Status of Women Committee on Nov. 28th, 2013

[Niki Ashton, NDP, Churchill, MB]

Thank you.

I'm wondering how much time I have left.

[The Vice-Chair (Mrs. Tilly O'Neill Gordon), Conservative, Tilly O'Neill-Gordon]

A minute and twenty eight seconds.

[Niki Ashton, NDP, Churchill, MB]

I have a quick question.

I came across an article by Karen E. Faith entitled, “Addressing Issues of Autonomy and Beneficence in the Treatment of Eating Disorders”. She talks about the tension between intervening against the will of patients and their ability to choose in terms of treatment. Obviously, this is an area which for women in general, whether we're talking about history of psychiatric treatments or forced sterilizations, has some pretty negative connotations. I'm wondering how you manage that tension and how you and your colleagues treat your patients.

[The Vice-Chair (Mrs. Tilly O'Neill Gordon), Conservative, Tilly O'Neill-Gordon]

You have 50 seconds.

[Dr. Blake Woodside]

My treatment program is voluntary, and that goes for people who have a body mass index of 10. Nobody is forced to come to my treatment program. Nobody is forced to stay; people can exit any time.

The program has in it elements that we think are evidence-based and supported by the scientific literature, so we believe we're practising in an evidence-based way. We also innovate in our treatment. We're one of the world leaders in developing better and newer treatments for anorexia nervosa, but it's voluntary. For most of what you would call the treatment programs in Canada, the treatment is voluntary.

Then on the other hand, there are people who are going to die right now, who are unwilling to come to treatment, and a decision is then made about whether to salvage them or not.

I'll give you two examples. We have a woman who is 23, who happens to be a medical student, who was going to die right away. She was on death's door in the emergency department, had been offered treatment repeatedly for months, would not consent to come to treatment, and a decision was made to partially weight restore her against her will to save her life for the moment. Another patient, 53, with 35 years' duration of illness, was in another local hospital in Toronto. I believe the decision there was made to let nature take its course.

The only circumstances under which people are treated against their will at this point for adults are where the person is going to die right away unless a medical intervention is made and a decision is made that the patient is too young and has not been sick long enough to simply let them die, but otherwise, the treatment is voluntary. It doesn't mean the patients like all of it. There are lots of anorexic patients in Toronto who will tell you that I am the devil on earth because of how my treatment program is structured, but it is voluntary.

There are limited choices for patients, very limited choices.

I think you're out of time and I've got to stop, but there are very limited choices and that's the big problem.

[The Vice-Chair (Mrs. Tilly O'Neill Gordon), Conservative, Tilly O'Neill-Gordon]

Thank you.

Next is Terence Young.

[Terence Young, Conservative, Oakville, ON]

Thank you.

Thank you very much for your time today, Dr. Woodside.

I wanted to ask you about family physicians, because I've had family physicians tell me that they often don't know what to do with the patients when they come into their offices. Because of the complexity of the disease and the comorbidities, the patients are difficult to diagnose. Once they are diagnosed, or once the physicians think they have them diagnosed, they just don't know how to treat them.

How big a problem is that?

[Dr. Blake Woodside]

The illnesses are relatively straightforward to diagnose, especially anorexia nervosa. There aren't that many reasons for an 18-year-old to be at a body mass index of 14. That one's pretty obvious. Bulimia is more difficult because it's an invisible condition.

Part of the problem is the total lack of exposure to these conditions in medical school curricula and residency training programs. In Toronto we have the largest residency training program, I think, in North America. We have 128 residents in the program. We have the largest program for eating disorders in the country. The total exposure to eating disorders that psychiatric residents—those are people who have graduated from medical school and are going to be psychiatrists—get in five years of training is two one-and-a-half hour lectures, and that's it. The situation for family practice residencies is even worse.

There's virtually no attention paid to this in medical school, so physicians graduate from medical school with no information available to them, no training, and no ability to do anything useful with these patients once they're identified. There's some room here for recommendations about curriculum in medical school, family practice residency programs, and frankly, psychiatry residency programs as well, because those institutions do an atrociously bad job of preparing their trainees to deal with this. Bulimia nervosa, in the core business group which is women ages 15 to 40, is nearly 3% of women ages 15 to 40. The percentage of bulimia in unhappy young women is very, very high.

I have a colleague who's an outpatient psychiatrist. Many, many years ago when we graduated, he went into private practice. As a favour to me, he added a couple of questions to his psychiatric review systems: have you ever been underweight; have you ever had binge eating; and, have you ever had vomiting? In his first 100 consultations, three people were referred for a clear eating disorder. He discovered 30 additional cases, mostly bulimia.

These are extremely common illnesses in family doctors' offices and in psychiatrists' offices, because these people are unhappy, so they're seeing their doctor or they're seeing a psychiatrist, and there is almost no training in these illnesses in medical school or residency.

[Terence Young, Conservative, Oakville, ON]

Thank you. That's very helpful.

When I first became knowledgeable about these issues, that is, when I first began to learn about them, as I wouldn't say I'm knowledgeable, I discovered that for patients who require service quickly because their body mass is so low, it is often recommended that they go to clinics in the United States, and OHIP won't cover them. Then I found that if an MPP letter went out, OHIP would approve to cover them.

The girls were not getting good service. In fact, because of the delay in getting beds.... If your beds were full at TGH and Homewood was full, they'd be waiting, as you said, for up to six months. That could take them from being in a risky position to quite a dangerous position.

Do you have any familiarity with the rejection of services by OHIP to pay for out-of-country service when there's a great need?

[Dr. Blake Woodside]

Sure. I'm involved in reviewing almost all the cases in Ontario. There's a panel of us who have a look at the cases.

The most common situation for people applying for out-of-country treatment is that they have never been assessed by an expert in anorexia or bulimia and have never even been offered treatment in Ontario. That's the most common situation.

I refer very few people to the States. I'll refer one or two people a year, people with extraordinarily complex situations, and there are one or two places in the States that have special expertise that can help out. But by and large, referral to the States is not necessary, and the outcomes are awful, partly because patients are not held there long enough. They need to be held there eight or nine months, and they're held there two or three months. Patients come back partially treated; they don't want any more treatment, and they get sick again right away.

Because the access is very quick, if it's granted, you get this subset of people who kind of get hooked on the quick access to ineffective treatment and stay ghettoized into repeated efforts of going into the States. They have a belief that the treatment system in Ontario is bad, and they won't come for treatment when OHIP finally cuts them off. This is actually doing people a disservice, by and large. There are very, very few good outcomes from treatment in the States, because OHIP won't send them there for long enough, and OHIP is confused about what the purpose of this program is. Most people in the treatment programs in the States would stay there 12 to 18 months at varying levels of care. Two to three months is just getting started.

[Terence Young, Conservative, Oakville, ON]

Okay, thank you.

Can you please comment, Dr. Woodside, on the nature of secrecy in families for the girls who suffer from these...or think they might have a problem or are trying to hide a problem? How does it remain hidden in the family? Even sometimes when the parents become aware, due to privacy reasons, the disease remains hidden. How does that prevent diagnosis and treatment?

[Dr. Blake Woodside]

There is widespread fear among the general public that if a member of the family is diagnosed with a mental illness they will encounter overt discriminatory attitudes or stigmatizing attitudes. I prefer the word “discrimination” to “stigma” because I think this is discrimination, and you can do something about discrimination. Stigma is much harder to deal with, but discriminatory attitudes can be changed by policy, for example.

People are afraid to come forward because they don't want to be identified as having a mentally ill family member. That's true for eating disorders, depression, schizophrenia, bipolar disease, anything. I used to be president of the Canadian Psychiatric Association and then chairman of the board for many years. I've testified at many of these panels before. I'm very close to pressing my mental health advocacy button, but I'll resist the temptation to press it.

For the individual, these are shameful illnesses, by and large. Again, this is more of a problem with bulimia than anorexia. Most families will notice if somebody's anorexic because of the weight loss and the amenorrhea, but bulimia is quiet and patients with bulimia are ashamed. They don't like it. They're not proud of it. It's not socially acceptable to be bingeing and vomiting, so they don't say anything until maybe they have a bit of a bleed when they vomit and they get terrified and say something, or maybe their dentists say something.

I give lectures to dental students about this, because they're often the front-line practitioners who identify this. But bulimia is invisible. It can go on forever until someone just drops dead from an electrolyte disturbance.

[The Vice-Chair (Mrs. Tilly O'Neill Gordon), Conservative, Tilly O'Neill-Gordon]

Thank you.

We'll move right along to Ms. Jones.

[Yvonne Jones, Liberal, Labrador, NL]

Dr. Woodside, I'm from Newfoundland and Labrador. I wanted to outline that, because you'll know that eating disorders became a very public issue in our province. Families came forward looking for help for their children who were suffering from eating disorders, and unfortunately, in some of those cases, they were too late and the children died.

As a result of this, we've seen some movement on eating disorders and a lot of it has been through tremendous advocacy work in the community, committees being established, work being done on trying to find treatments and reducing wait lists. I guess because of these people, the issue became more known to the public.

What work is being done today in the country to make people aware of the seriousness of eating disorders? What work is being done in our schools, in our colleges and universities, to help young men and women self-diagnose that they may have a problem like this and seek help? I'm wondering what your knowledge is of those kinds of preventive measures.

[Dr. Blake Woodside]

A very exciting event occurred a month or so ago in Toronto when representatives from advocacy groups from across the country got together with the intention of forming and launching a national advocacy group for eating disorders. It may well be that you will invite some of those principals to come and testify before the committee a bit later on as well.

That, in my 30 years, is the first time that's happened in Canada. Local groups tend to bloom and then wither and die, depending on the energy and efforts of the people involved. Creating a national advocacy body is very important, because then you have lots of self-support among the people who are doing the work. There is endless opportunity for that to occur and for that to be supported even at a federal level perhaps.

These are mostly parents of very ill or deceased people. They're passionate about this and they deserve everybody's support. That's really important, because at the end of the day, a family member who's willing to get up and say, “This is my story. My daughter died from this” or “My daughter has been sick for 30 years from this”, is much more powerful than anything I can possibly say, although I'll still get up and keep saying it. However, it's much more powerful for people who are directly affected to speak. Those people need to be supported. I hope this initiative is successful and I will support it as much as I possibly can.

It varies from province to province. You in Newfoundland are very active and I've met some of the principals from Newfoundland. There's a very active foundation in British Columbia, the Looking Glass Foundation, which has raised several million dollars and actually started a treatment centre on one of the Gulf Islands. In Ontario we have the outreach program that does public awareness and teaching in the schools.

I'm not as familiar with what's available in the other provinces, but I think when you do some digging, what you'll find is that there isn't all that much, to be honest, and there's lots and lots of room for that activity to be encouraged and expanded.

[Yvonne Jones, Liberal, Labrador, NL]

Your response leads me into my next question. In your opinion, what other treatments are offered in the country that are working that we need to be duplicating more?

[Dr. Blake Woodside]

There are good international standards for treating anorexia and bulimia, and those treatments have reasonable success rates. As I quoted earlier, it's 60% to 65% for anorexia and 75% to 85% for bulimia. These are evidence-based treatments, as much as we can tell. They're described well in the literature, and there are both American and British guidelines to support their use. They simply aren't available in most parts of the country, or at least they're not covered.

The gold standard outpatient treatment for bulimia nervosa is cognitive behavioural therapy. It's virtually impossible to find a physician to deliver that because physicians are not trained to do it. It's provided by psychologists, who are not covered by provincial health care plans. It costs $180 to $200 an hour. A course of treatment costs about $5,000. People won't pay that.

People with more than trivial illness with anorexia need to be in hospital. They need to be in a day hospital program. It's not that we don't know what to do; those services simply aren't available. Again, we know what to do about prostate cancer, but there were only three clinics in Ontario for all the guys with prostate cancer. We knew what the treatment was, but there were no services.

We need to develop new treatments. We're at the forefront of developing new treatments in neurostimulation here in Toronto, and there is urgent need to work on those new treatments. But for your garden variety anorexia or bulimia, we know what to do; it just isn't available.

[Yvonne Jones, Liberal, Labrador, NL]

In your opening comments you ended by making a couple of recommendations. One of them was asking the Government of Canada to get involved with setting national standards around eating disorders. If you were to outline to us today what two or three of those particular standards need to be, standards that we could negotiate with provinces in the country to meet, whether they be standards or benchmarks around treatments for eating disorders or whatever the case may be, what are the key things you would want to see included?

[Dr. Blake Woodside]

I'll just pick two or three out of the air as examples. One would be to recognize that appropriate treatment for anorexia nervosa of even moderate severity involves an intensive treatment program that starts with hospitalization and needs to be delivered by experts who are trained in the field. In the same way that you can't expect a general surgeon to do a heart transplant or a kidney transplant—those are specialized areas of practice—you cannot expect a general hospital or a general psychiatrist to deliver these treatments. The first would be that that's the appropriate treatment for anorexia nervosa.

Another would be to recommend that there be covered availability of cognitive behavioural therapy for bulimia nervosa, which is the gold standard, evidence-based treatment, and that it be readily available in communities all across the country.

Those are two just off the top of my head.

[The Vice-Chair (Mrs. Tilly O'Neill Gordon), Conservative, Tilly O'Neill-Gordon]

You have 20 seconds left.

[Yvonne Jones, Liberal, Labrador, NL]

That's fine.

Thank you very much for your time today.

[The Vice-Chair (Mrs. Tilly O'Neill Gordon), Conservative, Tilly O'Neill-Gordon]

Moving right along, we will have a second round beginning with Ms. Ambler, for five minutes.

[Stella Ambler, Conservative, Mississauga South, ON]

Thank you, Madam Chair.

Thank you, Dr. Woodside, for bringing us your expertise today and for your time. We really do appreciate it very much.

I was wondering about those lifelong skills you mentioned that you teach or provide in your program. What skills does someone who is recovering need in order to leave your program and begin to deal with this on their own? How do you teach them what to do when they leave the clinic? What are the skills you're trying to teach them?

[Dr. Blake Woodside]

There are eating disorder-specific skills, and then there are other skills that will differ depending on a person's precise situation.

Just to be clear, somebody who comes in with a BMI of 14 would be attached to our in-patient service for about five or five and a half months, and would then transfer to our day hospital service for two months. Then we'd meet with them individually for four to six months to do follow-up treatment to prevent relapse. Someone like that will have contact with our clinic for nearly a year, during which time they will repeatedly practise, with less and less supervision and containment, skills related to eating normally in a healthy, balanced way, and eventually, if they have anorexia, eating enough to maintain their weight.

Those are the core eating disorder skills that we have to teach people. It takes people about a year's practice to really get those nailed down and generate a robust behavioural recovery.

There is cognitive and psychological recovery as well which takes longer. We have to teach people skills to look at their thinking, cognitive therapy skills to identify streams of thought that are related to the eating disorder, and teach them how to deal with those types of thinking.

Then there is what's eating the person, and that varies wildly from person to person. Some people, as I said, have PTSD. They have to be taught mindfulness skills, affect tolerance skills, and do that work. Some people have other psychiatric comorbidity that has to be treated. That third part is a wide array, a vast array of different things that people might have to learn.

[Stella Ambler, Conservative, Mississauga South, ON]

For the cognitive recovery skills, that's not treatment that needs to be administered by someone like you, an expert in the treatment of eating disorders. It could be another mental health professional with that expertise. You're saying there needs to be a team of doctors and health professionals.