Critical moments

Yesterday was a very talkative day. I met with F.E.A.S.T.'s web developer first thing in the morning and then got home to buckle down to a Powerpoint I'm writing (does one write, design, arrange, draw up, or throw together a PP?). It was to be a solitary, silent day.

I ended up on the phone most of the day instead. Two seemingly opposite critical moments of care:

A mother at the beginning of supporting a child with an ED, and a mother who fears she could be at the end.

Both mothers were feeling desperate, frustrated, and confused. Both were also bravely focused on positive action.

Neither were getting clear and consistent guidance from clinicians. Both were being given a wide range of mutually exclusive instructions but almost none that included them. The first mom was realizing that no one was going to figure this out for her, the second was in a fierce fight to be allowed to make decisions.

One was sitting at home trying to make phone calls under the pressure of time and her daughter's deteriorating and angry mental state to find a place to get treatment. One was in a hospital lobby racing her cell phone battery to find help keeping her daughter in the hospital.

Here's the factor that made the two mothers most similar and kept me feeling that it was almost the same situation: ED was in charge. For all the usual reasons - untrained hospital staff, over-confident generalist therapist/staff psychiatrist, the counter-intuitive nature of the illness, distrust of parents, legal issues, lack of consistent ED protocols, a confusion of ED with other mental illness, disbelief in anosognosia, slavish devotion to teen independence, a religious devotion to BMI, and ignorance of eating disorder pathology - both of these mothers are being held back from helping their daughters because ED is being allowed to run the show. In the first case, the teen patient's ED is in charge because the family is getting bad advice and has no way of knowing who to trust. In the second case the mother is forced to be Cassandra: doomed to know the truth but not to be believed.

I am more and more convinced that the push-me-pull-you debate over whether parents should be involved with treatment and charged with feeding and all related issues is really part of a larger question: if not the parents, who?

Who should be in charge?

Because the consistent theme in the reality of most eating disorder patients is that the Eating Disorder is left in charge and it doesn't work. It doesn't work with patients who have just been diagnosed and it doesn't work in older patients. We've lost generations of patients to lifelong damage, disability, and death because we allow ED to be in charge of treatment. ED is very clear on his goals and they're not good. If we are not going to put parents in charge - the people most likely to be able to do so - then tell me: who will be? 

Comments

  1. I know we've had discussions around this matter before Laura, and I think it's highly complex.

    You ask who should be in charge...

    I agree that the patients themselves cannot logically be put in charge, because they are ill. They hang on desperately to their ED, not necessarily because they are convinced it's the right way to go and are anosognosic (whatever they might claim...), but because they are scared (actually terrified) of life outside of their ED. ED feels 'safer'.

    However, you almost mention the following barriers:

    Legal issues, lack of consistent ED protocols, a confusion of ED with other mental illness.

    Legal issues are very important, and the laws of medical ethics dictate that whenever possible, a person's autonomy (and, importantly, confidentiality) should be respected. In children parents/legal guardians have more right to a say. In adults the situation is difficult; the patient needs to be deemed incompetent for others to override their wishes. I think it is true that when stuck in ED that the person does lack competence in their ability for self care. Even so, the situation of sectioning can be very tricky, even messy, legally.

    In terms of lack of consistent ED protocols and a confusion of EDs with other mental illnesses: I disagree with the notion that an ED is an individual illness that requires a specific treatment protocol. Of course, re-feeding is essential in AN and a normalisation of eating behaviours with cessation of purging is essential in BN. However, there is a REASON why people use ED behaviours to regulate emotions, and that reason may differ between individual patients and needs to be tackled. The symptoms of EDs cannot be wholly explained by starvation, low weight and/or eating disturbances, whatever some researchers will have us believe. EDs are almost always co-morbid with other psychiatric and/or neurological disorders, and that's why well trained professionals are needed.

    Who should be put in charge? My answer is a Professional, but ONLY if they are a highly skilled specialist - which is not always the case. If in doubt, change Professionals.

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  2. Sorry, I had a 'brainfart'...

    *I meant to write: "you ALSO (not almost) mention the following barriers:..."

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  3. Sorry, I'm being rather vociferous here...

    I would in no way dispute the essential role of parents and family in the ED patient's recovery process, and I do feel that parents have a vital role to play in the re-feeding process in AN... However, just as it is unfair to place ED patients in charge of their health, it is also unfair to put parents in charge.

    I believe that a skilled Professional should oversee the treatment regime, but with parents playing a co-operative and therapeutic role.

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  4. Perhaps the phrase "in charge" is the problem here. What if I changed the phrase to "accountable?"

    Because putting professionals "in charge" is, functionally, leaving the patient's ED in charge - as the professional has no control of compliance.

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  5. Can I join this happy party?

    Cathy, I understand what you are saying and you are right in that there is no magic solution to this terrible illness. As we debate endlessly on the forum, different things work for different people and ed comes in various guises with many co-morbid conditions - sometimes knowing which condition came first is so difficult to work out.

    However, in my opinon, a person has a much better chance of recovering from or finding the right treatment for a mental illness IF they are physically fit. That is why I put refeeding at the top of the list. That is not to say we don't try and work on motivation, stress-relieving and coping tactics and cognitive behaviour. But we need G to be physically in a place where she can fight.

    However, finding a professional who is actually "in charge" or "accountable" is a pretty tall order for people like me. As a parent who is "in charge" and "accountable", I am viewed with deep suspicion by those with whom I have come in contact and I can see in their eyes that they blame me for being overbearing and overprotective of G, so her anorexia is her "rebellion"! (Grrr)

    When I last left a professional in charge, it led to a calamitous relapse and a dramatic weight loss. He ignored me and listened to G's an telling him that she was fine and that I was controlling. It took 4 months of relentless 24/7care by the whole family to recover from that.

    And 24/7 care is what G needs. Not an hour a week with someone who spends the first five minutes reading through the notes. She needs someone to watch over her all the time, listen to her woes, rub her back, laugh at her jokes, admire her schoolwork, like what she wears and, if we dont do it, ed will and life wouldn't be as much fun for her.

    I think the key word here is co-operation between the professionals and the parents, allied against the eating disorder. Different stages of this illness require different inputs from different professionals but I think that those who care for a sufferer 24/7 are in a much better position to work out what is working and therefore they should be in charge and form alliances with those professionals who can help their children at every stage of their recovery.

    xx

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  6. Can I join this happy party?

    Cathy, I understand what you are saying and you are right in that there is no magic solution to this terrible illness. As we debate endlessly on the forum, different things work for different people and ed comes in various guises with many co-morbid conditions - sometimes knowing which condition came first is so difficult to work out.

    However, in my opinon, a person has a much better chance of recovering from or finding the right treatment for a mental illness IF they are physically fit. That is why I put refeeding at the top of the list. That is not to say we don't try and work on motivation, stress-relieving and coping tactics and cognitive behaviour. But we need G to be physically in a place where she can fight.

    However, finding a professional who is actually "in charge" or "accountable" is a pretty tall order for people like me. As a parent who is "in charge" and "accountable", I am viewed with deep suspicion by those with whom I have come in contact and I can see in their eyes that they blame me for being overbearing and overprotective of G, so her anorexia is her "rebellion"! (Grrr)

    When I last left a professional in charge, it led to a calamitous relapse and a dramatic weight loss. He ignored me and listened to G's an telling him that she was fine and that I was controlling. It took 4 months of relentless 24/7care by the whole family to recover from that.

    And 24/7 care is what G needs. Not an hour a week with someone who spends the first five minutes reading through the notes. She needs someone to watch over her all the time, listen to her woes, rub her back, laugh at her jokes, admire her schoolwork, like what she wears and, if we dont do it, ed will and life wouldn't be as much fun for her.

    I think the key word here is co-operation between the professionals and the parents, allied against the eating disorder. Different stages of this illness require different inputs from different professionals but I think that those who care for a sufferer 24/7 are in a much better position to work out what is working and therefore they should be in charge and form alliances with those professionals who can help their children at every stage of their recovery.

    xx

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  7. I am in recovery from an ED, and my even though I am in my 20s, my parents have played a vital role in my recovery. I think parental support at any age is a very necessary thing.
    What do you do though when the parents are "making the wrong call". I have a friend whose mother has complimented her weight loss and has argued with the dietitian about her goal weight being to high. She has even told her daughter that she would be fat if she ever got back to that weight. Her mom wants to be involved and call the shots, but she is definitely in the wrong in that situation. What do you do then? And how do I help support my friend who is struggling greatly because of this?

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  8. Hi Laura, yes, I think 'accountable' maybe fits better... I was referring to 'in charge' in the context of who oversees the whole treatment programme.

    Hi Charlotte, I appreciate what you're saying. I do agree that first and foremost weight gain and stabilisation of physical health are the most important treatments for AN. The psychiatrist who has really helped me to recover emphasised that to me very clearly, and most good professionals recognise that therapies are ineffective if the person's physiology is unstable and they cannot think beyond their ED. The problem I had was that for nearly 30 yrs everyone had talked about re-feeding and little help had been given (even promised) beyond helping me to gain weight. I do have co-morbid difficulties that persist beyond my AN and were present pre-AN, and I desperately needed help (or to be promised it) with how to manage those difficulties. Indeed, I was attempting to manage the co-morbid difficulties by using ED behaviours - something that few professionals had understood.

    The re-feeding process is difficult to achieve without 24/7 support - I very much agree. My mother gave up her job to help me with re-feeding during my teens, and she is a very loving person, but I was uncontrollable. My co-morbid difficulties as well as my AN prevented me from seeing anyone else's point of view whatsoever, or an alternative outcome. I threatened to kill myself and I meant it. The only reason why I started to recover in my 40s was because I really wanted to recover. AN had left me very physically sick and I hated it.

    I also agree that one hour a week with a professional is futile, and that EDs don't develop because parents are over-controlling. My AN was very much about control, but what I was controlling was anxiety. I wasn't trying to rebel against 'over-controlling' parents (which they weren't) and I never saw it that way.

    Hmmm, it is difficult and complex. I guess I would conclude by saying that I don't believe that a 'one-size-fits-all' approach to ED management works, but that currently, the only efficacious evidenced-based treatment for adolescents is the Maudsley method.

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  9. I have to agree with Cathy.

    I think just as the patients are sometimes biased in their assessment of their disorder because they ARE the patient, parents are similarly biased because they care about their child.

    This is a good thing but can lead to irrationality, frustration, fear and anxiety on the part of the parent. These emotions do not always lead to behaviour that is logical or in the best interest of the child.

    In the case of adolescent AN, I think the parents can facilitate recovery in the same way nurses on IP units sit with patients during mealtimes and enforce rules. However, overarching treatment decisions should be made by ED professionals.

    Do we put parents in charge of the amount of chemo their child gets if they have cancer? Do we allow parents to administer antibiotics to patients with infections? These parents support the ill patients but they DO NOT make the medical decisions. There is a reason that objective/unemotionally attached professionals administer medical care. Similarly, there is a reason why a surgeon would not operate on their child or a psychologist would not treat a family member (unless they are Freud! :P)

    It is true one hour/week is futile for children or adults who need 24/7 care. However, in agreeing (either parent or adult patient) to OP care there is the understanding that the patient only NEEDS that 1hr/week guidance and does not require a higher level of care. Ideally, for 24/7 care, IP or day patient hospitalization may be needed.

    I think what also needs to be understood is adolescent AN is not adult AN and what may work for one, may not work for the other. Just as the treatment protocol for pediatric cancer patients may be different than treating adults with the same cancer. Biology, development (social, physical, etc.), cognition, societal perception, relationship context is different. . .

    Just thoughts.

    A:)

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  10. A:) - I think your thoughts are really interesting, especially the issue around administering medical treatment to family members.

    You write: "There is a reason that objective/unemotionally attached professionals administer medical care...".

    The issue of 'unemotional attachment' has been really important to me and was something I was discussing with my mother only yesterday.

    There are things I have told my psychiatrist that I would never have told my mother. This is not because my mother would not understand or would not care. It's quite the opposite... I am TOO close to my mother and she is a very caring and selfless person who would have been terribly upset to hear how I felt about myself and my life.

    I struggle with other people's emotions as well as my own (and that's not unusual in AN, or ASD). I have always known that I can tell my psychiatrist very deep and dark negative thoughts about how I feel about myself without him responding in a very emotional manner (e.g. bursting into tears, shouting, or getting angry). So, for example, I would say things like "I want to be dead because I hate myself so much". He would demonstrate empathy, but would remain calm and would help me analyse my feelings and make sense of them. It has been very helpful that we have discussed highly emotional things in a non-emotional, but analytical and intellectual manner.

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  11. We MAY be getting somewhere here.

    I'll start a new post to explain.

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  12. I wouldn't begin to know the answer to this enormous problem - but my contribution to this is simply that all parents who fight for their children are amazing and you should never forget this. I never had anybody in my corner, despite coming from a close knit and supportive family - whether it was selective blindness or honest lack of realisation, I just do not know. I'm only now (nearly 20 years on) trying to seek out some help (having relapsed into AN), but having to do it on your own is beyond difficult/ embarrassing/ shameful.

    Keep fighting for your daughters no matter what the challenges.

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