi-disciplinary ethics committee that provided consultations and organized educational seminars focused on patients with end-stage renal disease.5 Long term care facilities, group homes, home care agencies, hospice, organizations that provide psychiatric care may also benefit. (As of this writing, there are preliminary discussions between OSEN and Home and Hospice of Rhode Island)
There exist opportunities for community outreach as well; for example, providing a forum on end-of-life issues and advance directives with nursing home residents or senior citizens, or hosting a dialogue on cultural issues in health care with the ethnic communities in the state.
The Ocean State Ethics Network has the capacity to serve a large community. What started as an organization of HECs has expanded because there appears to be a pressing need for this type of forum that brings together diverse individuals involved in the moral act of caring for patients.
Jay Baruch, MD, is Clinical Assistant Professor of Emergency Medicine, Brown Medical School, on the Faculty, Center for Biomedical Ethics, Brown Medical School and Director, Ocean State Ethics Network.
1. Brody H, Weber L, Fleck L. Medical ethics resource network of Michigan. Cambridge Quarter Healthcare Ethics 1992;3:271-6.