Status of Women Committee on Feb. 12th, 2014

[Stella Ambler, Conservative, Mississauga South, ON]

Let's say they figure it out; they see that food is not being eaten, or it's being thrown away. Is there something they can do, or do they have to just immediately go and see a medical professional?

[Joanna Anderson]

I don't think they need to immediately go to a medical professional, but you know....

Ms. Martin is a dietitian, so she'll be able to tell you very clearly that the data shows that eating a family meal together is really helpful. Eating with your family, everyone sitting together, has been shown to lower rates of substance abuse, teen pregnancy, eating disorders.

I think it's also about talking to girls about what real women's bodies look like. Women have hips, and they have breasts, and they have curves. We aren't all meant to be stick thin. Respecting your own set point and your genetic makeup is not a message that most young girls are getting. They're getting the message that if they try hard enough, they can have a certain body type, and that's just not true.

[Stella Ambler, Conservative, Mississauga South, ON]

Thank you so much.

[Terence Young, Conservative, Oakville, ON]

Thank you.

Joanna, could you please tell the committee what should be the minimum standard of care for women and girls with eating disorders?

[Joanna Anderson]

Once someone has been identified as being at risk, the minimum standard of care should be that you have access to a doctor who understands eating disorders, who understands the diagnostic criteria and the treatment options.

You should absolutely have access, if needed, to a psychiatrist who can assess for such co-morbid conditions as anxiety, depression, or a trauma-related disorder. You should have access to a therapist to work through some of the cognitive distortions around eating disorders, and have access to a dietitian to help you work through a food plan that will get you to a healthy weight for your body.

[Terence Young, Conservative, Oakville, ON]

Should an in-patient program be part of that, if necessary?

[Joanna Anderson]

Absolutely.

[Terence Young, Conservative, Oakville, ON]

Dr. Martin, do you have anything to add to that list?

[Noelle Martin]

Ms. Anderson has covered the bases, absolutely. When we think about access to care, we have to remember that an individual who has an eating disorder may also have very limited funds to pay for what would be ideal. They may not have the ability to maintain a job because of how preoccupied they are in terms of the eating disorder. They may be suffering from—

[Terence Young, Conservative, Oakville, ON]

Thank you. I have only 40 seconds, and I'd like to ask Joanna one more question.

Should parents with little children be considering, because of the commercial messages, taking television and magazines right out of their house?

[Joanna Anderson]

I don't know that taking TV out of the house is a sustainable long-term solution. I think it's about teaching your children that what they see on TV is not real, it's an image; that images in magazines and on the Internet are tampered with; and that striving to have a body that looks like what you're seeing on TV will send you down the wrong path, because even the models don't look like that.

So I think media literacy and training are also important. I would make that as a recommendation to this committee, that it would be within the purview of the federal government to add some media literacy and training to a national awareness campaign.

[Terence Young, Conservative, Oakville, ON]

Thank you.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much for your highly informative presentations and for the recommendations you made to the committee.

Ms. Anderson, you included several statistics in your presentation. You said that this issue affects young people and older people. We have asked you to provide additional information. It would be nice to have more details about this as well as any information you think the committee would find useful.

[Joanna Anderson]

I'll happily do that.

[The Chair, NDP, Hélène LeBlanc]

Thank you.

The meeting will be suspended for a few minutes to get the next witnesses on the line.

[The Chair, NDP, Hélène LeBlanc]

We will reconvene the meeting.

The witnesses are with us by videoconference. First we will hear from Dr. Monique Jericho, psychiatrist and medical director of the Calgary Eating Disorder Program. We will also hear from two witnesses from Guelph University's Department of Family Relations and Applied Nutrition: Dr. Carla Rice, Canada Research Chair of care, gender and relations, and Andrea LaMarre, a master's of science student.

Welcome. Each organization will have 10 minutes to present.

Dr. Jericho, you may start.

[Dr. Monique Jericho, Psychiatrist and Medical Director, Calgary Eating Disorder Program, Alberta Health Services]

Thank you.

Thank you, Madam Chair and members of the committee. I very much appreciate this opportunity to speak to you today about the matter of eating disorders. It's a subject that I have devoted the first five years of my professional career to.

I speak to you today principally from the perspective of a clinician. I spend most of my working hours engaged in the treatment of eating disorders. On any given day, I meet with patients of all ages who are suffering with these often severe and complex conditions. I also meet with worried, desperate parents. I meet with exhausted spouses. I meet with the siblings and children of those who are struggling to recover from or simply to cope with eating disorder symptoms. I deal with a lot of fear and anger, as well as confusion and denial.

As you have heard in your inquiry thus far, eating disorders are amongst the most lethal of all mental health conditions. They affect young women, significantly distorting what could otherwise be a normal developmental trajectory through adolescence, thereby establishing the conditions for further mental illness throughout their lives. These conditions are almost never present without significant co-morbid symptoms, principally those of depression and anxiety, but self-harm, substance abuse, and other impulse control problems are also often present.

What is less measurable here, and by far more meaningful to the individual, is the extent of the suffering these diseases exact on patients and their families—the broader toll on society. From my unique, and I would say, privileged vantage point, I can tell you that the suffering created by eating disorders is immense.

Through my affiliation with the University of Calgary, I provide education and mentorship to medical students and resident physicians at various levels of training. In my lectures, I generally begin by explaining what eating disorders are not. They are not the result of personal choice, they are not glamorous, they are not minor, they are not phases, and they are not the result of bad parenting, etc.

I often feel like I'm starting at a deficit. I'm working against a powerful media force, and in some cases, an already rigid set of societal beliefs about what eating disorders are and what people with eating disorders are like. Without excessive digression, I will point out what is obvious.

We live in a time and place where female beauty is often equated to power. Sadly, the belief is that to be beautiful is to be thin, so to the fresh eager ears of medical students, it's often difficult for them to truly appreciate what is so bad about the pursuit or attainment of thinness.

I believe that this is where some of the issues in treatment begin, at the beginning. All stakeholders, and in particular, all physicians need to understand what eating disorders are. They need to be taught how to diagnose these conditions and generally how to manage them until people can access comprehensive specialized treatment centres.

Beyond this, they need to be prepared to deliver a diagnosis that the patient may not like or may deny. In other words, they need to be prepared for the discomfort that is often required in treating a patient who is often unable to be compliant or who may not have the investment in the diagnosis. They need also some preparation in how to talk to parents and partners about the condition, because without this alliance a physician's power is reduced to the few moments they spend with a patient in their office.

Knowledge of eating disorder management must extend beyond the realm of family physicians, pediatricians, and psychiatrists. Almost all practising physicians will encounter individuals with eating disorders. Making the diagnosis and taking timely, appropriate next steps is crucial and can be life-saving.

To strengthen my argument about the need for better management of eating disorder patients by all physicians, regardless of specialty, I will provide you with the following vignette, which literally took place only yesterday.

I received a call from an experienced internist who was concerned about a patient she had recently seen. It was an 18-year-old woman who had experienced unexplained weight loss over the preceding two years. Her medical status was so severe that she had a BMI of 13 and was in renal failure. After a comprehensive assessment, the internist felt confident that the individual had a diagnosis of anorexia nervosa. When she attempted to share her views with the patient and her mother, both rejected the diagnosis and became angry at the mere suggestion of it.

Worried and conflicted about what to do next, the internist placed a call to the two other specialists who had seen the patient and to the GP who made the referral. None of these individuals had considered the diagnosis of anorexia. Instead, multiple expensive and invasive tests had been done to find the elusive cause of her weight loss.

She spoke to one of her colleagues whose response was not to be too hasty in making the diagnosis of anorexia. Instead, the plan was to pursue rare and highly unlikely malabsorption syndromes, what we call “zebras" in the medical world. The physician's response to the possibility that the condition was anorexia nervosa was revealing. He said, "Let's give her a chance. It still might be something else".

The internist was calling me because she had no idea how to proceed. She knew what the diagnosis was, but no one—not the patient, not the parent, not the other physicians involved—wanted to call it what it was, not the rare zebra, but the unfortunately common horse, anorexia nervosa, with a prevalence in young woman of between 5% and 10%. This exemplifies how physicians may deny or fail to see eating disorder diagnoses and thereby significantly impact a young person's chances of recovery. In this case, this young person had been ill for two years, had dropped out of school and sports, which she had previously excelled at, and was walking around the city of Calgary at a dangerously low BMI and at risk of further decline and sudden death.

I hope the committee can appreciate with this story the challenges that physicians face and the complexity of providing doctors with necessary support and information at critical junctures during their training.

I will leave this topic with a sobering fact: exposure to eating disorder treatment programs is optional even in psychiatric residency training programs.

With regard to treatment, I have been the medical director of the Calgary eating disorder program for two years. In this capacity, I have had a twofold focus. First, our program needs to provide evidence-based treatment to those who suffer from eating disorders. Second, we need to provide service in such a way as to meet the needs of southern Albertans. In short, we are not providing adequate services if patients must navigate a long wait list to access our care, because every day that goes by before a patient is comprehensively and effectively treated is another day in which their disorder can grow stronger and another day in which patients become more removed from who they were before the eating disorder entered their lives. It is a time when suffering expands.

Timely, appropriate access to good-quality care is imperative in the treatment of eating disorders, and in most parts of the country we are failing.

In my view, there are some ways we can make the situation better.

First, there should be mandatory comprehensive education of all medical students and resident physicians on the subject of eating disorders.

Next, there should be a mandatory requirement that publicly funded programs practise evidence-based treatment, not just whatever the flavour of the month is, not just what individual clinicians would like to do. Funding for infrastructure and training must be driven with the goal of delivering evidence-based care, and the resources must match the scale of the problem and what is required to deliver that care. Better mechanisms must be put in place to support physicians treating individuals in the community and for those working in remote and rural areas.

Finally, mechanisms through which programs can interact, share data, and collaborate on research to accelerate understanding must be established and supported.

With that, I'll say thank you so very much for this opportunity to contribute to this important work.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much, Dr. Jericho.

I will now give the floor to Dr. Rice and Ms. LaMarre for 10 minutes.

[Dr. Carla Rice, Canada Research Chair in Care, Gender and Relationships, Department of Family Relations & Applied Nutrition, University of Guelph]

Thank you very much for inviting us to speak here today.

My name is Dr. Carla Rice. I'm a Canada research chair at the University of Guelph where I research problems of embodiment, including eating disorders and obesity.

[Andrea LaMarre, MSc Candidate, Department of Family Relations & Applied Nutrition, University of Guelph]

My name is Andrea LaMarre, and I'm completing my graduate studies with Dr. Rice at the University of Guelph. My research deals with individuals in recovery from eating disorders.

[Dr. Carla Rice]

In my 20 plus years of experience working in this area—formerly as the manager of the National Eating Disorder Information Centre in the late eighties and early nineties; later as a clinician at Women’s College Hospital, where I worked with women who were struggling with a full range of food, weight, and body-image issues; and now as a researcher—I have been in contact with hundreds of individuals, family members, and health providers dealing with these problems.

While I've witnessed many changes in the delivery of services over this period—more changes in service delivery than in treatment modalities—one thing has remained constant and that is the “revolving door” scenario in which many individuals cycle in and out of treatment without finding solutions. Many families and friends still feel helpless in the face of these complex concerns. Caregiver burden is high even though caregivers are resilient and desire the best for their loved ones.

As the existence of this study shows, there's a growing interest in developing federal policy in support of eating disorder prevention and treatment in Canada and we fully support this development. We are here today to advocate for a strategy that acknowledges, honours, and welcomes in individuals’ complex lived experiences of eating disorders. We want a case for centring those experiences in any strategy.

[Andrea LaMarre]

Obtaining specific information about programs, including the number of beds available, reliable estimates on wait times, and specific types of therapy offered, remains extremely difficult, despite strong efforts to devise online service directories for eating disorder care. Individuals and families may also struggle to obtain information about services that are available across Canada.

This difficulty can be exacerbated while seeking services in a province other than one’s home province, for example while attending university. Patients and families may be left trying to navigate a difficult system of referrals and waiting. There is certainly a dearth of available and affordable services for those whose health may be at serious risk, if appropriate and timely treatment is not provided.

[Dr. Carla Rice]

I do not think it is about changing the entire system or about reinventing the wheel. Rather than overhauling a system that may be helping many individuals and that is evidence-based, we recommend the development of an alternate system of community-based treatment and support. This system would focus on prevention and on counseling people before they develop chronic conditions. As well, alternative approaches to care may be more appropriate for individuals for whom mainstream approaches have not worked.

While we have accurate statistics about individuals who obtain a diagnosis, our research shows that there are many others who remain undiagnosed. These unnamed and unheard others may face stigma or be dismissed by community, family, medical providers, and others on the basis of their body size or on the basis of their race or ethnicity or their gender, among other factors. To better match services to complex needs, we envision a system with multiple points of entry and multiple approaches to care and support tailored to the needs of these different groups.

A number of barriers may prevent individuals from seeking needed care, not the least of which is how we talk about eating disorders. Though we are starting to see some shifts, a number of stereotypes persist in the popular imagination. Among these, we may still expect eating disorders to be a problem of young, white, middle- to upper-class heterosexual women with hyper-emaciated bodies.

Those who don't fit this stereotype may feel that their disorder is not legitimate in the face of this single story or single representation. This perception may be magnified if people confront negative experiences with health professionals, family members, and others.

Let me give you an example. Individuals from minority groups in particular may face a system that disbelieves in their disordered eating, while also feeling that to seek treatment is to broach and also to breach their ethnic or racial identity.

For example, in researching body image and eating concerns among diverse groups of Canadian women, I spoke with a number of racialized women—Asian women, South Asian, as well as African Caribbean Canadian women—whose eating disorders were misdiagnosed or dismissed by health care providers, an experience that complicated their recovery and that they attributed to race. In other words, they attributed it to health providers' not being able to imagine, because of this dominant mythology, someone of their racial group struggling with an eating disorder. Andrea has heard similar stories from her research participants.

[Andrea LaMarre]

In my research, I've spoken to young women who have faced strong familial and cultural norms around problems in the family. These things were not to be spoken about outside of the family for fear of bringing shame and embarrassment upon the family unit. For individuals faced with such cultural and familial discourses, asking for help can be extraordinarily difficult. There is still a great deal of stigma that surrounds help-seeking among individuals with eating disorders from both minority and non-minority groups.

[Dr. Carla Rice]

For those whose bodies do not fit neatly into the stereotypes, help-seeking can be met with confusion and assumptions. Taking the example of the women involved in our studies, significant struggles went unrecognized as providers read their bodies as “normal”. This suggests that behaviours considered extreme—for example, multiple workouts a day or extreme restricted eating—may only be read or seen as disordered once one’s body crosses the line into extreme emaciated thinness. Those whose bodies were classified as overweight or obese too were sometimes advised to restrict their diets and to increase their exercise, even though these recommendations triggered or exacerbated their disordered eating.

These practices are prescribed in doctors' offices and prescribed in gyms across the country as we fight against an apparent obesity epidemic. Yet fat-shaming tactics offer few solutions and may even perpetuate behaviours detrimental to women's health.

In my own research, for example, every single woman I interviewed who experienced themselves as fat in childhood developed an eating disorder in childhood or in adolescence that was due to people's attempts to regulate their weight.