By Pierre Leichner, MD, FRCPC
BC Children’s Hospital, Vancouver, British Columbia
Reprinted from Eating Disorders Review
September/October 2004 Volume 15, Number 5
©2004 Gürze Books
At our hospital, we have developed a different approach to treating inpatients with eating disorders. With it we have been able to do away with some coercive methods once thought to be essential for care and recovery of severely ill patients.
After an initial assessment in the BC Children’s Hospital Eating Disorders Program, a youth with a severe eating disorder may be referred to our Intensive Treatment Service (ITS). She and her family will then undergo pre-care interviews. During these interviews, the content of the treatment program and the expectations from her and her family will be carefully detailed and discussed. She will be told that we do not use nasogastric tube feeding or nutritional supplementsand that, with our support, she will be expected to complete all her meals. She will also be told that, unless medically indicated (and this is rare), we do not use bed rest or wheelchairs, and she will participate in supervised physical activities. Finally, she and her parents will be reminded that her participation is voluntary and she will be able to leave if she feels it is not helpful.
This program has been very successful, according to the feedback we receive from patients and families, and the ITS has a waiting list. Patients gain weight (when necessary) at a rate of approximately 1 kg (2.2 lb) a week, just as before, when nasogastric tube feeding and bed rest were utilized. Almost all patients eventually decide to participate. However, others are sometimes followed in our outpatient clinic for weeks before they arrive at that decision.
Having worked in other programs, I do not believe that the patients in British Columbia are any different from those elsewhere in North America. Then, how can one explain why this approachwhich is very different from one I myself may have taken 15 years ago is as effective as more standard treatment and is clearly appreciated by patients and their families?
The Culture and Practice of Medicine
Most of us are quite comfortable discussing how the media participate in the development of eating disorders. What we have been much less conscious about is how the culture and practice of medicine may have contributed to the development and treatment of eating disorders.
The following exploration is not meant to be critical or judgmental of past and current approaches to treating patients with eating disorders. It is also too brief to do justice to a fuller discussion of this issue. It is meant, rather, to encourage clinicians to review and consider their approach to treatment.
Why have we used coercive approaches, including nasogastric tube feeding? First, by discouraging and/or minimizing the importance of self-control for these patients, we gave ourselves the authority and logic to enforce involuntary refeeding. Second, there are often medicolegal and political pressures on physicians to act quickly. This comes partly from fear of the worst-case scenario if someone does not stop losing weight. It also arises from the constraints on healthcare resources to treat patients as rapidly as possible. Nasogastric tube feeding fits right into this pattern: it is controllable; staff members are available and trained to administer it in most institutions; and the outcome in terms of weight is predictable. The procedure reassures us and allows our administrators accountability for services.
Also, we now have a better appreciation of the “benefits” a patient may believe an eating disorder brings to her life. These benefits can be valued, particularly early on in the illness, prior to the accumulation of the negative side effects. These perceived benefits are real and not delusional, although they may seem overvalued to us. Acknowledging and exploring them are often the first steps to establishing the therapeutic alliance that will be needed when the benefits wear outas they will eventuallyfor the majority of patients
Costs to Patients
But what may be the costs of nasogastric tube feeding to the patients since most, with trained support, can refeed themselves without it? First, the process may further erode their self-esteem or sense of self-sufficiency. For some, it may reinforce an attitude of passivity toward treatment, while for others it may strengthen their resolve to oppose it. Although at times the procedure is consensual, sometimes it can be traumatic emotionally. It may therefore be possible that in some cases this process may promote chronicity.
The option of training and providing staff for meal support therapy may not be welcomed by healthcare administrators, but this can be achieved on an outpatient or day hospitalization basis, which may make it more economical. To facilitate this, we have produced two manuals and videos (one aimed primarily at professionals, and one for families and friends) on how to provide meal support for patients. (See further information at the end of the article.) But the construction of eating disorders by Western medicine is not limited to this issue.
What are the consequences of the Diagnostic and Statistical Manual (DSM) systems? The insidious and global acceptance of the American Psychiatric Association’s DSM as a way of diagnosing mental illness as a series of categories has also had unexpected consequences. At the very least, whenever people are grouped or labelled, we react by either accepting membership in the group or by rejecting this imposed membership. Specifically, for some patients this could promote valuing group membership, such as in pro-anorexia web sites or for some it could augment denial. Also, categorization allows caregivers to step aside and think, “I am not like them, they are sick.” This stance facilitates the caregiver taking over for the person. Categorization by criteria may also account in part for the growth in comorbidities thought to be associated with eating disorders.
Then, what may be the ‘benefits’ to high recognition of comorbidity?
Particularly with younger patients, this has to be carefully thought out because developmental factors on top of the psychological complications associated with malnutrition can easily add up to meet criteria for many comorbidities. When comorbidities such as mood and anxiety disorders are diagnosed, psychopharmacologic interventions are available. This may soothe the anxiety of a practitioner looking for nonpsychological forms of intervention and may also help justify the need for treatment to the administrators. However, the recent awareness of the dangers of selective serotonin reuptake inhibitors (SSRIs), and the lack of sufficient evidence of their efficacy for treatment of depression in youth, have limited the use of these medications.
Should the Hospital Be the Primary Site for Treatment?
Finally, a brief word about the setting where we administer treatment. Creating and maintaining a healing environment staffed by competent, consistent, and caring professionals is a continuous challenge in today’s healthcare system. For most of us, these settings are where we were trained and where our colleagues, students, and researchers work. But, are large medical institutions the best or the most economical places for treating eating disorders? And, what if these settings foster the development of a dependence on medical interventions as well as delay the patient taking responsibility for their recovery? Since an eating disorder usually demands long-term treatment, there is no evidence that the residential component need be in an institution. It would then make sense to move the treatment into the community, to minimize stigmatization, to reinforce self-responsibility, and to decrease the disconnection from the community some patients experience. Of course, there are, and will continue to be, situations that are imminently life-threatening in which we need to act and hospitalize.
Through mostly qualitative research on patients and families’ views of illness and recovery, we are starting to consider different ways of understanding eating disorders and their treatment. The importance of the “wish to change,” the reconnection with meaningful others, including therapists, acceptance of the self, and maturation for youth are emerging as consistent messages. The main theme seems to point toward patience and collaboration in our interventions. Hence, we owe it to our patients and our families to pay heed to the words Adelaide Nutting, a nurse, wrote in 1925:
We need to realize and affirm anew that ‘medicine’ is one of the most difficult of arts. Compassion may provide the motive, but knowledge is our only working power. Perhaps, too, we need to remember that growth in our work must be preceded by ideas and that conditions which suppress thought must retard growth. Surely we shall not be satisfied in perpetuating methods and traditions. Surely we shall wish to be more involved in creating them.
The videos mentioned in the article are available by writing to: Program Secretary, Eating Disorders Program, DC Children’s Hospital, 4480 Oak Street D411, Vancouver, BC Canada V6H 3V4, or by e-mail at: firstname.lastname@example.org.