F.E.A.S.T's Around The Dinner Table forum

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bigbroj
Hi members, I'm new to the forum and have been suggested i sign up to see if there are any glimmers of hope or advise members can provide for both suffers and the family of a long term suffer in New Zealand.

My sister has been suffering from Anorexia for the good part of 15 years since she began High School. Through out the years she's been admitted against her will under the Mental Health Act approximately 6 times throughout the early years of the illness. After 7 years of this the specialist basically informed us that they had exhausted all options and because my sister was not willing to accept treatment there as nothing else they could do for her. They have since gone down the track of monitoring her vital's by taking bloods and monitoring her neutrophil levels. They will not intervene unless shes hits 0.5 or below.

She resides at home and has breakfast, afternoon tea, dinner and fruit as dessert. For lunch she has a supplement Fortisip drink. Over the recent few years we've caught her throwing up and purging her food. We are vigilant about this and try and take measures to ensure she has the least opportunities to do so, though as many will know, suffers will always find a way to cheat or hide things. Her eating habits are now getting worse, we suspect she is throwing up more, she's leaving more food on the plate, she smears food between her finger tips, as she is not home for lunch we are certain she does not drink her supplement. She is also very weak now, for example when entering a car she needs to use her hands to help lift her legs into the foot well.

We recently met with her main Doctor at the hospital who reiterated that there was nothing more they could do for her. I would also use the phrase that they were scared of her also. Over the years she has been studying at university and has accumulated a fountain of legal knowledge regarding her rights and legal implications of health professionals who currently care for her and her family members. I've recently been threatened with 'Your not my guardian you have not right to tell me what to do'.

So the health system seems to be too scared to do more in fear of any legal proceedings she might do against them and we as a family have our hands tied as the hospital is not willing to do anything to help her and my sister is not acknowledging she has an illness which needs urgent help.

I have a few question for members, after providing you an overview of the situation, they are:

- Are there families out there in the situation as us and how do you cope with a family member with such a long term illness who doesn't accept they have one

- Are there any nuggets of help or support people have found useful for families in our situation

- Can a hospital do nothing, is there anything further they could do? Do we have any legal rights

- I have suggested my parents seek some form of counseling, however this would go down like a cup of cold soup if i suggested this. Are there good techniques to suggest this to them? 

Thanks so much for your time and i look forward to reading your responses.

From a hopeful brother
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mjkz
Big Broj, I'm across pond in the US but my daughter has been ill for around 18-19 years.  When my daughter was a minor, I had her admitted many times like your sister and then when she reached the age of 18, she was committed (sectioned) at least 4 times for not eating, not getting treatment, etc.  She is now under a conservatorship and I have control of her finances, etc.  She has a contract that she has signed stating that she will maintain a certain weight, will not purge while living with me, will see a therapist and physician and if her weight falls below a certain weight she is admitted until her weight is above the minimal level.

Early on all she wanted to do beside not eat is get away from me because I made her eat.  When she was 18 and refused to enter treatment, I ended up having to kick her out and made her a ward of the state.  It was the hardest thing I ever had to do and within about two months under the state's care, she was at her lowest weight and nearly died.  She was forced into treatment in Canada because her weight was so low no US hospital would accept her and she has no insurance.  It was only after she had to live in state care and get forced treatment that got her weight above a certain level that she was able to agree to the contract and abides by it now.

In your case, my first stop would be an attorney to investigate what rights you have. In the US anyway your sister would be considered a vulnerable adult by virtue of her mental illness and could have a guardian appointed or you or your parents made her guardian.  I'm not familiar with the New Zealand system so hopefully someone who is will come along and fill you in on that part.  I would be going after the medical system too over there.  It is not okay in any way to let someone kill herself by not eating and just because your sister is well informed does not mean she is right or that a judge would see it her way.  You should have access to the Treatment Abroad program so since there does not seem to be any treatment in New Zealand for adults, you could look at the UK.

One of the things you could do even without legal help is tell your sister that she needs to access treatment.  If she lives with you, you could make living with you hinge on accessing care and eating.  Tough love is hard but it was the only thing that broke through my daughter's denial.  I hesitate to put it that way because she still doesn't see her weight or not eating as a problem. She still thinks I'm the freak obsessed with her weight and eating, etc.  You get the picture.  She doesn't need to accept that she has a problem in order to get treatment.  Insight is not needed for her to be well.  Lots of people don't have insight into their not eating and yet recover.

Your sister is very lucky to have a family who cares and has not given up on her.  I really hope you can get some good legal help and then start getting her the treatment she needs.  I went to Al-Anon for quite awhile and it was very helpful for me in accepting that there is only so much I can do.  I may put everything I have into keeping my daughter alive and it still might not be enough. 

Something else people have tried with varying success is publicity.  Get a hold of newspapers, radio shows and TV shows and let them know that your sister is dying and the doctors rather than trying to help are giving her only hospice care.  It is totally unacceptable and it is amazing what the power of public opinion can do in helping doctors and hospital systems do what they should be doing in the first place.
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bigbroj
Thanks so much for your response and your insights. Some really good points and ideas suggested. 

In the past my sister has actually wanted to go live outside of home to get away from the constant scrutiny she suspects we were giving her illness. We did let her go and live in a University dorm, however it was apparent to her within 6 weeks she was not able to fend for herself so she returned home.

My sister has also been to the point of deaths door in 2008 and though it scared the crap out of us this hasn't served as a reminder or warning to her of how serious her condition is.

Yes i think we will explore the legalities of the treatment. They deem her to be legally competent however is it actually her or is it the illness which is pulling the puppet strings?

Its very hard to persuade her into anything these days so even going abroad for treatment would be stretch.

She is currently studying at university and i am amazed that the university isn't exercising their duty of care with her condition..

The media has been something which we are also considering, though you do see some cases where the media can be no so helpful and blow things up out of proportion so we'll tread on this one carefully!

 
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Torie
Good ideas, mjkz.  

I don't have much to add, but have you considered contacting the university and making sure they know how ill she is?  

It sounds like your sister if very ill.  Unfortunately, many so-called professionals are not up-to-date with the testing they should be doing and, for example, don't properly evaluate orthostatic blood pressure and pulse. In general, medical providers are not allowed to tell you information about your sister, but there is nothing that prevents them from listening to what you have to say about her.  

Like mjkz, I'm in the US, but we have a number of members in NZ and AU - hopefully some of them will be along soon with advice more specific to your part of the world.  Non-ED world, I mean.  We're all familiar with the down-the-rabbit-hole universe that brings us together of course.

It's great that you are trying to look out for your sister.  Heartbreaking, I'm sure, to be in that situation as a sib. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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bigbroj
Thanks for your advice, so i now have a further update to the situation. I spoke with my sister tonight and asked her what transpired in a meeting she had with my parents and her Doctor recently.

She reiterated that she did not want to accept treatment and that the Doctor advised there was nothing they could do as the situation was now deemed terminal. 

This is very hard to take as a family so i will be looking into some form of counseling. I guess it's hard for us to take that a mental illness can be considered terminal as opposed to the normal terminal illnesses ie cancer.

She told me that she can't change or she would, she doesnt know or have any reason to why she has Anorexia and there is nothing which will or can change her mind as she won't accept any help and would just like her wishes to be respected.

So she understands she has an illness but something tells me someone or something may have got her thinking so terminally, really really heart breaking to hear and take in at the moment...


 
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Torie
She reiterated ... that the Doctor advised there was nothing they could do as the situation was now deemed terminal.

Hmmm ... maybe the doctor actually said "chronic."  We're not doctors here, of course, but terminal seems like the wrong word to me.  It's very common for sufferers to mis-report conversations with providers.

One thing that was really hard for me to wrap my mind around is how thoroughly irrational they are about anything to do with food and anorexia, especially when they are rational about everything else.  But really, there is usually no point in trying to reason with them because, frankly, they are not rational on this topic so having a rational conversation with them about it is impossible. 

A counselor for yourself sounds like an excellent idea. Some find Al Anon helpful, too. xx

P.S. I notice that your post (above) came in just after mine so I wonder if you missed mine - that happens to me a lot when I happen to post soon after someone else does.  (Not that my post was particularly enlightening, anyway, really.)

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Sotired
Hi, I am in NZ, in Auckland.i have a few questions which you might or might not know the answers to.who is treating her?if she is under the regional eating disorder team they could still put her under the mental health act to treat her couldn't they?there is a live in facility-used to be called thrive but has a different name now, could your sister go there?
Have you had contact with the pyschs in the adult team?can you use the law to get them aware that just allowing someone to die from anorexia is against the law?in this situation surely you or your parents could assume guardianship and get treatment for your sister?
In terms of self care-I found a pyschotherapist who specialised in helping caregivers of anorexic people was definitely a good idea.i also went on antidepressants and took lorazepam on days where I had meetings and struggled to cope.the therapist was through REDS-someone on here told me they changed their name recently, but it's still the same service.
Depending on how old your sister is and how much damage she has unintentionally done to her body, this could be the reason for palliative care, rather than enforced care.
Even though my d had severe anorexia for only around three years,she has done what may be irreparable harm.she has had several life threatening episodes due to gastroparesis and potassium being too low.
I have lost a parent to a terminal illness and when we knew she wasn't going to make it, we concentrated on giving her the very best life we could for the remaining time she had.if that is where you are at, then what remaining dreams does your sister have that you could help fulfill?
The sad truth is that not every story has a happy ending, so sometimes it's about getting good care started via therapy and/or meds for you and making the most of the remaining time you have with your sister.
or, if the fight is still needed you could look into overseas care-there are some places in Aussie I think and certainly some in England and America.
I feel like I have given a very mixed bag of options but not knowing how old or what state your sister is in, I can only go by the anorexic adults I have heard about and seen.sometimes there isn't much you can do by the time they hit their thirties, the damage is just too great.
If I have upset you I apologise unreservedly, and I hope you understand that that was not my intention.
Sotired42
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NELLY_UK
If you are thinking of the uk, it will almost certainly have to be private care as our NHS system
Is collapsing , particularly the mental health area.
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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Sotired
Sorry, you are right nelly, I should have clarified that any help from overseas will have to be privately funded.
Sotired42
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bigbroj
Thanks for your thoughts on our situation.

She is under the care of a special eating disorders unit and is seen to by the clinical head - though i must note he is not a specialist, as the specialist left this DHB due to his frustration over the way the DHB were going to run what he had successfully set up and run. In order to enter the treatment units and for her to travel she has to be willing to accept help, this is the key thing and unfortunately she isn't or we'd be jumping on a plane right now.

Yes i am currently looking into the legal side of things regarding guardianship etc however my sister is over the age of the 18 so is legally an adult and can make decisions herself, hence why we also face the brick wall of patient confidentiality.

I also must note that in the early stages she was prescribed anti-depresentants however she has refused any synthetically made, mind altering drugs and only takes the supplements which the hospital prescribes her ie vitamins and minerals.

We've really gone through the whole thing on this one, we've tried everything which we can do which can be done, the other things can only be done if she is willing to accept help and treatment.   


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mjkz
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They deem her to be legally competent however is it actually her or is it the illness which is pulling the puppet strings?


Who is they?  If it is the doctors, you need to talk to legal so they can advise you on how to put her under the mental health act (even against her will) and get her declared legally incompetent.  The doctors it sounds like are not offering her care at all.  You are right to be upset for her to be told she is terminal when there is still hope.  She can't see it because she feels she cannot change but there is always hope. She needs you and the rest of the family to keep that hope alive.

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though it scared the crap out of us this hasn't served as a reminder or warning to her of how serious her condition is.


Of course not.  She feels she can't change, sees no hope or way out of the situation so terminal and dying doesn't seem that scary in a situation like hers.  There is hope for her though and she needs help in getting care to get her to a point where she can see a glimmer of light.  My daughter was deemed terminal many times yet she is alive, kicking and doing well right now.  She works and volunteers.  She has a future and wants it now.  This is from someone who has been sick for a very long time and got down to 64 pounds at 5'7" tall.  There is hope.
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The media has been something which we are also considering, though you do see some cases where the media can be no so helpful and blow things up out of proportion so we'll tread on this one carefully!


I'm sorry but how can it get worse? She is dying and the doctors are letting her.  There is no blowing this out of proportion.

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Yes i am currently looking into the legal side of things regarding guardianship etc however my sister is over the age of the 18 so is legally an adult and can make decisions herself.


Do you think she is able to make decisions for herself? Yes, she is over 18 but that doesn't mean she is healthy or able to make good decisions.

Here is an article from England that made the news a couple of years ago.  Take a read.  I think your sister falls in the same category.  Don't assume she is capable of making good decisions about her health and don't give up just because her doctors say she is terminal.  I would go the legal route before accepting what she is telling you.

https://www.theguardian.com/society/2012/jun/15/anorexic-woman-fed-judge
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Francie
BigBroj, Thinking of you and your family and your sister. She is lucky to have you as her brother. I hope things turn around for her and your family. Sending prayers your way.

Francie

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ninhursag
Bigbroj, I am the spouse of a long term sufferer. In 2007 she'd been sick for most of her life, was at a terrifying weight and in and out of the ER. She was totally disabled, could no longer work and did not care if she lived or died but expected to die.

Her older sister made her a therapy appointment, mostly out of desperation, and asked her to please go. She did. It has been a hard, hard, hard fight with lots of ups and downs and it continues year by year and day by day. But now her body is strong, she has a family and she mostly can resist the ED urges day to day.

On my last birthday she had a slice of flourless chocolate cake and said she'd never had it before because her ED had not permitted it. And she said it was delicious and went to the bakery to buy more.

SEED is not a death sentence nor a sentence to eternal misery. Remission, even full remission is still possible. My wife's older sister helped her start and your sister is very lucky to have you in her corner.
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Torie
ninhursag wrote:
Her older sister made her a therapy appointment


Many find that providers will not let someone else make an appointment for an adult.  I wonder if it would work to make an appointment for yourself, and then if you are able to convince your sister to go to that appointment, call them and explain the happy news that your sis will be attending the appointment instead of you.B

Just a thought.

By the way, so nice to hear from you, ninhursag!  So glad to hear how well your wife is doing!  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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bigbroj
Thanks for your thoughts on this and the article is useful, we may look into this.

So that members understand the NZ laws of our Mental Health Act please find a link to who this works and how they assess people to whether they are put under the act or not:

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mjkz
Bigbroj, the process is similar in most countries we see people posting here from.  The hold times can be different but the process is relatively similar. 

I took my daughter to a psychiatric ER for her first hold.  She was involuntarily admitted for a 72 hour hold and then decided to fight it.  She went to court in front of a judge who ruled against her and committed her (sectioned her) for 3 months with a reevaluation afterward.  She was in college at the time, straight 4.0 student, very active in groups but very low weight.  Even as logical and as put together as she appeared when she was put in front of food, she couldn't eat or drink enough to keep herself going.  People with eating disorders can look so logical and well put together on everything but food and eating.  That doesn't make them legally competent to make decisions around food and keeping themselves alive. 

I know it is hard and very often not very rewarding at first to tackle someone who is very eating disordered and has no hope of getting better.  It can hard too when your family is so used to that person being sick to get people to change to try to help her.  In the end though she will die if she keeps going the way she is and who knows when that might be.  I decided I would rather deal with my daughter's anger and hatred in the short-term to keep her alive.
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bigbroj
Hi Contributors,

Thanks for your thoughts and support through this, if only the New Zealand judicial system was a little more less stringent than the cases highlighted in the states and in the UK/EU where it seems a lot easier to legally force treatment.

Alais I have another set back which doesn't help our cause she has enacted an Advance Directive, the definition to this is as follows:

Patients have the right to use an Advance Directive, which is defined in the Code of Health and Disability Services Consumers' Rights as "a written or oral directive - a) By which a consumer makes a choice about a possible future health care procedure; and b) That is intended to be effective only when he or she is not competent"

The Health and Disability Commissioner (HDC) has produced an Advance Directive which allows people with mental illness to specify what treatment they agree to, and what treatment they do not consent to receive, if they become unwell in the future. For more information on Advance Directives, visit the HDC website.

So this is really really horrible that my sister has done this as our hands are tied and also the hospital's hands are tied as they are legally obligated to follow through with this as my sister has asked for no further treatment...

I have asked my mother to confirm whether the doctor used the word 'Terminal' she advised me that he said this:

'(My sister) is in the late stages of terminal Anorexia and no treatment can be offered'

'If they did force feed her this would harm her, her body is too compromised and there is a danger that refeeding syndrome'

'Even if they forced full time supervised care on her they have had patients who would just throw up on the supervisor' 

Sounds very much like he is not giving any solutions to help us and doesn't want to help us.

We are currently investigating several legal options:

- Legally what can we do about this Advance Directive - ie could it be over turned if she was deemed of not sound mind when she enacted it?
- We believe the hospital have done something wrong in terms of their duty of care 

The other thing though is if we do go through any legal means, ultimately is it in the best interest of my sister and her quality of life? 
 
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HateEDwithApassion
Bigbroj:

My heart breaks for your family. I'm in the US and don't have answers for you, but I feel terrible for your sister. She has been lied to for so long by the ED, and she just can't see how things will ever be different, I suppose. Thank you ninhursag - success stories, especially those that once seemed impossible - are so uplifting and hold out promise that all the battles are worth it.

I wish there was more I could do or say, but I wanted you to know that another forum member is here for you.
19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
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Sotired
Honestly,this is a situation where only your family can make the call.if you prolong her life, how much quality is there for her?because that's what this may come down to in the end.
I am so sorry.you and your family are in a really tough spot.what do your parents feel about this?because that's important to know too.you want to all be on exactly the same page with this, otherwise there will be issues both immediately and further down the line.
If you went ahead with trying to overturn what your sister has put in place You would need a very good lawyer to overturn it.you would need a place for your sister to be if you did get it overturned.although there are private places I am not sure they could meet your sisters needs.public places are two in number , one in the north island ,one in the south.there is a new mental health unit attached to north shore hospital, it could be worth ringing them to see what they can offer as they do treat people with drug problems there and might have a way of working round what your sister has put in place.that is just a thought though, not a promise of any kind.without some level of coercion by law I cannot see how you could get treatment overseas.is she a good candidate for travel if you could find a way to get her there?because this wouldn't be a one hour, two hour journey-we really are at the bottom of the world.would she survive that?
Does she have any dreams that she needs to stay alive for,any pets,people-anything that she would want to fight for?
I wish I could help more but I cannot think of anything else I'm sorry.you are in my thoughts.
Sotired42
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melstevUK
bigbroj,

What an absolute heartbreak for you all.

The system has totally let your sister down but in all honesty - ten years ago there was not the knowledge out there about eating disorders that there is now and even so, there are still many doctors who are out of date with their knowledge and think that these are illnesses of choice.

I wonder if your sister feels underneath that everyone has written her off and therefore feels there is no point in trying to get well - there may be some tiny place within her that knows she is ill.

I always feel that a patient needs some kind of dreams or something to fight for - as Sotired points out.  This may be an anchor to try and keep her attached to the notion of living in the first instance.

You could be open and direct with her - tell her that you have new understanding of her illness, she has a biological and genetic susceptibility which led her to go down this path, that she is not choosing to be ill even though she feels as if she is choosing not to eat or keep her weight up.  Also that her brain is playing tricks on her and making her feel fat when in fact she is very thin.
If you can get the whole family on side - tell her that you will no longer stand by and do nothing and that you want her to agree to go into hospital just for a couple of weeks.  And that you understand just how difficult it is for her to eat when she has a voice in her head which will not let her eat - but that you and and your parents are going to stand firm from now on against this voice and that you all love her and want her back and that she deserves to have her life back.  Ultimately there is no recovery without weight gain - it is why the structures around getting eating to take place have to happen first, rather than waiting for the patient to decide to start eating and putting on weight (it does happen, but not usually when someone becomes so sick, and spontaneous recoveries are still pretty rare).

If she agrees to cooperate - a long shot - you can then fight for that place in hospital which is being denied at the moment.

It is about changing the dynamic in the situation as much as anything - and that can be the most difficult part in getting change rolling.  

There is a reason why some patients are deemed 'untreatable' - a very cruel word which is misused - but ultimately when high quality clinical care is absent and patients get a raw deal and are left to go downhill.  And that is why your sister is as ill as she is.  High quality care has been missing.

But there is a very experienced psychiatrist in Scotland who suffered from anorexia nervosa when she was young - which led to her becoming a psychiatrist - who uses the phrase all the time:

'There is always hope'.   Your sister is still with you and you still have a chance to do something, however slim.  

I wish I could do more or come up with something more creative - but maybe inspiring words of love will reach her.  


Believe you can and you're halfway there.
Theodore Roosevelt.
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mjkz
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If they did force feed her this would harm her, her body is too compromised and there is a danger that refeeding syndrome'


That is the same for everyone who starts eating again after a period of not eating.  You just have to monitor electrolytes.

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'(My sister) is in the late stages of terminal Anorexia and no treatment can be offered'


Sorry but bulls*t.  Absolutely untrue.

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- Legally what can we do about this Advance Directive - ie could it be over turned if she was deemed of not sound mind when she enacted it?


Absolutely.  My daughter did a similar thing and made herself DNR, DNI, and no force feeding.  It was not honored.  From the website you included:

Will my advance directive always be followed?

No. When deciding whether or not to follow your advance directive, your clinician will consider five questions:

  • Were you competent to make the decision when you made the advance directive?
  • Did you make the decision of your own free will?
  • Were you sufficiently informed to make the decision?
  • Did you intend your directive to apply to the present circumstances, which may be different from those anticipated?
  • Is the advance directive out of date?
I put the two she would fail on in bold.  She is not of sound mind nor is she sufficiently informed of treatment options she could access.

Who can make an advance directive?

The Code of Health and Disability Services Consumers' Rights gives any person who is legally competent to make a health care choice the right to make an advance directive.

If she is eating that little and is that underweight, she is not legally competent.

I'm so sorry your health system has let you down so much but I think you do still have options if you want to force her to get treatment.  I wonder if your entire family sat down with her and talked to her about giving treatment one last shot would be useful.  Tell her that you will support her decision for the advanced directive only after she has gotten treatment, that you have hope for her and that you will as a family help her through this.  It is not easy in any country to force someone into treatment but it can be done.  Again using the media maybe a great tool to force the health system to treat her.

There is a place in the US that takes patients from around the world and offers free care. It would be worth talking to them and maybe doing an intervention if they will take her stating to her that you will force her into treatment or she can choose this place in the US for one last shot at treatment and have a plane ticket to give her.

http://nyspi.org/eatingdisorders/
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Foodsupport_AUS
I am sorry that it seems as though you, your family, and your sister are all being let down by the professionals in NZ. I realise that there is probably few other people that you can approach there for second or even third opinions. I think it is important to know that generally there is always hope for recovery, even for incredibly ill people with chronic disease. 

Anorexia is only terminal truly in those final days before death, until that point the body has fantastic capacity for recovery if only treatment with adequate nutrition is sought. After all if someone was starving for other reasons eg. famine we would never hesitate to offer food, feeding to help recovery. 

There are a number of studies looking at forced treatment/ compulsory treatment for anorexia, this article discusses them and also has some further articles mentioned  https://www.eatingdisorderhope.com/recovery/self-help-tools-skills-tips/anorexia-can-involuntary-hospitalization-save-lives-what-does-the-research-show
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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