Are you home?

I rarely discuss residential care for eating disorders. Part of my reticence comes from my lack of personal experience with it: my daughter's recovery happened at home with outpatient care.

There is another reason, though.

I am not convinced of the effectiveness of residential eating disorder care and in fact have a lot of concerns about negative effects. Residential care means: separation from family and support system, absence from society, enormous expense, limited duration, exposure to patients whose symptoms or histories may contribute to the trauma of treatment, learning new behaviors or subterfuges from fellow patients, exposure to ideas and belief systems about the illness that may not be aligned with family or local resources, and a dependence on institutional environments.

All the above would be justified if it worked, but I have yet to see evidence whatsoever that the results of residential care are better than outpatient care (outside of marketing materials). In fact, there are indications of the opposite. Yes, patients who end up in residential care are a more chronic and ill population by definition, but even still the evidence for outpatient care is pretty clear. Also cost-effective, but that should not be a consideration. Effective, early, outpatient care is, to my mind, the way to make residential care what it ideally should be: available, safe, and rare.

The aspect of residential treatment that concerns me most, truly, is the disconnect between clinic and home. While the tools and boundaries and values of the clinic may be ideal and ideally delivered: without a clear transition to home and the continuation of those boundaries patients often, in fact even in the industry it is considered normal, return to residential care. Residential care can not go on long enough to bring full remission but when the home environment is not offering the same care and similar accountability all the work of patient and team to that point is at risk. The default in these cases is to blame the home environment, but I see it as almost built into the system: we set patients up to fail at home.

I believe the primary job of treatment is providing an environment for recovery for the entire duration of care. I believe a plan that doesn't cover the entire arc of recovery is worse and crueler than not starting.

Parents make the decision to pursue residential care in the belief of a cure, not a respite. They believe their loved one will come home with "tools" that they will feel ownership of and be in charge of on re-entry to real life. Parents rarely choose to support residential care at a calm time or feeling they have a choice: it is an enormous decision and a great deal of hope is invested in the decision. There is a particular and far too common despair of families who see a loved one come home and slide: when they've been told to back off or not part of the continuing plan.

Should parents have these unreasonable expectations? No. But who is going to dampen those hopes? Who is in charge of lowering expectations? Who is going to tell the parents that they need more than phone family sessions and Family Week? Intake staff? The patient?

Here's what I wish for: a treatment ethic for eating disorders that considers the home a treatment environment. That all possible resources are put into making the home a safe and integral part of the recovery process from the day of diagnosis. That residential care, when needed, become an extension of home as well, where parents and siblings are welcome at all hours and trained as part of the recovery team. That parents no longer have a choice about sending a loved one away: they are a daily part of the treatment as a condition of residence. That nearly as many hours are spent training and coaching the family as are spent on the patient.

It is time to stop seeing treating patients at home as in charge of their recovery and treating in a residential environment as excluding the family. We need to move forward to integrating these concepts to offer a full circle of safety and urgency in all environments.

Comments

  1. Integrating the two ideas would be waaaay helpful. And, although I wouldn't easily admit this, it was what (is what?) I needed (need?).

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  2. Now is Now, any way I can help find someone to help get that going? I mean it.

    Colby, I can't see your profile. My first assumption was that this was a spam post. Are you a parent or do you work for Silver Hill? Would you like to explain how SH does what I've described in this post? Did you actually READ this post?

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  3. Laura,

    I sat here crying reading this. I'd love this read at a conference, mailed to treatment centers everywhere, printed in places ED professionals will read it. It is exactly what I needed. It is exactly what I didn't get.

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  4. Anne,

    What they really need to hear is what you've just said: "It is exactly what I needed. It is exactly what I didn't get."

    This has to change. You and I are part of that, for all the parents who are coming down the line!

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  5. Thank you for saying this so well,
    I think you are spot on.
    Parents are in a very tight spot when they look at the In Patient or Residential options for their children, they are desperate for help in healing their children. They are also pressured by clinicians who are trained to think of these options as preferable.
    I beleive that a well supported and empowered family is the best place for healing.
    M

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  6. what would you recommend for someone who doesn't have the support of their family? For someone who knows their ed started at home, but who can never go home to recover. For someone who cant open up to their parents, or even hardly their friends? Someone who is pretty much doing this alone but still wants to recover? How can i find a "mamma" to help me to support me to give me the care i have always needed but never gotten?

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  7. Hi Laura

    I very much agree with your description of the negative features associated with residential treatment centres, but I do feel that inpatient care can be beneficial.

    In the UK, people are only admitted to residential treatment centres when they are 'high risk' - either physically or psychologically. Very rapid weight loss, very low weight, excessive binge-purge or exercise behaviours and/or physical complications (such as a high risk of re-feeding syndrome) generally make inpatient treament essential. The patient may need to be monitored continuously for vital signs, blood electrolyte levels, cardiac function etc.

    I also agree with you about the advantages of treating a child at home via the Maudsley Method. However, this is sometimes not feasible, for reasons such as:

    1. Both parents work and cannot afford to quit their job to act as full-time carer.

    2. Parents may not possess the knowledge and skills to be able to follow an effective home-based treatment regime.

    3. The patient associates their ED behaviours with the home environment. By that I don't mean parental abuse/neglect. Rather, the patient is very ritualistic/rule-bound and needs a change of scene to establish new, less dangerous routines. This was the case in my ED. I come from a loving and supportive family, but I am very ritual bound and my AN was driven by my rituals.

    I no longer live with my family (they live close by) but I couldn't break my food and exercise rituals while living in my familiar environment. Initially I needed to be taken out of it break my rituals/rules and learn a different, safer way of living.

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  8. The best results will come from ideal situations but not all situations are ideal.

    Pulling a drowning swimmer out, drying them off, and then throwing them back in the deep water is not a way to teach swimming. No one is arguing that we should not pull them out, but we need to stop throwing them in again before we give them time to breathe and learn to swim and time to practice. Inpatient care, and even months of residential, are not enough time or enough practice or in the same water.

    Parents, who are essentially on the other side of the pool waving their arms, need to be brought over to the right side and trained in the same techniques as the professionals. If they can't learn, or don't swim themselves, they can't be left in charge halfway through the lessons.

    There will be a need for hospitalization (distinct from residential treatment) if the patient's illness is too severe at certain stages or the home is unequal to the task. That hospitalization, or even residential care, would still need to be incorporated into a continuum of care after release. If no such plan exists then repeated hospitalizations and residential care are set up to fail.

    If there is no family or no safe family to release to, other accountable parties must be identified.

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  9. Now, and Jaded, I can't reach your mothers or others in your life that may be able to play that role - but they can reach me if you let them. I hate that you don't have that support but also know that ED sometimes blinds us to resources that are right there. ED lies about the willingness and abilities of those around you.

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  10. Laura, Thank you so much for your kind offer and your support. Really. How nice of you! I don't live with my mom, but I know that if I were to tell my mom I need some "meal partners" right now, she would drop everything immediately and come visit me for as long as necessary. I'm at a stage in recovery where I feel ashamed that I'm having a hard time. For a good few/several months, I was doing really well with food. This good streak was actually jumpstarted by my therapist reaching out to my parents, including them in treatment, and communication opening between my parents and me. Now I'm having a hard time again, and I am finding it hard to tell my parents (and am having a hard time letting my therapist reach out to my parents) because I feel like my mom/dad will be so sad and disappointed. They thought "good. now she's better." and I'm afraid that my parents will lose hope in me if they know I could use some "forced support" right now. But.. as you said... my sources are right here. and the ED is lying to me about how my parents would react. I have to just get myself to say "yes" to my therapist when she says "I'd like to get your parents up here. can i?" I basically have all of the resources. I have friends who have told me they'll eat with me. I have family who would move in with me if I asked. I have a therapist who knows what she's doing. I just have to stop worrying about what people will think... I have to stop being embarassed about the fact that I STILL need support, and i need to just embrace the support system that surrounds me. I am getting worried about myself though, so I plan on going to therapy today and accepting the help.


    Laura, I thought of you the other day when someone who confronted me about my lack of eating. They said, "Was your mother really controlling?"

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  11. I very much agree Laura. Some (not all) patients do very well in treatment centres but relapse on release because they haven't continued support. This is especially true for adult patients who have been isolated in the AN for so long that they have no 'lifelines' out of the hospital/EDU environment - but it is also true for young people whose families, despite caring, may not know how to manage their child once they return home.

    We talk about ED prevention programmes for young people (which in my opinion erroneously focus on 'body image'/love your body campaigns), but what is really needed in our society is education for parents/families should their children develop an ED.

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  12. The way health care is financed in the U.S., there is, paradoxically, a financial incentive for residential centers to delay recovery. The reason is that since residential treatment is so expensive (often $500-$1,000 per day) the only way most sufferers and their families can afford it is if health insurance will cover the cost. Many insurance companies, however, will pay for treatment only as long as the patient meets diagnostic criteria for anorexia, which the insurers contend means less than 85% of normal weight. Consequently, once the patient's weight becomes 86% of expected weight, the insurance company says she is no longer ill, and financing is cut off, even though the patient is not yet recovered. Residential centers, which are mainly for-profit corporations that are in the business of maximizing income, know this will happen. So they have an incentive to keep the patient below 85% for as long as possible, in order to keep the insurance money flowing to them, even though the best scientific evidence favors urgent weight gain. (One of the largest residential treatment centers in the U.S. admitted to me that it intentionally slows the rate of weight gain for this reason.) Since the financial interests of the residential center are not necessarily aligned with the best interests of the patient, parents need to be careful and, if they choose residential treatment, they should, in my opinion, make sure, if possible, that the treatment their child is receiving while in residential care is monitored by an independent eating disorder specialist who is not affiliated with the residential center.

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  13. Laura-
    Right on! You nailed it once again in this blog.

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  14. Now is Now, please come back and tell me how it goes. It isn't your job to protect others from the truth of your situation. They don't want to be falsely relieved and they'll want to be of help. They probably know already just by intuition. It is your therapist's job - and she sounds like such winner - to give your parents realistic expectations. ED is coming between you and your family, not protecting them.

    For those who have commented "but what about when the family isn't/can't/won't I want to make it clear that I'm not talking about Maudsley here. I'm talking about a seamless continuum of care. Patients should be supported fully during care at all stages whether inpatient or at home. They should not be going home alone, or to families that are not equipped to provide safe harbor. How that is done, where that is done, these are topics for discussion and individualized care.

    Family are most likely to be the ones living with the patient after release. That is why I emphasize making the home as strong a place for wellness as residential. That is why family involvement during care is so important.

    If there is no family, or someone else is in a better place to provide support, then of course there need to be alternatives.

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  15. Hi Laura

    I'd be interested to know your response to the following:

    1. What do you suggest for patients who have previously and repeatedly been re-fed to an optimal state as outpatients within the family, but repeatedly relapse - and sometimes after a period of recovery that persists for a few years?

    2. What do you suggest should be done with anorexic individuals who are so terrified of eating and weight gain that they remain underweight, despite having knowledgeable and supportive parents?

    My rationale for posing the second question is that I was treated at home with my family through my teens. My family didn't leave it all up to me and the professionals. For the first two years after my diagnosis, my mother took complete charge of my nutrition. She gave up her job to do so and invested a lot of time and effort reading up on available info. I visited a dietician and paediatrician every week to be weighed and my mother accompanied me. The diet sheets were given to my mother and I came home from school for lunch. However, every time my BMI rose above approx. 16, my emotions (especially anxiety and depression) were so overwhelming that I was unable to cope with them. I self harmed and over-exercised in secret. The only further step my family could have taken would have been to tie me up and force feed me. I didn't respond effectively to nutrition alone. What would you have done if your daughter had threatened to kill herself (because she felt so pressured to 'eat to please') and had meant it?

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  16. Not Laura, but I'll answer. My daughter did threaten to kill herself. She did mean it. We continued with weight gain. She was protected 24/7 at home. Meds were locked away. Knives hidden. A parent was in the same room with her at all times, even while she slept at night. If we hadn't been been able to insure safety at home we would have considered psychiatric hospitaliziation. The protocol would have been pretty much the same there--monitoring and refeeding. Getting through this part way key to helping her recover fully.

    I think this is actually a very common scenario, not a rare occurence. Most meds show little promise for anorexia nervosa but atypical antipsychotics are sometimes helpful in getting over this bump.

    It seems to me that relapse risk is reduced when a patient is helped at home since there is continuity of care. Parents who have helped their child gain weight can recognize the beginnings of a new struggle and step in. (Hospital admission for a 5 lb weight loss isn't likely.)

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  17. Anonymous - well done, you've done a wonderful job, but Cathy is right, not all parents can do it (and I'm not saying that your mum isn't wonderful too Cathy, I couldn't do it either and I have met some wonderful parents who couldn't either). There just isn't the support out there to help parent and child through this incredibly difficult time and all too often the choice is between floundering at home which no support, or hospital miles away with no connection with home. I don't think Laura is calling for the closure of residential facilities (correct me if I'm wrong Laura) but rather for their opening up to true parental involvement, care for the whole family, day care, respite care, care when it's needed care - as we've said before, more like this kind of wonderful place,http://www.helenanddouglas.org.uk/ but without the dying.

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  18. Yes, anonymous, that's what I hope for. That patients can have a continuum of care and families have a spectrum of supports.

    This isn't about whether parents should be the caregivers but whether PATIENTS should be released to be their own caregivers long before they are able, and released to families who have to watch helplessly as a patient struggles.

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  19. I was simply responding to Cathy's direct question, "What would you have done if your daughter had threatened to kill herself (because she felt so pressured to 'eat to please') and had meant it?" I didn't suggest anything about what any other parent could/should do or anything about facilities (other than to say we'd have considered psychiatric hospitalization if we hadn't been able to manage.)

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  20. Hi, this is part of the reason that i cannot go to my mother, i also at this time cannot afford to get help because i do not have insurance or any money at all to put forth to that cause. In the mean time im 14.8 bmi.

    I want to recover. I cant go to my mom for support here is an example of why. This what my mom wrote me when I tried to talk to her about my eating disorder.

    Hi Deanna,

    Thanks for writing. Sorry that you're still having problems with eating right. It's very likely that the reason you're tired is because of not eating well. I still have a tendency to starve myself because I'm gaining so much weight. It's totally disgusting and not right, that I can eat practically nothing but weigh as much as I do, and it isn't pretty. It really bothers me a lot. But there isn't anything I can do about it. After all, I can fast for weeks, and still not lose a pound. It's so unfair. And I do find that because I don't eat as much as I should, I feel much more tired and much worse than when (or if) I do, and I'm sure that your eating patterns are at least part of the reason (if not the whole reason) why you feel tired etc.

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  21. Deanna,

    I am so deeply sad for you and your mother. People suffering from an eating disorder can't offer safety or consistent support to other people. It sounds as if your mom may have an eating disorder. She can't provide you with help, and you can't take responsibility for educating her because you are ill.

    BOTH of you need treatment.


    NOTHING is more important - money, work, appearances, past grievances, school - than getting you well. Everything else depends on that. Please, please put your trust in someone who CAN help you. Let me or someone else help you find someone who can help you take that first step.

    *I* believe there is a life out there for you free of ED. I believe there are people who will support you toward recovery.

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  22. Your right I do need help. Im going to have to wait until i have insurance though because there really isn't a way for me to get the type of help I need without it. I guess im just going to have to do my best in the meantime. I have tried contacting specialist recently however they all require more money then i can afford. Im pretty poor right now but maybe in the future that will change. Im just scared right now. But your right both my mom and I need help. My mom refuses to get help though, I on the other hand dont want to die. I really need to take better advantage of some of the online resources. I guess im just feeling defeated right now because i dont have enough support, and really dont have any support in my personal tangible life.

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  23. Jaded,

    In some areas there are free services or supports. You are worth it. If you let me know where you live (here or by email) I can make some inquiries.

    YOU ARE WORTH IT.

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  24. please email me. I cannot email you for some reason. My email address is jadedchalice@gmail. Id love to talk to you more.

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  25. If there isn't an outpatient program in my city, what do you reccomend?

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  26. That's an excellent question. As I've said, the "where" is less important than that treatment begin and a long-term plan in place. Residential and inpatient are part of that, but not in isolation or in opposition to what will go on at home. No matter how good the residential care it has to be coordinated with and followed through in the home environment to have the best chance of success.

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