FEWO Committee Report

CHALLENGES IN ACCESSING TREATMENT

The Committee heard about a very broad range of issues that act as barriers to treatment for individuals with eating disorders. Because of the severity of the illness and because of the benefit of early and appropriate intervention, witnesses stressed the importance of addressing these issues.[263]

A. Inadequate Training for Health Care Providers

One of the first (and often the most significant) impediments to accessing treatment is obtaining a diagnosis. In order to obtain a diagnosis, individuals exhibiting eating disorder symptoms must rely on their health care providers,[264] and, as the Committee heard, health care providers are often inadequately trained to diagnose eating disorders.[265] For example, physicians and other health care providers:

• may not be screening for eating disorders in patients who are not underweight;[266]
• may not refer patients whose blood work appears normal;[267]
• may attribute eating disorder symptoms to other patient characteristics, such as low heart rate or athleticism;[268]
• may not be aware of diagnostic tests that should be ordered for some eating disorder patients, such as bone density tests;[269] and
• may refuse to treat patients with eating disorders because of the complexity of their illness and the therapy time the patient and their family may need.[270]

Several witnesses also told the Committee that there is a lack of specialists trained to treat eating disorders.[271]

B. Lack of Treatment Programs

One of the most common concerns that witnesses raised with respect to treatment is the insufficient number of programs and the uneven distribution of programs across the country.[272] In fact, some witnesses said that patients sometimes have to be sent to the United States for treatment because the services they need are unavailable in Canada. Treatment in the United States, they noted, is significantly more expensive.[273]

Wendy Preskow, founder and chief advocate of NIED, shared the words of her daughter, who is living with an eating disorder:

You are changing the [eating disorder] world in Canada, and perhaps the only reason I ever existed was for you to create colossal change, but what about me now? It will be years before any such dream treatment facility will be brought to fruition in Canada…. They can check on my weight, and send me back into this world, and then I'm right back where I started as a little girl, scared of life and equally scared of death, scared of the unknown, and aging, and loss, and abandonment.[274]

Recommendation 18

The Committee recommends that the Government of Canada encourage provincial and territorial governments, due to the life-threatening nature of eating disorders and a shortage of treatment beds, to provide either in-patient care as needed for patients with eating disorders on a timely basis or to consider covering the cost of treatments available outside the province, including in the United States, with the goal that patients can access the critical care they need in a timely fashion.

Witnesses also expressed concern about the gap in services for individuals who are not “sick enough” to meet criteria for certain treatment programs, but who are nonetheless suffering.[275] Elaine Stevenson, whose daughter died of anorexia nervosa, has been involved in advocacy on behalf of people with eating disorders for many years. She remarked, “[t]o me, there is something inherently wrong with a public health care system that often only becomes available when someone is on death’s door.”[276]

This gap in service for individuals with mild and moderate cases of eating disorders is particularly problematic because research indicates that early intervention leads to the best treatment outcomes.[277] Further, treating only the most severe cases places an undue burden on hospitals, when community treatment programs can be very effective for many patients.[278] Dr. Wendy Spettigue, psychiatrist with CACAP, told the Committee that in her work at the Children’s Hospital of Eastern Ontario, the program received funding for “an in-patient program and a day treatment program,” but received no funding “for an outpatient program” and “outpatient therapists” despite the recommended treatment being “outpatient family therapy.” She spoke of the struggle for her program: “if we just treated patients in hospital who were medically unstable and we discharged them, they wouldn't get better” because “there are no community resources” to assist once they are released.[279] She elaborated: “if we’re only treating the most severely ill patients, then who’s going to treat all the others?”[280]

Andrea LaMarre, M.Sc. candidate at the University of Guelph, noted that in addition to a lack of programs, there is a lack of data about what programs are available.[281] Such data, if compiled and centralized, could help provide a more accurate picture of what services are currently available, and if they were publicly accessible, might assist people with eating disorders and their parents to find services.[282]

C. Inappropriate Treatment Programs

As discussed above, many witnesses noted that there need to be programs available to individuals with eating disorders of varying levels of severity. Witnesses also noted that treatment programs for patients with severe eating disorders should be geared to a specific population. For instance, Dr. Leora Pinhas, psychiatrist at the Hospital for Sick Children, described children as young as 6 who are admitted to in-patient treatment units along with 17-year-olds.[283] Dr. Carla Rice, Canada Research Chair in Care, Gender and Relationships, and M.Sc. candidate Andrea LaMarre argued that hospital care “should not be considered as the first course of action or the only appropriate response to eating disorders” because some patients might do better in other treatment settings.[284] For example, the Committee was informed that most patients with somatic disorders have a variety of treatment options to choose from, but for patients with eating disorders, there is often only one treatment available in their region, and if they do not respond to that form of treatment, they have no other options.[285]

D. Wait Times

Many witnesses addressed the protracted waiting periods for treatment that patients with eating disorders and their families face. Individuals can wait months between an appointment with their family doctor and a referral to a specialist, months for the results of an assessment, and again months for admission to a hospital program.[286] Dr. Wendy Spettigue, psychiatrist with CACAP, explained that long wait times can have serious implications not only for individuals, but also for the viability of treatment programs:

For 14 years I served as the psychiatric director of the program at CHEO. Two years ago we were faced with a one-year waiting list, which is completely unacceptable, given the severe medical and psychological complications of eating disorders in young people. Out of desperation, given that you can’t have a one-year waiting list for such sick kids, we just decided to close the program and all those one-year referrals on the waiting list were all sent back to their poor family doctors. We went through what’s called a “lean review” to try to figure out what we were going to cut in order to be more efficient. We're not going to take mild or moderate referrals to our program anymore even though there's nobody out in the community who will do it. Even though it takes two years for these kids to recover, we're only going to offer them nine months of therapy.[287]

Recommendation 19

The Committee recommends that the Government of Canada should work with the provinces, territories, and stakeholders to reduce lengthy wait times for admission to eating disorder programs across the country.

E. Insufficient Research

Elizabeth Phoenix, a nurse practitioner with CFMHN, noted that the effective treatment of eating disorders depends on high-quality research.[288] Such research can inform not only specific treatments, but also program development.[289] On a related matter, Dr. Monique Jericho, psychiatrist and Medical Director of the Calgary Eating Disorder Program, remarked that there are few guidelines and no standards for drug treatment of eating disorders.[290] She said that clinicians might try to treat some of their patients’ comorbid conditions such as depression and anxiety with medication, but that research is needed to determine if these treatments are effective or necessary.[291] Witnesses recommended conducting research with the goal of developing evidence-based national standards for appropriate clinical care.[292]

F. Additional Observations

Some witnesses raised additional challenges that present significant impediments to treatment. For instance, some witnesses argued that using weight as an admission criterion for treatment programs might exacerbate patients’ obsessive thoughts about weight.[293] Other witnesses explained that the very nature of eating disorders makes it difficult for individuals to seek treatment. Witnesses described the great ambivalence that some people with eating disorders feel about treatment;[294] while some may recognize that they need help, they may resist seeking treatment because their disorder makes them want to continue their disordered eating. Noelle Martin, a professor and dietitian who survived an eating disorder, explained as follows:

For a client with an eating disorder, this choice is hard. It is difficult to realize that the disease is killing them, because at first it gives them such a sense of control. The loss of control that follows can give them a sense of despair, leaving them unsure about where to turn or what they can do.[295]

Recommendation 20

The Committee recommends that the Government of Canada should work with the provinces, territories, and stakeholders to overcome the challenges in accessing treatment, including a lack of a centralized database of treatment programs, undertrained health care providers, an insufficient number of programs, and uneven distribution of programs across the country, long wait times for treatment, inappropriate treatment programs, and a lack of pan-Canadian, evidence-based treatment standards.

Recommendation 21

The Committee recommends that the Government of Canada consider developing consistent standards on clinical care treatment and wait times for people with eating disorders.

G. Suggested Approaches in Treatment

Witnesses suggested solutions for many of the challenges that people living with eating disorders face in accessing treatment. Below are some examples:

• ensure that health care providers are well trained on how to recognize symptoms of eating disorders and how to refer or treat patients, as appropriate;[296]
• incorporate sufficient materials on eating disorders in curricula used for training medical, nursing, psychology, psychiatry and other students in health care professions;[297]
• establish national treatment standards for eating disorders;[298] and
• ensure that timely, evidence-based treatment is available to patients across the country.[299]