A Call for Advocacy and An Exploration of Ethical Challenges

Highlights of the AED Annual Meeting

Reprinted from Eating Disorders Review
July/August 1999 Volume 10, Number 4
©1999 Gürze Books

The annual Academy for Eating Disorders conference, held in San Diego June 11 and 12, featured clinical teaching workshops, plenary sessions, research presentations, and practical workshops. Two of the many highlights of the meeting included a call for advocacy for eating disorders and a thought-provoking discussion of difficult ethical issues in treatment.

Getting the word out about eating disorders

In a keynote address, Dr. Walter Kaye, professor of psychiatry at the University of Pittsburgh School of Medicine, Western Psychiatric Institute and Clinic, challenged AED members and others to get the word out about the seriousness of eating disorders. Dr. Kaye also outlined new findings showing inherited susceptibilities to eating disorders.

Dr. Kaye cited a New York Times article in which Tipper Gore said she favors full equivalence or parity in coverage for the recognized major mental health disorders, which she identified as schizophrenia, bipolar or manic depressive disorders, and major clinical depression. “Where are the eating disorders?” asked Dr. Kaye, “and why aren’t they mentioned?” Dr. Kaye pointed out that anorexia nervosa has the highest death rate of any psychiatric illness and that it is second only to schizophrenia in the number of hospital beds that are occupied. Further, he said, parity laws would require insurers to pay for all psychiatric treatment or care. Eating disorders need to be “on the table” when these kinds of issues are discussed, Dr. Kaye stressed.

New data may help de-stigmatize eating disorders

Dr. Kaye also suggested ways that new neurobiologic information can support the needs of people with eating disorders. First, he said, it is very important to include eating disorders as severe mental illnesses, which is the key to getting treatment paid for by managed-care programs. Another advance will be developing new medications and better psychotherapies that target susceptibilities that may cause eating disorders. New genetic information will help de-stigmatize eating disorders, he said, adding that understanding that certain people have certain susceptibility factors will help increase advocacy and support for these disorders. Advocacy may also help develop new psychotherapies.

Grassroots efforts are needed

Although nonprofit organizations have done a great job thus far, Dr. Kaye told the audience that grassroots advocacy is a major key to getting the word out about eating disorders. He pointed to the success of organizations such as NAMI (National Alliance for the Mentally Ill), which has nearly 200,000 family members, more than 1000 affiliates, and a focus on severe mental illness. Another example is NARSAD (National Act for Research in Schizophrenia and Depression), which was founded 13 years ago, and which recently raised almost $83 million to fund more than 2,130 grants. An advocacy group for eating disorders could raise several million dollars to support better treatment for people with eating disorders.

Dr. Kaye also called for an alliance among the national eating disorders organizations, particularly EDAP, NEDO and ANAD and ABBA, to pool resources and energies. In addition, he urged clinicians to help mobilize concerned citizens to push for special attention to eating disorders among policy makers (the insurance industry and medical and scientific communities). One important goal for such advocacy will be increased awareness among insurance companies that eating disorders are serious conditions that require appropriate coverage for diagnosis and treatment.

Finally, Dr. Kaye noted that in one study only about one-third of anorexic patients were discharged at 90% of healthy body weight. He added, “Horribly, about a third are discharged at less than 85% normal body weight.” This message should get out, he said, along with the message about why it is so important to keep people in the hospital under structured care until they reach a healthy body weight.

Ethics and the treatment of eating disorders

A special plenary session moderated by Dr. Joel Yager, professor of psychiatry at the University of New Mexico School of Medicine, explored “Ethical Issues in the Treatment of Eating Disorders.” Three panel members discussed forced treatment, the issue of recovered eating disorders professionals treating people with eating disorders, and issues concerning treating patients with chronic or terminal eating disorders.

Forced treatment

Elliot Goldner, MD, Assistant Professor, Department of Psychiatry, University of British Columbia, and Director, Provincial Eating Disorders program, St. Paul’s Hospital, Vancouver, BC, presented an ethical decision-making framework for determining how and when to use forced treatment. Such an approach makes better sense than a formulaic method, he said, because each patient and each family is different. “Our aim is to try to do good, and to achieve a good outcome,” Dr. Goldner said. The decision involves asking whether forced treatment will actually do more harm than good and also must respect the patient’s rights and freedoms and her family’s rights to make this decision.

Few patients recover quickly

Dr. Goldner cited a 15-year prospective study by Strober et al, in which more than 75% of patients had made a full recovery from AN after 15 years. Of the remaining patients, 11% had at least a partial recovery after 15 years, leaving 14% of the original group who continued to have AN. Dr. Goldner pointed out that even with excellent treatment and outpatient follow-up, very few patients recovered quickly. As Dr. Goldner noted, a patient who is ill 5 years has a 28.9% chance of still being ill at 15 years. Someone who is still ill at 10 years has an 81.3% chance of still being ill at 15 years. He added that it is still not possible to predict what the long-term outcome will be for individual patients.

Dr. Goldner stressed that it is important to remember that there is a potential for harm in forced treatment and that clinicians must carefully consider the treatment decision before acting. “What we do is very important,” he said, “but the how is also very important.” A thoughtful decision-making process ideally includes the entire team of people who are doing the work because these are very emotional issues. The team should feel that they have a sound basis before they force any treatment. He also advised clinicians to explain the intent to do good, to make sure that the family members understand the rationale, and to be willing to negotiate. He also suggested avoiding punitive methods and balancing safety and economy, as well as preserving and promoting the patient and family’s autonomy. Finally, he advised, when planning forced treatment, get sound legal advice, since statutes and laws vary widely by jurisdiction.

‘Been there, done that’: When recovered professionals treat patients

The issue of recovered professionals is both “an elephant in the living room and an elephant in the closet,” according to Craig Johnson, PhD, Professor of Clinical Psychology at the University of Tulsa and Director of the Eating Disorders Program at Laureate Psychiatric Clinic and Hospital, Tulsa. The less we talk directly about it the more we end up talking around it, he said, and the less it is discussed, the more shame-based the issue becomes. Dr. Johnson estimated “conservatively” that about 30% of professionals have struggled with eating disorders themselves.

Dr. Johnson reported the results of his survey of recovered staff members at 10 treatment facilities. He telephoned 10 colleagues from large treatment programs (5 for profit, 5 nonprofit organizations) in the US, and asked a series of questions about how they dealt with this issue. He also checked with the AED and the International Association of Eating Disorder Professionals. The international group has a written a code of ethics about recovered professionals, while the AED does not yet have a well-defined policy, he reported.

Mixed reactions were the rule

Among the 10 treatment programs, 4 actively embraced the use of staff in personal recovery. In contrast, one organization actively avoids discussion of recovery because of a bad experience; instead they have subtle job interview techniques to determine if a professional is in recovery. Five of the institutions had mixed feelings—they were looking for good clinicians; if the clinicians had personal recovery that could be seen as an advantage, but they did not actively pursue this.

The groups interviewed estimated that the relapse rate among professionals was from 10% to 20%, and defined “recovery” as abstinence from binge-eating and purging for 1 to 2 years. Abstinence from binge-eating and purging was the easiest thing for them to talk about—almost everyone wished for normal weight, although the definition of “normal weight” was unclear. The issue of psychological recovery was extremely ambiguous, he reported and “seemed to fall to the eye of the beholder, or whoever was doing the interview.”

Since 1989, when Dr. Johnson joined the Laureate Clinic staff, 11 professionals with personal recovery from eating disorders had joined the staff; during the past 10 years, there have been 1 profound relapse and 1 minor relapse among these professionals, he said. Three other staff members had “wobbles,” or felt at risk for relapse. “I’ve learned that the less training the staff member has, the greater the risk of relapse,” he said. With less training, there is a much greater risk of problems with transference and countertransference, he added.

Advantages and disadvantages

There are clinical advantages and disadvantages to having staff who are in recovery, he said. The advantages include the hope, motivation, empathy, creditability, and understanding staff members can bring to treatment. The disadvantages include a very narrow perspective, inflexibility, and problems with boundaries. Dr. Johnson noted that the greatest vulnerability to countertransference and relapse among recovered staff members occurs when they work with patients who have sexual or physical trauma that is directly related to the eating disorder.

Recommendations for the future

Dr. Johnson recommended that, as the official organization for eating disorders, the Academy openly acknowledge that clinicians in personal recovery can make a significant contribution to the understanding of the etiology and treatment of eating disorders. Secondly, he feels that eating disorders professionals should offer guidelines to better define “recovery.” Third, he recommended that clinicians have broad-based training with adequate experience treating other Axis I and Axis II disorders. This will help guard against the tendency of young recovered clinicians to arrange their curriculum and training to narrowly focus on treating eating disorders. Finally, he said, recovered staff members have an ethical responsibility to monitor themselves in whatever way is necessary to ensure that their patients are receiving the highest quality of care.

The Chronically Ill Patient

Dr. Michael Strober, Professor of Psychiatry and Director of the Eating Disorders programs at UCLA, described some of the uniquely difficult and challenging aspects of treating patients who have had chronic illness, or those for whom the prospect of recovery is marginal.

Chronicity is not synonymous with treatment resistance, he said, explaining that treatment resistance is actually two separate phenomenon—avoiding treatment and the lack of responsiveness to treatment. About 10% of patients with AN will not recover: 5% will spend their adult life in a severely symptomatic state, and approximately 5% will die as a direct result of this disorder. “We can’t forecast or determine in advance who will recover, “Dr. Strober said, adding, “we know very little about the variables that prognosticate the natural course of any psychological illness.”

Understanding the interior domain of the patient has very important implications for how one approaches care, he said. Anorexia nervosa, at least in part, rests upon a foundation of extremes of temperament. He described these patients as living “a psychic life that is constrained in the most profound way, withered by the imperviousness of the individual to take anything from outside. To be in life in anorexia nervosa is to be utterly swamped by the incomprehensibility of what the individual experiences as an impossibly liquid, pulsating, dynamic of accommodation, collaboration, and interdependency.”

A nontherapeutic alliance

Care of the chronically disabled population, does not involve a therapeutic alliance he said, but a nontherapeutic one because there is no treatment for this end-stage disease, and there is an ill-defined, seamless boundary between the disabling and the restorative or protective aspects of illness. To the patient, the disease is existentially welcome, he said. It isn’t a matter of denial because patients know they have a miserable existence. The patient longs for freedom from the tyranny of her symptoms but it is as if she knows she will never achieve this. So the therapist is in the position of seeking nothing, expecting little, and deferring to the patient as to the objective of the time spent together.

A different paradigm for care

The chronically ill patient requires a different paradigm for care, he said, where one considers a fundamental shift in the balance of the relative cost of treatment against the anticipated effectiveness. In this paradigm of treatment, we do not treat, he said, but instead care for, stand by, and make up for disease, rather than offering treatment in the true or usual sense. Treatment is palliative, a holding management of carefully measured intensity. Further, he said, treatment of these patients requires an even-tempered manner, a tolerance for misery, a desultory pace of work, an acceptance of failure, and acceptance in some of the anticipation of death. A zeal for change can disrupt and destabilize, exacerbating symptoms.

Working with such patients poses unique qualities of transference and countertransference; unique and distinct from any other psychological illness, Dr. Strober explained. He added that it is work characterized by shared experience of passivity, impotence, tedium, drudgery, and failure. Despite this, Strober said, “We do this work because it is fulfilling; we are enriched by the experience that we offer patients. We are enriched by the evolution and growth of the soul in this work.”

Mary K. Stein, Managing Editor, contributed to this story.

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