When Ed Doesn’t Leave: Does Palliative Care Play a Role in Treatment for Chronic Anorexia Nervosa?

If you were to look online, I am sure you could discover a plethora of  inspirational stories about dying anorexics who cheated death and freed themselves from their eating disorder. But for every patient who survives the horrors of this dangerous and sometimes fatal brain disorder, there is a story of a patient who has spent a majority of their life in and out of hospitals and treatment centers. These are the patients who, no matter what evidence-based therapy they receive or how much weight is restored, are chronically relapsing. And each time their eating disorder forces them to return to their starvation diets, their physical state continues to go further and further towards a point of no return. Their heart becomes weak, the functions of their vital organs begin to go haywire, and whatever life was in them slowly fades away.    Realizing that their quality of life is greatly diminished and that the world of modern medicine cannot rescue them from their eating disorder, many chronic anorexics long to end their suffering by discontinuing treatment.  Of course though, family members, friends, and medical staff have a hard time accepting this – actually many don’t accept it at all. They force the patient into treatment by getting court orders claiming the patient does not have the ability to make medical decisions.  Though there are anorexic individuals who I believe are cognitively impaired due to their eating disorder and unable to make life and death decisions, I do believe this is not the case for all of the chronically anorexic population.

The majority of chronic anorexics have suffered considerably, both emotionally and physically, during the course of their illness. They realize that their prognosis is grim and it is quite apparent to everyone around them that the idea of them achieving a full recovery is nothing but a dream. Yet despite this realization, doctors and family members continue to insist that the patient receives futile medical care.  We all know that with legal authorization that the anorexic can be force fed through a feeding tube, but many of these chronically ill patients sabotage this form of treatment by yanking out the tube or even secretly diluting the feeding tube formula.  There is even scientific literature stating that if an anorexic completely refuses to cooperate, these invasive measures to stuff the patient with nutrition are likely to fail and even physical progress (ex: weight-gain, medical stabilization) that is achieved using these measures are short-lived.

In my opinion, there comes a point where doctors and members of the patient’s family must accept that curing the eating disorder is not a viable option anymore. It is not humane to make the patient continue to have such a poor quality of life because they are constantly in and out of hospitals and endlessly force-fed.   When it becomes obvious that a patient is unresponsive to comprehensive, evidence-based treatment, I believe the patient has the right to palliative care and hospice.  These two humane alternatives allow the patient to pass away comfortably and be able to end their seemingly endless struggle with their severe, treatment-refractory eating disorder.

Now I know many of you might disagree with me and before you start typing furious comments in response to this post, please consider this example. Let’s say their is a patient who is struggling with cancer. For years this patient has battled the disease and has received intense doses of chemotherapy, radiation, and has even enrolled in multiple clinical trials in hopes some experimental medicine would end his/her fight.  Unfortunately, the cancer has metastasized and now curing the cancer is no longer a possibility.  The doctor has suggested to put the patient on a chemotherapy regimen in order to keep the cancer at bay and prolong the patient’s life. After much deliberation, the patient has decided NOT to go on the chemotherapy regimen and instead receive palliative care until the time of his/her death comes.

I argue that a patient with chronic, treatment-refractory anorexia nervosa is no different than the patient with incurable cancer I described above.  If an anorexic patient has suffered with their disease for so long and has been unable to respond to treatment at even the renowned hospitals and ED centers, the patient has the RIGHT to end to treatment and receive compassionate palliative care.  PERIOD.


27 thoughts on “When Ed Doesn’t Leave: Does Palliative Care Play a Role in Treatment for Chronic Anorexia Nervosa?

  1. I think there is a point where you should have the right to choose to stop fighting or being forced to fight against your illness. Depression alone can make you feel like giving up, but imagining that plus a lifetime of chronic anorexia would definitely make you feel hopeless. I love this post.. Never heard anyone else describe forcing treatment on the chronically ill as “Inhumane” but I believe it really is!

    1. Forcing treatment on patients with a disease that IS NOT and likely WILL NOT respond to treatment is inhumane – and that goes for eating disorders too. I am really glad you agree with me because there are SO many individuals (especially professionals) who would like to burn this post in a bonfire. Many eating disorder professionals hold this false belief that they can cure all eating disorders if they adequately weight restore the patient and give them comprehensive psychotherapy. What they don’t realize is that eating disorders are like any other disease – they have differing degrees of severity and respond uniquely to various forms of treatment. Unfortunately, there are ED sufferers out there who have an illness so severe that today’s typical therapies do not restore the individual to full psychological and physiological health. People with these severe, treatment-refractory eating disorders should be treated humanely and sometimes that means accepting the fact that treatment must cease and palliative care must begin.

      If you want to hear the opposing sides RIDICULOUS arguments, you can read it here http://www.blog.drsarahravin.com/eating-disorders/palliative-care-for-anorexia-nervosa/

    2. You’re right, no one should be forced to do treatment but that doesn’t mean they should die? someone that is a dr. by letting that anorexic patient to continue to kill themselves and to support that person is proving that the anorexic person is right that they are a lost cause and they should die. that’s wrong. And if someone has depression, MDD if they want to die, then in this case we should let them? No.

  2. I don’t know how much real life contact you’ve ever had with someone who has struggled for a long period of time and been in and out of treatment more than almost half their life. I am one of those. My ED started when I was in early MS and am now in my 35 years old. If it wasn’t for the continued support from my treatment team, family, and friends I would be DEAD now. If they hadn’t forced my IP too many times to count, I would have DIED. There is no such thing as “treatment-refractory eating disorders.” I had no hope for most of my struggle with ED. A little over a year ago, something “clicked” and I am now 1 year out symptom free and in my goal weight range. When I wanted to stop treatment b/c I was hopeless, my team said there is no such thing as a hopeless “anorexic”. I tried to argue, I tried to “prove” they were wrong, but..I finally realized they’re right. Medicine and therapy is not the cure but it will keep you alive. Going into treatment doesn’t cure you. It stabilizes you to a place where you can begin to work on recovery, despite lasting medical side effects (conditions). YOU have to want to recover. No amount of treatment will make you recover. Ultimately it’s up to you. And yes, it’s very true that someone who is severely ill is not thinking clearly. It’s impossible. At that point your brain doesn’t function enough to be able to make clear, decisive decisions. Did you experience a change in your concentration (and ability to read and retain information) when you were at your sickest? I sure did, many times over. IF you can’t concentrate and retain information how can a doctor conclude you’re making a clear decision? You may want to think about all of this before you start to make assumptions that there is a category of “anorexics” who are doomed to die from their ED and never recover!!!!

    1. Thank you for sharing your story. I am sorry to hear you had to struggle with an eating disorder as well. My eating disorder started when I was 9 and I have also had my share of hospitalizations. I am glad you had a wonderful treatment team that encourage you to keep fighting and stay strong. It is magnificent that their encouragement kept you alive long enough where you could finally see the Ed wasn’t the best way to live out your life.

      Though I know my post sounds extraordinarily pessimistic, I think you are missing the point. There are patients out there right now who have been battling anorexia nervosa for years. They have been hospitalized dozens of times. They have been forced fed. They can no longer keep their jobs and have strained relationships with family and friends. This is no quality of life and I am SURE you can agree with that. Now despite even the care of the most renowned eating disorder specialists, there are some patients who’s brain disorder (yes anorexia nervosa IS a brain disorder) is so severe that they are physically unable to reach a state of full remission from their eating disorder.

      In serious cases like these, it becomes quite obvious that these orthodox treatment modalities are not effective for these chronically ill patients. Therefore, it is necessary for the patient’s medical team to reevaluate the treatment plan. No longer should the goal be to get the patient to a full recovery because it has become quite apparent that reaching this state is not realistic goal if the patient has been unresponsive to all other evidence-based treatments. The goal should now be to give the patient some degree of medical stability and quality of life. This may include but is not limited to continuous psychosocial support, addressing current medical issues, and designing a meal support program that is acceptable to the patient and gives the patient enough nutrition in order for them to continue daily life activities.

      There comes a point where an eating disorder patient may become to ill to return to full health. Eating disorders are biological brain disorders that are actually believed to be mostly caused by genetics. I think that in chronic anorexics there may be certain gene mutations that result in the patient’s inability to enter recovery. Physicians must accept there are going to be patients like this and they need to be prepared to create a treatment protocol that will address the chronicity of the patient’s illness.

      For further information on chronic anorexia nervosa, please check out these links:

      1. Uhm, claire….No one can be in full remision from an eating disorder, so does that mean we should go kill them all off. I know a girl right now who has to take pills because of failing organs THAT IS SEPERATE FROM AN EATING DISORDER. Okay, what you are is two different things. Organ failure is not the same as an eating disorder. One chooses to stay sick .and if they do have organ failure or other aspects of a deterating body that will be taken care of differently. I think I understand the point you are trying to make, you just didn;t word it correctly. When someone with an eating disorder (chronically so) is dying from there body giving up on them versus the eating disorder different measures are taken. An eating disorder is all in your head. However, what happens to your body is real- and if someone is dying from the damage they did to their body due to the eating disorder the will be taken care of like you are saying and making them comfortable before they die. That’s different then letting someone die because of an eating disorder. The person should still be fed and taken care of just like any other human on the planet WHILE making them comfortable while they die. I actually see what you are saying now, you just have worded it compeltely backwards. The eating disorder is in your mind. what happens to your body is a cause of the eating disorder not the eating disorder itself. if someone is dying because of the damage theve done to there body they wull be taken care of like so, however, that person should still be fed. That person dying from eating disorder damge (not dying strictly from an eating disorder) should be taken care of in hospice like any other patient, which would include eating WHILE making them comfortable while dying. These are two different things claire. I get how you are combining them as one because they are dying because of the damage there eating disorder has caused. but it’s really a seperate senerio. No one should die because they are “chronic anorexic” They should be made comfortable if there eating disorder has permanetly damaged there body. It’s honestly two seperate things.

  3. I appreciate this post. Though most people might think it is ludicrous I actually have a great appreciation for it. I struggled for years and was tube fed… My ANA gets so twisted and bad I start to fear drinking anything. And no one really understands. While I had recovery for 13 years I never learned to want to live. I just accepted it’s what I had to do. Now back in full relapse I am overwhelmed and exhausted of this fight. While I am not tube fed weight yet I know I am headed there and I know in my heart I am the one in five who will die from this. I am afraid to even drink water at this point it has gotten so out of control again. This is such hell and I fear re hospitalization is not far away. Truth is I have lost my will to be saved. I wish there was a way to respect this and let me go. Doesn’t mean you love me any less. Thank you for writing this.

    1. I am so sorry to hear your eating disorder is hurting you so much. I know this sounds rather frightening, but I highly suggest you speak with your family physician and see if she can refer you to any supportive services. These services include a therapist, psychiatrist, and maybe a dietitian. The goal of establishing this team of specialists is not to force you into recovery but to give you psychosocial support and increase your quality of life.
      If you need someone to talk to or need support, please contact me by pressing the contact me tab and writing me a message. The message will go directly to my private email and I will be able to privately email you back.
      I will keep you in my thoughts and prayers and I hope that you receive the care you deserve 🙂

      1. Thanks Claire my doctor suggested I just go on a couple day fast and not eat or drink anything a couple times a month to gain the feeling of control. He has also started pulling me off a bunch of my medication including cutting my anti anxiety medication by 30 pill in one day. I don’t have much hope for him. He said if all this abuse happened so long ago why are you still struggling with this? I don’t have insurance at the moment so I don’t have options. I am separated from my family and have recently hooked up with a therapist but I am afraid it is far too late. And I pay private out of pocket for all of these so I can’t really afford a psychiatrist on top of this. It’s life. I am just ready for the battle to be over. I need peace from it. I knew if I ever came back here I would not survive a second time. Sometimes it is just that way.

      2. I don’t think your doctor would suggest going on a couple a fast, even if it is just a few times a month. Have you considered seeing a different doctor because I find it extraordinarily unbelievable that a doctor would say something of the sorts.

        I am sorry to hear you do not currently have health insurance. Have you checked out the HealthCare Marketplace that government has set up. They have some very affordable plans out there.

        You currently are in need of some psychosocial support and I really think it would be good if you had a support team of medical professionals to help you on this journey and to increase your quality of life.

        If you ever need someone to talk to, please consider emailing me at clnaklaisner@yahoo.com

  4. i’m not sure where you are getting your information from. I’m treated by a team at one of the best programs in the country. Eating Disorder’s are Biological Disorders, with a combination of genetic, environmental and psychological factors. Your brain isn’t off because you have an ED. Yes your brain chemistry can alter while in the throes your ED due to the lack of nutrition. But that “alter” is reversible with proper nutrition. Another interesting fact, Starvation can cause depression which in turn can cause the feeling of hopelessness. However, with nutrition rehabilitation that can all be reversed.
    I was one of the ones that had been classified by others as hopeless and was suffering from serious medical complications. The longer my struggle went on the worse off psychologically and medically I became. Never during any time during my struggle did I ever believe I could recover. I lost jobs, I lost my closest friends, I had to put my education on hold, I lost the trust of my family and I lost my freedom. I lost my dream of dancing professionally. The more I lost the more hopeless I became and in return the worse my ED became. I spent months on end in treatment, sometimes voluntarily sometimes involuntarily. I would be stabilized and discharged and then return immediately to my old ED ways. Yeah that is no way to live. But no matter how much treatment I received, If I didn’t believe I could recover and make goals there was no way I would be fully successful with recovery. But my team did not give up. when my safety, medically and psychologically was at risk, they took measures to make sure I was safe.
    Most medical complications can either be reversed or treated to the point of being able to live a full life.
    You make it sound as if there is a special group of people who are doomed to never recover. That is NOT true. I’ve seen others, that I met the first time in IP, go through the same hell as I. And yes some are still struggling, but they have allowed themselves to come to a point where they are willing to participate in treatment and have are able to return to a semi-normal life. And then I have seen others still going in and out of treatment. And of course others who were able to get a solid foot into recovery.
    No one ever said recovery was easy or a straight path. This past year I have struggled a ton with body image, medical issues, but I have allowed myself to open up in therapy and work through each struggle. i’m not saying I may never fall back into my ED symptoms and thoughts. I don’t know if I’ll ever say i’m fully recovered. But I can happily say I am IN recovery. I am working, earned the trust of my family back, reconnected with friends and am balancing outpatient treatment as well.
    There is hope for EVERYONE!!!

    1. Exactly, only those who are sick and with a comprimised state of mind will believe this. I know a girl who was extremely ill- thought it was going to take her life- recovered. I’ve been suffering for more than ten years. I never wanted to recover, but I’m recovering now. The person with the eating disorder decides to stay sick. it’s not ever chronic.

  5. I completely disagree. You have know way of knowing at what point someone simply won’t recover. I’ve spent years in and out of hospitals and treatment centers being weight restored. These places have saved my life. What if on my fifth stay someone said, “oh well, she’ll never get better.” Eating disorders are complex and people take different paths to recovery.

    1. That’s true. Everyone’s path to recovery is different. I am unsure if people don’t understand where I am coming from so here is a scenerio.
      Miss A, 45 years old, lives alone and does volunteer work. She has been receiving medical disability and has supported herself through social assistance. She has had anorexia nervosa, the restricting subtype, since she was 18 years old and has been hospitalized 17 times for her illness. At entry into the program, she weighed 63 lb (body mass index, 11). She had chronic suicidal ideation and had no interest in intensive inpatient eating disorder treatment.

      Our team followed her in the community with the goal of improving her quality of life and trying to maintain some degree of medical stability (as opposed to disease management and weight gain). Treatment included ongoing psychosocial support, working with Miss A to develop a detailed safety plan for her chronic suicidal risk, and assessing and managing her considerable medical instability: she has severe osteoporosis and has sustained 4 fractures in the recent past. She is severely constipated, extremely weak, and tired, and has frequent episodes of dizziness and fainting and a history of seizures. On presentation, she had abnormal laboratory values, including elevated liver enzyme levels; decreased creatinine clearance; and decreased levels of albumin, white blood cells, and serum glucose. Her heart rate was 40 beats per minute.

      The clinicians in the program spent a significant amount of time liaising with other supports, including her primary care physician and her family. They also set up a meal support program that was acceptable to the patient: it included liquid supplements and twice-weekly supervised lunches in her apartment.

      With this support, Miss A has been maintained out of hospital for the past 2 years and is able to continue her volunteer work.
      THIS CASE WAS TAKEN FROM: http://pro.psychcentral.com/chronic-eating-disorders-a-different-approach-to-treatment-resistance/00338.html

      1. From your “scenario” it sounds like you think it’s ethically ok for doctors to allow a patient to continue to live the “anorexic dream”…. Being free and maintaing a very low weight. Think about this, it the patient were at a healthier weight and medically/nutritionally stabilized they would “often have dizzy spells, chronic constipation” and “a heart rate of 40”. All of those symptoms are because of her low weight and restriction and can easily be rectified. You also make is sound like it’s ethically ok for someone with “chronic suicidality” to not be in a higher level if care. There are states with very specific laws protecting those individuals where their safety is an issue. Laws that state a person needs to be in a higher level of care. Also maitaining a low weight will cause depression so once again to restore someone’s weight can easily reverse that.
        I don’t see how ethically you can see this “scenario” is ok. The provides are allowing their patient to stay unhealthy and potentially die.

      2. I respect your opinion. This is a hard issue to come to terms with and it involved a lot of thinking and researching on my part. I hope that you do some research as well in order to form a balanced opinion.

      3. I think almost 3 decades of struggling is enough research. I came from an era where there weren’t treatment centers like there are now. And hardly any reseat was being conducted. And the mental health was considered taboo. I can tell you that if anyone in my HS class suffered from any type of mental health issues/receiving any type of treatment I wouldn’t be able to name a single name!
        In MS health class, our textbook had ONE paragraph describing anorexia and bulimia. To admit would have been so social suicide.
        So yeah I believe that with almost three decaces of being sick and beig in treatment for a little less I have seen treatment approaches evolve as well as research.
        Granted I have lost “friends” to their disorders. And I hear frequently of someone dying. No one is immune. And the sad part is many of those, at the time of their death they are not in IP. And others die from suicide from the hopelessness they feel from their eating disorder.
        But I have also seen people fight their team like hell and end up coming up on top. So once again allowing someone to settle into their ED is completely unethical.
        EVERYONE had the chance of stepping into recovery. For a team to settle for something less is medically unethical!

      4. You are not going to be a good dr. if you think this claire. it’s sick. This person decided to stay ill. They need to be committed to a hospital. you as dr.s are just watching her die and this is disgusting.

  6. I agree with this post in many ways – forcing recovery upon someone will almost always end in consequent relapses. I believe that if someone doesn’t really want to get better the there is barely anything you can do. However, I do think that before giving in to the eating disorder and letting it take the person’s life, there should be a significant amount of therapy and intervention. Anorexia is different to cancer in that it is a mental illness and so a lot of the time rational thoughts are absent, and therefore sensible decisions can’t always be made by the patient. While starvation and death may be what the eating disorder wants, the person should be helped into realising that they can get past it if they are willing. At the same time though, I don’t believe the way to help an Anorexic is to force feed them with a tube. To me this seems unethical, and will cause great distress with little to no positive outcome. Great post on such a controversial topic!xx

    1. I agree, that the person won’t recover if they don’t want to. nor should they be forced fed. However, that does not mean dr.s should let a patient die- that is illegal and not what they are supposed to do. that person should be helped to a point of stabilization even if it means in and out of hospitals a person should never have drs give up on someone to the point of letting them die.

  7. I read some of these replies, and my heart breaks at some of the experiences that people with ED are having. My only exposure to ED has been my own daughter, reading this blog, and other stories online. I personally know no one else with an ED.

    I know when I first found out about my daughter, I did everything wrong. I was ignorant, and lacked information. The only thing I knew about ED was what I had learned from society and the media. I must confess, the first three or four days after I found out were living hell for my daughter. Then, things got worse, when we were forced to admit her to a psychiatric hospital for a week. Some of the things I saw in that week were horrifying, and I am not only referring to what the staff did, but the interactions I saw between other patients and their families.

    I love my daughter, she is my life, along with my other children.I used a ‘tough love’ approach those first few days, only because I did not know any better, and only because I thought I was doing the right thing. But, I could quickly see that it was not working, and that it was destroying my daughter.

    When she was admitted to the psych hospital, and I was so severely restricted from seeing her, it felt so wrong. I truly believed that, as her mother, I was the best person to help her, *I* knew her better than anyone else. I just didn’t know HOW to help. The hospital was NO HELP at all in educating me, quite the opposite, they believed the less ‘interference’ from me, the better.

    I literally lived on the internet round the clock that week, and by the end of the week had a much better idea of how to move forward. Of course, the hospital absolutely did not agree with me. On the contrary, the discharge papers clearly stated that they ‘had major concerns regarding parental involvement with treatment’, and that my daughter’s greatest problem was that ‘her parents were far too enmeshed in her treatment’. It was the biggest load of crap that I ever heard, and by the grace of God, we got her out of there, and into a hospital that just treated her like any other sick kid.

    I’m still learning. I am far from perfect, but I try really hard. I have learned a lot and seen a lot since then, but only because I opened my eyes and looked around. My daughter’s doctors are so impressed with her. Medically speaking, she is doing phenomenal. Mentally speaking, she is getting there. They said she is so far ahead of where they expected her to be in dealing with her ED.

    Why was our daughter recovering so much quicker, even when we were doing things outside of the norm, like actually ENCOURAGING physical activity? Our daughter is not rebellious, we are not arguing, she is actually requesting food, or suggesting alterations to her own diet, she is engaged in her own treatment. Please do not take this the wrong way, we are not perfect, we have made many mistakes, I do not claim to have all the answers. But, there is one major difference I think I am noticing. And please, if I am wrong, please correct me.

    Except for the first few days, where I have already admitted I made a lot of mistakes, I support my daughter. I do not tell her anything is her fault. I do not blame her for her illness anymore than I would blame a child for strep throat. I never put her down when she falls, I do whatever I can to lift her up. I try to keep her active in her own treatment, and encourage her to make choices, and speak up if something is not working.

    Yet, when I read the stories of others who are struggling, I feel so sad for them. I see them getting blamed. I see them being told things like they are doing it for attention, or its just vain body image. I see things like parents blowing up over things like choosing diet salad dressing instead of a ‘full fat’ version. I see parents and other support people not listening to things like a need for routine, having meals on a schedule, having a set diet, the list goes on. Correct me if I am wrong, but the thing I see missing in the people struggling the most is…unconditional support. A cheerleader, someone to pick you up when you fall, someone to help and not blame.

    Maybe the change we need to make to treatment programs is providing a support person for the person who is suffering from ED.

  8. I have a feeling you are saying this becayse you think it applies to you and you wish to end it. This is all a passive form of suicide, and it’s extremely scary . You don’t know if you are not capable. and let me further this by saying cancer and eating disorders TWO COMPLETELY DIFFERENT THING. The cancer patient doesn’t choose to stay sick the eating disorder patient does. And NO, NONE. ZERO, not at allllll can a chronic anorexic even think clearly it’s an oxymoron, you should know this especially knowing about the brain, you are not clear to make these choices. if the eating disorder patient wants comfort they choose to recover. No one can “fully recover” but someone can find a balance of choosing recovery day in and out, ever.single,person. Being someone that has had my eating disorder for over ten years, I have never had a clear enough mentality to make my own choice. And I would have agreed wiht you, see the only people who will agree with this claire is those who have a comprimised mind from there eating disorder, such as yourself, only people who are lacking the weight and nutrients to think reationally, you included, will agree with this. and it is no use of arguing this concept because you’re too ill to grasp your mind around more than an eating disorder life, and it’s truly sad. Eating disorders consume the mind, even when you think they don’t. You probably think you think clearly and that is the farthest thing from the truth. Only a sick person will agree with this. No one in recovery will so this is a biased thought. if only the sick think this then why do you think it’s not legal? I think you should ponder that. Only the SICK will agree with those, drs. don’t- wonder why. Therapists- nope. People in recovery- not a chance, Those who study the brain for a living- hellll no. Only the sick will agree to this.

  9. Ps claire the link your giving to “support” your cause on Miss A. is actually breaking your cause. they aren’t helping her die as you thinkl they should do- which is inhumane, p.s, they are just actually LISTENING TO HER WISHES, and that includes her eating how she wants to which will sustain her longer. Once again to clarify they aren’t letting her die like you want to let your future patients die.

  10. You certainly have to want to change, and I’m glad that some people do change after a very long Time of suffering. I just believe that if you have been severely ill and have a low quality of life, that treatment should be your choice. Definitely , there should be attempts against your will (for your best interests) before that point though.

  11. My sister is meeting with hospice today. She is 50 years old, 5’6″ and weighs 61 lbs. If accurate, her BMI is about 9.4. My parents are unable to truly accept she is going to die from this disease. Even though my mother has a PhD is psychiatry, she keeps begging my sister to try and get better. I am incapable of even remembering the number of private hospitalizations my sister has had OR the number of Medicaid hospitalizations. She has spent the last 30 years in either private institutions, locked psych floors, nursing homes and half-way houses. She has had no quality of life, is incapable of functioning on her own. I think my sister tells my parents she wants to live because that is what they want to hear. I believe that her AN is a passive form of suicide at this stage. I do not feel she should be force fed at this point. Maybe 15 years ago, but too much damage has been done (both mentally and physically.) My other sister and I are exhausted. This disease destroyed my parent’s marriage, has put a tremendous strain on their finances and has rendered them both truly unable to enjoy their lives with this never-ending heartache and burden. I pray that the hospice can provide the support to my parents, to accept the inevitable outcome and they are able to find some semblance of peace that they did try everything they possibly could. THANK YOU for letting me say my peace.

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