August 31, 2012

I think it is murder

People are talking about recent cases where judges have been asked to decide whether gravely ill anorexia patients can be "allowed" to die.

I think it is murder. Slow murder that has been going on for years with many accomplices, with the judge as the last. To hospitalize without restoring normal health, to depend on the mentally ill patient's insight and motivation, and to believe the real person in there "wants" to die: these are crimes. Unwitting crimes, I know, but we would do better for someone in a coma. In fact, we do.

This is all a basic misunderstanding of the nature of anorexia nervosa, which robs patients of insight and motivation just as a coma robs the patient of consciousness.

If they "allow" her illness to kill her they are making themselves more comfortable, not her -- she only gets one life and it is not her fault or choice that they've failed her so thoroughly for so long that THEY have run out of options. Or really, WE have.

These half-lives and deaths are our fault. Time to step up, folks. We need to change the public view of anorexia, the healthcare policies, the legal barriers, and our own personal fears.

These patients need our help, all of us, and we're failing them.
  • Anorexia is not a choice.
  • Being unable to eat is not a choice.
  • Having symptoms of social withdrawal and food phobia and obsession and body dysmorphia and binging and purging are NORMAL AND EXPECTED for those who are malnourished.
  • For those with a predisposition for an eating disorder NO amount of malnourishment is acceptable.
  • Simple short-term re-feeding is not enough
  • The patient doesn't need to understand why, be motivated, or cooperate.
  • They are ill: what's our excuse?
  • Without the entire ED community coming together, LOUDLY, none of this will change. But the truth is that most of the ED community doesn't understand eating disorders and are part of the problem. All the attention to self-esteem and loving one's body and Size Zero models and wanting to be thin: it's a distraction. All the talk of "control" and "having no voice" and "attachment" are also distractions.


14 comments:

  1. According to the newspaper article, this patient did not express a wish to die. Therefore, if the NHS stops feeding her, she will die and her death will have happened without her consent. I agree, Laura. This is tantamount to murder. The patient does not understand the consequences and isn't in a position to give informed consent.
    Furthermore, eventually, I would like to see an inquest into the circumstances of the death. Let's have a thorough investigation into the kind of treatment this person was given when she was initially diagnosed with AN many years ago. This would add to the clinical literature and provide evidence for what, perhaps, consitutes poor, ineffective, and dangerous treatment. As a society, we should learn from our mistakes. I hope this case is not simply swept under the rug and forgotten.
    CB-US

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  2. I would like to read the actual case report from the Court of Protection but cannot find it on the internet. I don't think it's easy to make an informed decision on the basis of newspaper articles. Even so, I was deeply shocked and astounded by this case.

    I think the term 'murder' is too emotive and not necessarily accurate. The term 'neglect' is more appropriate - because this woman's weight should NEVER have dropped to 7.7 kg.m*m!!!! How does any human stand by and 'enable' a mental illness in a fellow human lead to starvation?

    Once a person's weight falls below a certain, critical level, the physical risks of re-feeding are very high. Re-feeding itself could lead to death. Moreover, the more starved a person with anorexia nervosa becomes, the harder it is for them to accept food.

    What saddens me is that she did not want to die. She couldn't bring herself to eat - which is an entirely different matter.

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  3. I agree on the last.

    But really, when exactly are we to be emotive? Is is neglect to see someone drowning and watch them without helping? Is it neglect to step on their hands or make them give us an exact script for "help me?" Is it neglect to leave open wells where children and the blind are known to go?

    When DO we get emotive? When DO we say "stop!"

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  4. Sadly, in this country, when a case of neglect arises, the local authorities or PCTs or other bodies supposedly responsible for the welfare of a patient, run screaming to their lawyers and we get is another "review" and a few resignations (See Victoria Climbe and Baby Peter!).

    xx

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  5. Totally agree, Laura. I am recovering from AN and my boyfriend has been fully recovered for many years. Both of us received 'force-feeding' in the acute stages and neither of us felt it was in our 'best interests' at the time (understatement! we both fought tooth and nail against it). But both of us agree that it was the right - the only - decision at the time and we would have starved to death if parents/doctors had let us dictate what was in our own 'best interests.' That is the nature of the illness.

    And of course when your brain is that starved there's no way you can make rational decisions! In fact, it angers me that they describe this woman as 'highly intelligent'; to me that just indicates that she's managed to run rings around them, which in my experience is one of the reasons AN patients take so long to be 'discovered'/it takes their parents so long to be believed by clinicians - that tendency to be articulate, convincing and competent-sounding despite being so ridiculously unwell. And by bowing to her wishes the judge and doctors are basically validating the illness and agreeing that it's legitimate to starve yourself to death because of a fear of weight gain. UGH!

    Anyway, didn't mean to rant, just to agree - this is appalling and unconscionable, in my view.

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  6. SHE doesn't wish to die, so it feels uncomfortably as if society wants her to. Then this issue will go away again for a while & we won't have to ask/answer any uncomfortable questions.

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  7. I totally agree with you, Laura. Anorexia is definitely not a choice. It is a lethal mental health illness with severe physical corollaries, and this is something that people find difficult to understand and accept.

    People, even professionals who should know better, seem to think that re-feeding an anorectic will make them recover, whereas, in fact, after re-feeding, things will get much worse before they get better, and there does not seem to be enough in place to deal with this.

    I know that when my AN is at its strongest, I feel like I want to die, but really, deep down, I don't - I just want all the terrible feelings and anorexia to disappear, although I cannot see this at the time. When I grow a little stronger, I look back and am ashamed of my feelings. Malnourishment means that the brain is starved and it is near impossible to think clearly or rationally. I am therefore grateful for having been force fed by an NG tube, although at the time, this was the most horrendous thing that I felt could be happening to me.

    This girl didn't want to die, and even if she did, with recovery, life would have returned to her - she had a life waiting for her to live to the fullest. How can the medics live with themselves with their appalling and immoral behaviour? Eating disorders are so complex - you're right, Laura, it is 'time to step up'.

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  8. This story is really upsetting and frighting to me. As someone who is in recovery from anorexia, I am very thankful that my treatment team, family and friends continued to fight for me when I wasn't fighting for myself. When deep in the illness, extremely malnourished, I had intense feelings of wanting to die. I felt trapped in a lose lose situation (constant starvation is excruciating as well as living with the mental torment of anorexia but the idea of going against my deepest fears and eating more felt worse.) I couldn't imagine living another day with the illness, but I was too irrational thanks to not receiving enough nutrition that I didn't feel that I had the strength to get better. Once I began the re-feeing process those hopeless feelings started to disappear. In fact it pains me to think that I felt that death was the only option.

    Although normally I am very rational and insightful, I know that in the depths of the illness I couldn't make a rational decision at all. I feel that this is true of most people, when your body is starving.

    Sorry for rambling, but I agree with you, if we saw ED's for what they are instead of choices, more people would get the help that they need before it comes to this point. She was failed long before now and that is the most upsetting part.

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  9. I think it's criminal neglect, although that happened ages ago and the judge's decision now may be the only possible one given the circumstances. If a medical procedure isn't possible (and I DON'T know the circumstances so I can't say whether this is the case here or not but re-feeding from such a terribly terribly low BMI isn't something I've heard of being done successfully before) then it MAY be best not to attempt it. What is just unbelievably awful is that she was allowed, not by ignorant parents or useless GPs, but by psychiatric hospital services who should have been helping her, to get so sick in the first place. The publicity states that she had spent "90% of her life in hospital since 14". WHAT THE H*&& WERE THE HOSPITAL(S) DOING TO ASSIST HER DURING THAT TIME?

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  10. People have been refed from a BMI in the upper 8s.

    If she lost weight in treatment, then it's largely the norm to return someone to at least where they were before.

    Pallative care is the right treatment approach for some people. Of course though it's sad that it has to come to that for anybody. I'm not saying that is the right for this woman, but also,so much of her history is not known to us.

    I also hope that it works out for the woman E who was forced into treatment. Forcing treatment on some people at more advanced stages of their illness may result in a deteoriation of their condition. On this Strober's article is worth a read.
    http://www.ncbi.nlm.nih.gov/pubmed/15478130

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  11. I agree that this woman's case isn't really known to us at all. The British Medical Journal report on the case didn't appear to argue that the judge HAD suggested palliative treatment although this could be the inevitable result of not intervening more strongly. It does appear however that she has spent a lot of her short life in psychiatric hospitals and that this has not resulted in any benefit to her physical health, quite the contrary. While this doesn't surprise me, it certainly appals me. How can a system deprive someone of their liberty, keep them in a hospital environment yet fail to treat the illness that has led to them being there? Even if there were several co-morbid conditions competing for medical attention which I will agree, can complicate matters considerably, this one disorder which is known to be serious, sometimes fatal, must surely have been a priority. Why did her caregives not give her care for it until she became so physically sick that there was little hope of recovery?

    I don't have access to Strober's full article. If I did I might understand his points better. For the moment, while I fully agree with the point about avoiding the risk of iatrogenic effects of rapid weight restoration (the UK's MARSIPAN guidelines deal quite comprehensively with this http://www.rcpsych.ac.uk/files/pdfversion/CR162.pdf) I can't really work out what he means by "the deleterious influences of therapist countertransference". Can you explain?

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  12. Marcella, I forwarded the article on to Laura to send to you and a few others on this topic.
    This article below which is freely available on the net is interesting.
    Sometimes, rightly or wrongly, some treatment teams will make that decision for patients as to whether palliative/hospice care is appropriate, whether they want it or not. The below article was controversial, but the woman’s team looked at her care to date and likely outcome and decided that palliative/hospice care was more appropriate for her. There are other similar case studies out there.
    Some people do live in the community with very low BMI’s as agreed by their treatment team, but others will be forced in and out of treatment for years at those same levels and seem to just become extremely jaded and institutionalised by it and show no signs of responding to treatment. As you said, the reverse can sometimes also happen for people for whatever reasons.
    http://onlinelibrary.wiley.com/doi/10.1002/eat.20701/pdf

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  13. Marcella, In the article, Strober has a section discussing therapist transference. He doesn't specifically define the term, and it has different meanings in different contexts. However, in the discussion he says that in treating AN patients, therapists "must be prepared for a grim, tedious, and draining experience." Over time, he writes, therapists "are likely to feel that the once comfortable space of their own office is suddently small and stifling." Working with AN patients, he says, will "soon become maddeningly slow, grinding, and boring. Pity, irritation, frustration, annoyance, the desire to be free of the patient are certain to be rippling scarcely beneath the therapist's skin." It is, he says, "often the case that time spent with these patients involves long stretches void of illuminating conversation" and therefore "therapists must have the inexhaustible capacity for enduring monotony." Finally, Strober writes that "Anger, frustration, a consideration of the patient's place in the world as pathetic -- each of these contaminants must be effectively neutralized in order that this element of the patient's care be sustained."

    This is not a very appealing picture Mr. Strober draws of the professional community. For a related discussion, see Warren, "A Qualititative Analysis of Job Burnout in Eating Disorder Treatment Providers," Eat Disord 2012 May; 20(3): 175-95 http://www.ncbi.nlm.nih.gov/pubmed/22519896

    It is interesting to contrast this description of the way in which therapists often relate to AN patients with how parents do. Generally, parents treat their kids who suffer from anorexia with kindness, patience, and warmth. LeGrange, "Parental expressed emotion of adolescents with anorexia nervosa; outcome in family-based treatment," IJED 2001 Dec; 44(8): 731-4
    http://www.ncbi.nlm.nih.gov/pubmed/22072411
    CB-US

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  14. Strober is, in person and on paper, always poetic and entertaining. Accuracy, applicability, and universality do not necessarily follow.

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