To kill or to violate?

By Charles Foster

A highly intelligent 32 year old woman has profound anorexia. She has had it for years. It is complicated by alcohol and opiate dependency, and by personality disorder. Her BMI is 11.3. A healthy BMI is around 20. Less than 17.7 is in the anorexic range. Less than 14 indicates dangerous weight loss. Over the last 4 years her BMI has been well below 14. She describes her life as ‘pure torment’. All the things she wanted to do have been frustrated by her illness. She feels unable to give anything to the world, or to take anything out. For years she has had intense treatment for her anorexia and related conditions. On about 10 occasions she has been sectioned under the Mental Health Act. One of those periods lasted almost 4 months. Twice she has executed advance decisions refusing life-saving or life-prolonging treatment.
There are only two options: death or the violation of her autonomy . If she is not admitted against her will to hospital, detained there for not less than a year, and forcibly fed under physical or chemical restraint, she will die. She understands this perfectly well. She doesn’t actively seek death, but doesn’t want to be force fed. As well as the anorexic’s usual horror of calories, the forcible medical administration of nutrition reminds her horribly of the sexual abuse she suffered as a child.
Her loving, articulate parents want her wishes to be respected.
The prognosis is not good. Even with the draconian force-feeding regime, it cannot be said that there is a probability of a good result (in the sense of giving her a life acceptable to her). But it’s possible. The chance cannot be said to be negligible.
That’s what landed on Peter Jackson J’s desk in May. What should be done? The approved judgment, A Local Authority v E and others [2012] EWHC 1639 (COP) was handed down on 15 June 2012.
First, she was not capacitous. That meant, absent a valid and applicable advance decision, that the best interests test principle should govern the decision-making.
It was decided that the advance decisions were not made at a time when she had capacity, and were accordingly not binding. ‘I consider that for an advance decision relating to life-sustaining treatment to be valid and applicable’, said the judge, ‘there should be clear evidence establishing on the balance of probability that the maker had capacity at the relevant time. Where the evidence of capacity is doubtful or equivocal it is not appropriate to uphold the decision.’ (para 55). This is an autonomy-honouring declaration, although some will no doubt feel, wrongly, that to apply such a high standard may frustrate the provisions relating to advance decisions – provisions which, of course, are designed to facilitate autonomy.
So: where did the patient’s best interests lie? It was a close call.
When you’re assessing best interests in such cases, you do a literal audit. You draw up a balance sheet. On one side are the factors in favour of life; on the other the factors in favour of death. It sounds cold and scientific, as befits a determination which is notionally objective. But then comes the weighting of the factors. Not every factor is equally significant. The weighting is necessarily subjective and intuitive. But the patient’s past expressed wishes and (even if she is not technically capacitous) her present views, weigh very heavily. The judge noted that the patient’s wishes and feelings ‘are not the slightest bit less real or felt merely because she does not have decision-making capacity…..particular respect is due to the wishes and feelings of someone who, although lacking capacity, is as fully and articulately engaged as [the patient].’ (para 127).
The judge concluded that ‘[t]he competing factors are…..almost exactly in equilibrium, but having considered them as carefully as I am able, I find that the balance tips slowly but unmistakably in the direction of life-preserving treatment. In the end, the presumption in favour of the preservation of life is not displaced.’ (para 140).
This presumption is hallowed by constant reaffirmation by the courts, and is now reflected in Article 2 of the ECHR (which provides that everyone’s life shall be protected by law). It means, in this context, that there’s a strong legal presumption that life is valuable. Presumptions can sometimes be very valuable.
The principle is not absolute. It can give way to other considerations: see, eg, Airedale NHS Trust v Bland [1993] AC 789. Also, as the judge noted, the Mental Capacity Act 2005 might have given absolute priority to the preservation of life, but does not. The approach taken by the Act is reflected in the MCA Code of Practice at 5.31:

“All reasonable steps which are in the person’s best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery.”

This meant, said the judge (para 122), that ‘[the patient’s]life is precious, whatever her own view of it now is. She is still a young woman, with the possibility of years of life before her. The prospects of her making a reasonable recovery are highly uncertain, but it cannot be said that treatment efforts are doomed to fail or that treatment would inevitably be futile.’

It was this that swung the balance. Should it have done so?

Many in the lay press think the judge was wrong. They will be followed in due course by many academic commentators. The argument is essentially that this is a suffocatingly paternalistic decision; that a woman who has suffered most terribly at the hands of her disease is being made to suffer further in order to keep in play some irrelevant, antediluvian Judaeo-Christian principles about the sanctity of life; that autonomy should have won the day (cont p. 94).
A few comments:
(a) Autonomy is a victim of anorexia. It is so badly paralysed that it can’t do all the work.
(b) The evidence was that a regime of compulsory treatment had a chance of improving the BMI, and that the patient’s mental state improved significantly as the BMI increased to 14.5/15. Accordingly the regime is an autonomy-facilitating regime.
(c) Death, so far as we know, annihilates autonomy.
(d) The language of sanctity isn’t essential. Many of the cases don’t use it. Say ‘utmost respect’ for life if you want. The presumption still does its job.
(e) There are plenty of secular commentators who regard the notion of sanctity as foundational. Look, for instance, at Hoffmann LJ (as he then was) in Airedale NHS Trust v Bland.
(f) Don’t be scared by the spectre of vitalism. It’s not remotely a corollary of the principle as it is wielded in the courts. Ultra-conservative Catholics, you’re not helping.
(g) Can we really collapse ‘respect for life’ into ‘respect for autonomy’? Won’t there be lots of casualties in the collapse? You might, for instance, end up denying life-saving treatment to young children on the grounds that they’re not autonomous. Would you treat those children because they are potentially autonomous? Well, so is the patient in this case.
The presumption in favour of the maintenance of life is essential. It’s an appropriate tie-breaker in cases like this. It’s an appropriate way of entrenching intuitions and keeping patients safe.
It could be used simply as a way of letting judges sleep better at night – to keep patients’ blood off their hands – but that doesn’t seem to happen. It seems to be used intelligently, with an acknowledgement that it can be an instrument of oppression.

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33 Responses to To kill or to violate?

  • Leeza Gandley says:

    This is beyond appalling. I am HORRIFIED by the protracted cruelty this patient has already endured and will not yet again be forced to endure. It is torture! Long-standing, intractable anorexia has a VERY poor prognosis. Under the best of circumstances, only 25-40% of anorexocs ever recover fully. This means that 60-75% are not helped by conventional treatment approaches. 20% ultimately die. With this logic, this judge might as well FORCE a terminal cancer patient to have chemo for the nth time because the patient happens to be young and — hey, there’s a chance it could work! This woman is suffering a brutal, horrifying illness which is NOT curable and prolonging her Life is sick and wrong. I am sickened to the core, thinking of what this woman has to endure. To an anorectic as sick as this tormented woman, being hooked up to IV nutrition (undoubtedly necessary in her advanced state of severe emaciation) is like hooking up meds for lethal injection. There is NO CURE for anorexia, and when one has suffered for YEARS despite multiple interventions, at some point it is UNCONSCIONABLE, BARBARIC AND DERANGED to keep stabilizing her medically! Forcing her to remain Alive is keeping her in a veritable torture chamber in which the most brutal and sadistic aggressor taunts every conscious moment — and even sleep is no refuge. Let her go! That things could *possibly* get better isn’t justification to keep terrorizing this woman. This ruling sets a horiffying precident and is a HUGE step backwards in terms of patient dignity and ethics regarding the severely ill. Since NOTHING is beyond the realm of possibility — hey, miracles happen, right?! — then by this logic, EVERYONE, no matter what their medical status, should be forced to endure the hell of low-successful outcome treatment. Not. Okay.

    • Shuster, Evelyne says:

      This tragic situation represents a true ethical dilemma where whatever the decision, there are significant losses. Regardless of the torment and torture suffered by this poor patient, the judge is siding on a side of life. Others believe that the judge’s ruling to force-feed the patient is paternalistic and arrogant , and a violation of the woman’s rights to self-determination and autonomy. There is no moral exit from this dilemma, at least none that may satisfy both sides.

  • Khalid Jan says:

    The poor soul must cease to exist; she must be crucified for the sins of the society; yes, a televised, an insane society; a society that tolerates the ugly business of beautiful people; but when the same beauty appears with cracks all over her, the collective call is to do away with her: what a judgement!

  • Leeza Gandley says:

    Corrected response:
    This is beyond appalling. I am HORRIFIED by the protracted cruelty this patient has already endured and will now* yet again be forced to endure. It is torture! Long-standing, intractable anorexia has a VERY poor prognosis. Under the best of circumstances, only 25-40% of anorexics ever recover fully. This means that 60-75% are not helped by conventional treatment approaches. 20% ultimately die. Another round of force feeding will only prolong the horror of the afflicted sufferer.
    That there is a ‘not negligible’ possibility that she could benefit from refeeding (forced treatment rarely if ever successful in AN sufferers and very often inevitably reinforces the eating disorder) is NOT a justification for this heinous decision. With this logic, this judge might as well FORCE a terminal cancer patient to have chemo for the nth time because the patient happens to be relatively young and — hey, there’s a chance, no matter how miniscule, that it could work!
    This woman is suffering a brutal, horrifying illness which is NOT curable and forcibly prolonging her Life is sick and wrong. I am sickened to the core, thinking of what this woman has endured and now must endure yet again. To an anorectic as sick as this tormented woman, being hooked up to IV nutrition (undoubtedly necessary in her advanced state of severe emaciation) is experienced as if s/he is being hooked up to drugs for lethal injection. Abject fear of calories is an understatement. There is NO CURE for anorexia, and when one has suffered for YEARS despite multiple interventions, at some point it is UNCONSCIONABLE, BARBARIC AND DERANGED to keep stabilizing her medically! Forcing her to remain Alive is keeping her in a veritable torture chamber in which the most brutal and sadistic aggressor taunts every conscious moment — and even sleep is no refuge. Let her go! That things could *possibly* get better isn’t justification to keep terrorizing this woman. This ruling sets a horiffying precident and is a HUGE step backwards in terms of patient dignity and ethics regarding the severely ill. Since NOTHING is beyond the realm of possibility — hey, miracles happen, right?! — then by this logic, EVERYONE, no matter what their medical status, should be forced to endure the hell of low-successful outcome treatment. Not. Okay.

    • Anthony Drinkwater says:

      Thank you, Charles, for your well-balanced post. 
      I find it hard to disagree with you and the judgement, especially as I wasn’t there to hear all the evidence. 
      But I can’t help searching for the narrative behind the local authority’s seeking to have a court judgement. It appears that the person herself and all her significant others, ie those who have known her, loved her and shared her best interests for many years, supported the palliative option. Why should a third party want to interfere?
      I’m not saying that the law is an ass, but I suggest that it’s a rather blunt instrument to resolve this very difficult human situation..

  • Khalid Jan says:

    Why women who starve themselves MUST be force-fed: Liz Jones backs the judge who ruled an anorexic girl must be kept alive against her will – By Liz Jones

    http://www.dailymail.co.uk/femail/article-2162287/Why-women-starve-MUST-force-fed.html

    • Leeza Gandley says:

      I’d like to add:
      First, Anorexia isn’t about vanity. It’s a complex illness that has existed far longer than the warped Western ideals of thinness. Second, the author of that DailyMail article was always able to maintain her autonomy. She was never force-fed. Research shows that forced treatment rarely works — and forced refeeding is often so traumatic that it reinforces the pathology it is purportedly applied to treat. Third, medical stabilization, refeedin and weight restoration are NOT CURES! The pathology in Anorexia Nervosa is mental in origin. The voice within; the toxic thoughts — they remain even at restored weights. This woman has been forcibly put through the same treatment 10 TIMES to no benefit! I hardly see the merit — and I see MAJOR error — in forcing this woman to endure the brutal, painful, violently invasive treatment yet again. LET HER CHOOSE WHEN ENOUGH IS ENOUGH!

  • Khalid Jan says:

    Thanks for your comments on the DailyMail post.

    Who is the ultimate authority on Anorexia? It could very well be that the “disease-maintenace” industry, i.e, the pharmaceutical industry, turned it into a disease? Why should the Anorexics have the autonomy to end their lives, but not, let’s say, Schizophrenics, OCD and PTSD patients? All are mental illnesses. Or can we be selective about it? If so, why?

    “Thus, Brumberg demonstrates, “today’s anoretic is one of a long line of women and girls who have used control of appetite, food and the body as a focus of their symbolic language.” In its modern form, the disease seems to be on the increase, afflicting as many as a million young women and girls in the United States. The reasons for this upsurge are complex and not entirely clear, but Brumberg relates them to the anthropological theory that “rapid social change and disintegrating social boundaries stimulate both greater external and greater internal control of the physical body. In short, disorder in the body politic has implications for the individual body…Moreover, although anorexia nervosa strikes young women almost exclusively, it is not an isolated illness but reflects wider social pathology: “In effect, capitalism seems to generate a peculiar set of human difficulties that might well be characterized as consumption disorders rather than strictly eating disorders.”

    http://articles.latimes.com/1989-12-24/books/bk-1918_1_anorexia-nervosa

  • Khalid Jan says:

    “The Americanization of Mental Illness” by Ethan Watters
    The New York Times, Jan 8, 2010

    http://www.nytimes.com/2010/01/10/magazine/10psyche-t.html

  • Charles Foster says:

    Anthony: many thanks. I agree, the LA’s role isn’t clear. It rather sounds as if everyone was at the end of their tether and that it could have been anyone who got in first with the application to the court, essentially reading: ‘Help: sort this out for us’.

  • Dinn says:

    I am sickened to the core, thinking of what this woman has endured and now must endure yet again

    • Leeza Gandley says:

      @Khalid Jan:
      Thank you for your continued interest in this subject and sharing your thoughts here as well. :)
      As for the ultimate authority on anorexia nervosa (AN), there have been many noteworthy researchers who have greatly added to our knowledge of this complex, multifaceted illness. Steven Levenkron is widely accepted as the premiere expert in AN psychotherapy. Dr. Levenkron has unique insight because he has worked with many long-term sufferers since the 1970′s. He is still in practice in New York.
      Every case of AN is unique and there are many approaches to therapy.
      I personally believe the Right To Die should be upheld for ALL persons with intractable suffering who have been through the gauntlet of all available contemporary, alternative and integrative medicine have to offer and have not benefited to any significant degree. What no one is talking about is this woman’s quality of Life! This is a huge issue in people with long-term chronic illness, be it mental or physical — or both. The Right To Die issue is a much bigger and more far-reaching debate, however, so I will adhere to the subject of Anorexia Nervosa and mental illness in general.
      AN is most concerning and problematic for several reasons:
      1. It is the most fatal of mental illnesses — one in 5 lose their Lives to the disease.
      2. Recovery statistics are very poor — even with the best treatment (access to treatment is another problematic issue due to lack of health care insurance coverage/resources for the mentally ill).
      3. There is poor efficacy in the treatment of AN — only 25-40% ever recover (and there is debate in academic circles regarding whether it is even possible to achieve the “recovered” endpoint. The most widely accepted opinion is that AN isn’t curable. It may be manageable, as with any chronic illness, but overall the results are saddening.
      4. There is to date no standardized treatment for AN. In illnesses like schizophrenia, OCD, PTSD, etc., there are many medications and therapies which show statistically significant utility and efficacy in increasing quality-of-Life and decreasing the impact of the underlying pathology.
      In general, I agree fully with the issue of Big Pharma and the ‘disease maintenance’ phenomenon — a troubling issue to be sure; one that disturbs me to the core of my being. For AN, though, because no single drug has ever been proven significantly efficacious and therefore never approved for marketing/labeling to treat anorectics, the motive to medicalize non-pathology is simply lacking there. There is no product to peddle to sufferers.
      5. AN has existed long before the problematic Western beauty standard, and before Big Pharma. The disease has been described throughout history. Also, 20% of anorectics are male — suggesting that this goes much deeper than Western societal veneration of thinness in women.

      • Khalid Jan says:

        Leeza, thanks again for additional thoughts and reflections. Anorexia, and almost all other illnesses and diseases, have extremely complex social, environmental and biological causes. In the case of anorexia, there is no uniform consensus on the exact nature of its causes:

        “There is no single cause for eating disorders. Although concerns about weight and body shape play a role in all eating disorders, the actual cause of these disorders appear to result from many factors, including those that are genetic and neurobiologic, cultural and social, and behavioral and psychologic.”

        Review Date: 2/8/2012
        Reviewed By: David B. Merrill, MD, Assistant Clinical Professor of Psychiatry, Department of Psychiatry, Columbia University Medical Center, New York, NY. Also reviewed by Harvey Simon, MD, Editor-in-Chief, Associate Professor of Medicine, Harvard Medical School; Physician, Massachusetts General Hospital; and David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.

        Source: http://health.nytimes.com/health/guides/disease/anorexia-nervosa/causes.html

        Yes, evidence does suggest that anorexia existed in the past. But does it prove that its cause was either social or neurobiological or both? Could it be that the social component influenced the Brain’s neuroplasticity, and as a result, the Brain formed new pathways that lead to anorexic behavior – past and present both? As for other ‘mental illnesses,’ the availability of treatments and medications is one thing, and the quality of the lives of the sufferers is totally another matter: we should be consistent in our judgments.

        Knowing the essence of things or even coming to terms with reality is very scary: because upon knowing, we have to throw away our beliefs, our opinions, our ideas, our perceptions, our upbringing, and so on: this horrible thought of divorcing ourselves from these acquired attitudes, which we dearly cherish, is what leads us to ignore the elemental causes of some illnesses or diseases that could very well be of our own making.

        We need calmness of the mind, along with wisdom and knowledge when dealing with patients who are going through such illnesses. To suggest that a human being’s life, due to some form of illnesses, must be ended at a certain point in time is to acknowledge that we only value the fittest.

        • Leeza Gandley says:

          Khalid Jan says:
          June 24, 2012 at 4:35 am

          “Leeza, thanks again for additional thoughts and reflections. Anorexia, and almost all other illnesses and diseases, have extremely complex social, environmental and biological causes. In the case of anorexia, there is no uniform consensus on the exact nature of its causes:

          There is no single cause for eating disorders. Although concerns about weight and body shape play a role in all eating disorders, the actual cause of these disorders appear to result from many factors, including those that are genetic and neurobiologic, cultural and social, and behavioral and psychologic.

          Review Date: 2/8/2012
          Reviewed By: David B. Merrill, MD, Assistant Clinical Professor of Psychiatry, Department of Psychiatry, Columbia University Medical Center, New York, NY. Also reviewed by Harvey Simon, MD, Editor-in-Chief, Associate Professor of Medicine, Harvard Medical School; Physician, Massachusetts General Hospital; and David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.

          Source: http://health.nytimes.com/health/guides/disease/anorexia-nervosa/causes.html

          Hello again, Khalid! :)

          Oh yes — there are definitely a combination of factors at work in the manifestation of ED’s. As the article you referenced states, the cause is best represented by a 3-part model. A commonly accepted analogy is the Loaded Gun Triad: 1. Biological predisposition (genetics; intrinsic sensitivity) is the gun; 2. Societal influences and developmental personality in response to environment load the gun; and then 3. Some trigger — a trauma, for example — fires that gun. Steven Levenkron discusses this in-depth in his book, “Anatomy Of Anorexia.”
          I was wrong in using the word ‘orgin’ when referring to the persistence of mental pathology independent of weight restoration/medical stabilization. These are, for the vast majority of those suffering, Life-long illnesses that persist long after the physiological aberrations have been corrected.

          “Yes, evidence does suggest that anorexia existed in the past. But does it prove that its cause was either social or neurobiological or both? Could it be that the social component influenced the Brain’s neuroplasticity, and as a result, the Brain formed new pathways that lead to anorexic behavior – past and present both?”
          I definitely think social components are a factor, but we do see evidence of ED’s developing in the absence of social pressures; beauty standards; etc.; before thinness was regarded as ‘ideal’. ED’s are at their heart an aberrant coping mechanism; not immaturity or vanity. That was my point. In other words, I do not believe that Western culture is responsible for ED’s. Is it a factor for individuals Living in Westernized Cultures? Absolutely — but ED’s have (and still do) develop independent of these influences — across all Nations, races, socioeconomic backgrounds and other factors via environmental influence.
          Hilde Bruch’s belief that it anorexia nervosa is a disease of privilege; that only white, upper-class, young females develop AN (as written about extensively in “The Golden Cage” and Bruch’s other published works — “The Golden Cage is the most well-known though) has been disproven, though it remains a common belief in public opinion.

          Another thing I’d like to mention, which relates to the social impact question: There is currently a lot of debate regarding whether ED’s are on the increase, and that this increase is proportionate to the spread of Western culture. I personally believe that two things are going on here — 1) that this culture shift can definitely be a factor; but also that 2) widespread media and social attention to the illnesses has raised ED Awareness and given many sufferers a voice. More are speaking out than ever before. ED’s are very often experienced as an “Inadequacy Consciousness,” and speaking about/admitting/seeking support for one’s ED when the maladaptive behaviors lose efficacy and become overtly damaging is something many sufferers, if not all, struggle with. Awareness has helped many more than ever before find the courage to come forward.

          “As for other ‘mental illnesses,’ the availability of treatments and medications is one thing, and the quality of the lives of the sufferers is totally another matter: we should be consistent in our judgments.”

          I apologize if I ran those two thoughts ran together. I meant to add the Quality Of Life question as another important factor regarding this case.

          Regarding the availability of treatment — my intent with mentioning this was in response to your postulation that Big Pharma could have a motive in medicalizing non-pathology to create a market for a certain drug (or drugs). In AN that would not be the case because there are no medications currently indicated for the treatment of AN.

          “Knowing the essence of things or even coming to terms with reality is very scary: because upon knowing, we have to throw away our beliefs, our opinions, our ideas, our perceptions, our upbringing, and so on: this horrible thought of divorcing ourselves from these acquired attitudes, which we dearly cherish, is what leads us to ignore the elemental causes of some illnesses or diseases that could very well be of our own making.”

          I agree. It would be willfully ignorant to suggest zero culpability in terms of sociocultural influences.

          “To suggest that a human being’s life, due to some form of illnesses, must be ended at a certain point in time is to acknowledge that we only value the fittest.”

          I fully agree on this point! I am in no way saying that this woman’s Life ‘must be ended at a certain point in time’ — but the current treatment plan with respect to her history is highly flawed in my opinion. Not forcing refeeding is not equal to killing, to me. Palliative care at some point is the kinder thing in my opinion. Is allowing a patient to refuse treatment tantamount to killing? I don’t think so, personally.
          Obviously, a standardized policy on all cases would be inappropriate, but in this case I think this poor woman has suffered enough — and ten previous institutionalizations, including regular refeedings against her will, with no net lasting benefit — and added trauma as a result — ought to precipitate questions about the utility, ethics and appropriateness of an 11th.

          At what point do we supercede the valuing of Life and enter the realm of protracted cruelty? Again…this gets into the Right To Die issue…

          Thank you again for sharing your thoughts and considering mine!

          ~leeza

          • Khalid Jan says:

            Leeza, once again, thank you so much for such a wonderful and enlightened reflections on the topic. I believe, we have somewhat familiarized ourselves with some of the underlying causes that lead to anorexia. At this point, if you so wish, we can discuss autonomy in general.

            kj…

            • Leeza Gandley says:

              “Khalid Jan says:
              June 25, 2012 at 1:01 am
              Leeza, once again, thank you so much for such a wonderful and enlightened reflections on the topic. I believe, we have somewhat familiarized ourselves with some of the underlying causes that lead to anorexia. At this point, if you so wish, we can discuss autonomy in general.

              kj…”

              I would love to! :) What are your thoughts on this issue?

  • Tom Head says:

    (a) The five most important words in this piece, for me, are “[t]he patient is not capacitous.” While I probably would have made the same decision J made under these circumstances given the acute issues the patient faces, the existence of a living will clearly stating that she did not wish to be force-fed would be enough to overrule that decision. The phrase “[a]utonomy is a victim of anorexia” is particularly chilling because, while autonomy can’t be literally victimized, people can be literally victimized by being deprived of their autonomy; we can’t ever legitimately say that anorexia mitigates autonomy except to the degree that we are prepared to grant the same status to other mitigators such as depression, anxiety, and so on and so forth.

    (b) The physicians in question have a moral responsibility to use the least torturous means of force-feeding available, which in this case would be, I think, a peg tube. Under no circumstances should an NG tube be used.

    (c) There are various value-statements made about prognoses, none of which explicate the specific goals of this procedure. If the objective is to prevent her immediate death and give her time to become capacitous so that she can decide whether she wants to live absent the acute issues, that may be achievable; if the objective is to “cure” her anorexia, or to achieve any other long-term goals with which she is unlikely to agree, we cross the line into paternalism.

    • Tom Head says:

      Apologies; I’d misread this section from the initial paragraph:

      “Twice she has executed advance decisions refusing life-saving or life-prolonging treatment. There are only two options: death or the violation of her autonomy.”

      If she already executed an advance directive refusing this procedure while she was still capacitous, the decision has already been made. The physician is in no more of a position to intervene than a stranger, threatening the physician at gunpoint, would be.

      • Leeza Gandley says:

        In response to Tom Head:

        Apologies; I’d misread this section from the initial paragraph:

        “Twice she has executed advance decisions refusing life-saving or life-prolonging treatment. There are only two options: death or the violation of her autonomy.”

        If she already executed an advance directive refusing this procedure while she was still capacitous, the decision has already been made. The physician is in no more of a position to intervene than a stranger, threatening the physician at gunpoint, would be.”:

        Agreed in full!

        • Tom Head says:

          Thank you! I appreciate your posts in this thread, by the way; your first message articulated the stakes very well, and I doubt I would have recognized the importance of this discussion had you not written it.

          • Leeza Gandley says:

            @Tom Head:

            “Thank you! I appreciate your posts in this thread, by the way; your first message articulated the stakes very well, and I doubt I would have recognized the importance of this discussion had you not written it.”

            You’re welcome, and thank YOU for appreciating my message! I am glad someone found something noteworthy in there. :)

  • Richard B says:

    I am horrified by much of what has been said here. Leeza – you make very free with words you do not understand. I have a rough idea of what your starting point is, but these are not adult thoughts, they are flamboyant, easy-to-declaim empty words that you should consider far more carefully.

    Because they are not true.

    And I speak as someone who has had a very long-term eating disorder, a deep revulsion from food, which has done a great deal to wreck many good things in my life for more than fifteen years. I have had many years in which I truly did not care whether I lived or died.

    Nothing external worked. Not drugs, not therapy. (I had loads of both, year after messy year, and would recommend neither.) Just time.

    If you rob yourself, or anyone else, of time, if you get into twitchy, impatient, nothing-works-right-now!!! idiocy, then you are a short-sighted fool. With a bad tantrum problem.

    Nothing can replace all those many lost years of my life, and I cannot be at all sure that they are over, or that they won’t continue. There is no magic. Life really is a bastard. No rescue. But your position, and it is sadly stupidly common, boils down to a wild squeak of “Well, if there is no magic, and life is a bastard, and nobody will rescue me, then I might as well be dead!”

    The problem with being dead is that you don’t even give time a chance to work. Maybe it will, maybe it won’t. Maybe it will all get worse, far worse. That is very possible.

    That does not mean that you might as well be dead.

    • Tom Head says:

      Richard —

      When I first read this blog post, my reaction was “no matter what position anyone takes on this, it warrants vicious criticism.” I feel like this is a case where the very presence and exercise of power offends our concept of human autonomy, no matter how that power is used.

      Leeza’s thoughts are adult thoughts, just as yours are. I find yours more interesting in some ways because you’re connecting what you say to your personal experience, but if she did not say what she said, the absence of that perspective from this discussion would have been palpable.

    • Leeza Gandley says:

      @Richard B. (continued):
      Further, your statement implying that I am engaging in “twitchy, impatient, nothing-works-right-now!!! idiocy,” (and am thus a “short-sighted fool”) does not accurately depict my sentiments. This isn’t a “nothing works right now” situation. This woman has suffered for years and has already been forced to endure this same treatment against her will TEN TIMES. If the approach is more of the same, when is enough, enough? How do we justify the trauma of this treatment again? At what point can we say that the status quo isn’t helping — especially with the knowledge that this patient is suffering reinforced pathology due to the trauma and invasive nature of forced feedings and her history of sexual abuse? When considering the scope and impact of repeating any treatment, the history and outcomes of past incidences appears not to have received adequate consideration. At what point does potential benefit versus lack of efficacy of past treatments supercede the merit in another round of the same?

  • Leeza Gandley says:

    Richard B:
    I would appreciate it if you would refrain from name calling and hostility.
    As for personal experience, I have been Living with AN for 19 years (stable for quite some time) and also researching/working with individuals with AN and related ED’s for over a decade. I’m 37 by the way. I know the horrors of this illness intimately and also have a history of sexual abuse, so yes, I do have insight into what I am speaking about. I have seen friends recover and do well, and so I support the utility of AN treatment — but as a Patient Advocate I have also worked with individuals who have been forced over and over into treatments which reinforce their ED and do not benefit the sufferer. I’ve spoken to countless individuals still immersed in pathology and encourage them to keep fighting. While clearly I havhe a lot of passion with respect to this issue, I have also provided clinical insight from research — not just a mindless ‘tantrum” with no substantial information. Of course, it is your prerogative to disagree, but since personal experience entered the discussion I am contributing mine.

    • Tom Head says:

      While I’m sure this was not Richard’s intent, describing a woman’s position on something as a “tantrum” is dogwhistle misogyny. Your position is obviously well-informed and well-articulated, and however much one might agree or disagree with it, it is unreasonable to characterize it as a tantrum.

  • K Harrison says:

    Wow, that’s tough. What is never mentioned is the effect of starvation on brain function, and ability to make decisions in one’s own best interest. Comment (b) gets closest to this, by saying that the patient’s mental state improves significantly when her BMI increases. While Leeza’s reaction is understandable, I’m not sure the chemo analogy is appropriate. Would we be just as adamant that a drunk person be allowed to commit suicide because that’s what she says she wants while under the influence? Is a person in an altered state of mind actually acting out her “will,” or do we consider the person’s “actual” will best represented by what she wants when she is of “sound mind?” Starvation takes people out of their “sound mind” and puts them in a state of compromised cognitive capacity. A great deal of research outside the realm of eating disorders (e.g., military experiments testing the effects of forced starvation on mental and physical deterioration) supports this. So while forced feeding on the surface seems barbaric and invasive in the extreme, if it is done to return the patient to her “true” state of mind, whatever that is, I can see the ethical pull toward doing all that is possible to return her to that point. (FYI, I have been studying disordered eating as a researcher for almost 20 years, but I do not work with eating disorders in a clinical capacity.)

    • K Harrison says:

      (Adding: the well known starvation experiment headed by Ancel Keys describes effects on men’s mental state and behavior, including depression, obsessive behavior, self-harm, etc. Makes me wonder how much of the 32-year-old woman’s personality disorder was just the manifestation of protracted starvation.) Here’s a link to the wikipedia summary of the study.

      http://en.wikipedia.org/wiki/Minnesota_Starvation_Experiment

      • Leeza Gandley says:

        @K Harrison:

        Thank you for joining this discussion! Excellent point RE: the physiological starvation state altering neurochemistry and the subsequent manifestation of many obsessive sequelae even in non-ED sufferers.
        It is true that an AN patient who is stabilized medically before psychotherapy begins often have better treatment outcomes. In general, once an anorexia nervosa sufferer is stabilized, the patient’s ability to benefit from psychotherapy greatly improves. The difference between ED sufferers and POW’s, etc., however, is that once a non-ED sufferer is restored nutritionally, the OCD-like behaviors invoked by starvation typically resolve entirely. In an ED patient, the intrinsic psychopathology almost exclusively remains post-refeeding, and psychotherapeutic intervention is necessary for improvement of mental health.
        I think the distinction we must make in this case is that this woman has received a wide spectrum of both medical and psychotherapeutic interventions — many, many times. Even when the altered neurochemical state of starvation is corrected, therapeutic intervention has failed to provide any lasting benefit to this patient.

        Regarding my euthanasia analogy, I have encountered this and other analogies from many sufferers — watching TPN come down their IV line is met with an intense dread; as if the contents are poison. Even a solution of low-concentratiom glucose (D5W for example) may evoke abject terror. We are talking about the delusions in AN sufferers — something you have likely encountered in your work, as well — fear of showering because the patient is convinced that water has calories and s/he is terrified of absorbing them through the skin is another example. In overt, long-standing anorexia nervosa, many intense fears regarding nourishment do manifest.

        • Leeza Gandley says:

          @K Harrison (continued):

          Regarding the chemo analogy: A cancer patient has the right to refuse treatment and/or when to stop it. We know that chemotherapy is a brutal experience for the majority, if not all patients, and while those who decide to refuse repeated treatment do not explicitly *want* to die, the opportunity cost of low-potential positive outcome does not significantly outweigh the protracted period of serious suffering that such treatment entails. It is generally considered acceptable for such patients to recognize that not enduring such treatment means they will almost certainly die, and yet still refuse to endure another round of treatment.

          In this case, the judge’s decision appears to be based on the argument that the patient is a) young; and b) that she *could* benefit from yet another round of forced treatment/refeeding because there is a “not negligible” chance that it might work. I understand that the neurochemical effects of starvation can alter cognition and rationale, etc., but the patient filed DNR advance directives TWICE when she was in a better state mentally — so in my mind that negates the lack of capacitance argument.
          How, apart from the capacity issue, are the two scenarios (long-term anorexia patient versus cancer patient and the decision to reject another course of treatment due to the rigors of enduring such treatment and the low probability of benefit thereof) different?

    • Gwyneth Olwyn says:

      Further to @kharrison’s observation (as per all the data supported by Ancel Keys’ Minnesota Starvation Experiment), from a medical perspective there are no ethical conundrums associated for treatment of a patient in the event of possible trauma to the brain.

      I too work with those with restrictive eating disorders and have had very interesting philosophical discussions on the so-called ethical conundrum of feeding a patient against her will. These ethical conundrums do not exist for paramedics when a patient has suffered blunt force trauma to the head and yet insists that she is fine and does not need to go to hospital. The same is true for treatment of the same patient within the ER as well. The same is also true for mildly hypoxic asthmatic patients who are highly agitated and appear to be suffering an anxiety attack. The same is true for diabetic patients who are combative and angry and insist they have no need of treatment.

      The brain is exquisitely ill equipped for identifying its own impairments (hence all the public service announcement urging individuals to make their safe transportation plans well ahead of actually being out-on-the-town and drunk). There are no pain sensors within it and when the centre of analysis is down (due to lack of oxygen or glucose or what have you) then there is no off-site back-up to use for a reboot of any kind. In fact we must depend upon nearby unimpaired external brains to right the system, or all is lost.

      So the real issue is why starvation is still not identified as another form of trauma to the brain despite all the evidence we already have.

      • Tom Head says:

        My understanding of this situation is that the patient had already executed an order to withhold force-feeding in the event that this happened again. The argument could be made that she has been starving for years and is not entitled to make her own medical decisions, but the blog entry does not suggest that anyone made that argument.

  • - says:

    And I am thinking (keeping in mind: “As well as the anorexic’s usual horror of calories, the forcible medical administration of nutrition reminds her horribly of the sexual abuse she suffered as a child.”), how therapeutic indeed is court decision. Yes, it may save her life today, but what about tomorrow? Will it be not running in circles? I had the same BMI as this woman, left hospital on my own demand (not without struggle, but…), as you can see am obviously alive, keeping around 20 BMI for maybe 15 years now – not saying it automatically follows or is wise thing to do, but is an option.

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