Saturday 3 November 2012

Anorexia Nervosa: The Ethical Dilemma of Force Feeding


Tetyana Pekar


Anorexia nervosa (AN) affects 0.1-1 percent of the population and has the highest mortality rate of any psychiatric illness1. Anorexia doesn’t discriminate against age, sexual orientation, gender, or race. Nor is it limited to Western countries or middle-class white girls. 

Occasionally, severe cases of anorexia nervosa gather media attention and a lot of controversy. At the heart of the matter is an ethical dilemma: whether and under what circumstances should patients be force-fed or allowed to starve themselves to death?

Several such cases have recently been publicized. The first case is a 32-year-old former medical student from Wales2, known only as "E." E hasn’t had solid food for more than a year and has a body mass index (BMI) of 11-12—a normal BMI is 20-25. Although she does not want to die per se, E, above all, does not want to be fed. Her chances of recovery are between 10-20 percent, according to a consulting psychiatrist and eating disorder specialist. Those who know her well—including her parents—oppose further treatment and believe she deserves the right to die with dignity. 

The second case3 is of an anorexic known as "L." L is 29-years-old, and in the last 15 years, she has spent 90 percent of her time as an in-patient. She weighs just 45 lbs. Like E, L did not express a desire to die, but stated that “her severe anorexia ‘did not allow her to eat.’ ”

Typically, such ethical dilemmas are approached by attempting to grant the competent patient’s wishes, helping the patient, and considering the interests of all involved. The situation in anorexia nervosa, however, is much more complex. 

Anorexia nervosa patients are typically not psychotic and often do not pose an imminent risk to themselves—they are generally not suicidal, and don’t express an overt desire to die, although their actions certainly lead to a slow death. They are usually competent, and quite rational, they are “just unable" to eat enough to maintain a normal weight. 

Interestingly, the High Court judges ruled differently in these two cases. In the case of E, the judge ruled that she should be force-fed, alluding to the fact that E may not, at this time, fully appreciate that we only get one chance at life. In the case of L, however, the judge concluded that although nutrition and hydration should be offered to L, staff were not permitted to use "force" to administer food, water, or medicine. 

Charlotte Green4, a 35-year-old anorexia nervosa patient who spoke to the UK newspaper The Telegraph in response to these cases, stated that the duration and severity of the illness are important factors that must be considered whenever the decision to force-feed is made. 

For Green, who has been severely sick for over a decade and spent most of that time in treatment, the prospects of recovery are grim. “I have been ill for 15 years and it only gets harder… I want to be allowed responsibility for what happens next,” Green said.

Starvation alters the way our brains function. It is conceivable that once re-fed, these patients will be thankful for the decisions made on their behalf; certainly, there are patients with anorexia nervosa who were force-fed at one point and are now recovered. But, the opposite scenario could just as easily be true: forced feeding could cause more suffering for the patient and the family, as caregiving for a patient that refuses treatment is incredibly difficult. 

What if it is too late? We cannot force patients to recover—force feeding for life is unsustainable. 

Green—who has been sick for 15 years—doesn’t want any more money wasted on treatment, wasted because she doesn’t “engage” in it. “They [the psychiatrists] can make me pretend as much as they want to—but in the end I’m only pretending,” she adds. 

Shouldn’t patients in these situations be allowed to die with dignity? What are doctors to do when patients don’t want to die, but cannot eat? Refuse to eat. How do you treat someone for whom death is a better alternative than eating?

This is the illness talking. Winning. But, if treatment for decades has failed, does it ever come to a point where clinicians and parents can say, what’s been done has been done, we can’t do any more?

An astute commentator on a Facebook page for FEAST (Families Empowered and Supporting Treatment for Eating Disorders) wrote that “the biggest ethical issue here is in the failure to treat adequately while this woman (referring to the case of L) still had hope,” adding that “there may come a point of no return in some people’s AN.” 

Some, like Laura Collins, author of Eating with Your Anorexic, believe that allowing these patients to die is akin to murder. On the same Facebook thread, Collins wrote “To hospitalize without restoring normal health, to depend on the mentally ill patient's assessment, and to believe that the real person in there 'wants' to die [is murder]. We would do better for someone in a coma. This is a basic misunderstanding of the nature of anorexia nervosa. 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 (emphasis mine).” 

Although caregivers are not required to sacrifice themselves to save someone, especially if their prospects of recovery are grim, we cannot ignore or deny the important role that strong emotional reactions may have on the physicians' and caregivers' decisions with regard to treatment. To what extent are the decisions made by the judges based on making themselves, and the treatment team, feel comfortable? 

Historically, patients with anorexia nervosa have achieved a reputation of being notoriously difficult to treat. Resistant, deceitful, manipulative, greedy, selfish, and narcissistic are just some of the words that physicians have used to describe AN patients5

Caring for a patient with AN6 can be emotionally and financially draining, and this has grave implications for how patients are treated; particularly in cases where the decision to force-feed becomes unavoidable. 

The concern is that treatment might be withheld because patients are perceived as being difficult. Hebert and Weingarten, in their analysis of the ethics of forced feeding in anorexia nervosa7, worry “that an analysis of futility that uses only abstractions such as benefits and burden may simply be a post-facto rationalization of the strong negative feelings such patients evoke in others.” 

If the patient with anorexia nervosa is deemed incompetent, then is it up to the parents and physicians—who are likely mentally exhausted from years of treatment—to decide? If, on the other hand, the patient is deemed competent, but not suicidal—with no intention to die, but no ability to do what’s necessary to survive—do we grant the patient ability to refuse food when food refusal is at the very heart of this disorder? 

Appelbaum and Rumpf, in their paper titled Civil Commitment to the Anorexic Patient8 write that “denial is such an integral part of the disorder, even many anorexics who can recite lists of adverse outcomes associated with their disorders are, at the same time, quite sure that none of these events will ever happen to them. Although these patients are not globally incompetent, they may well be incompetent to make decisions about providing themselves with basic sustenance or obtaining medical care.” Is this letting anorexia win or is it acknowledging that this deadly illness is often intractable? 

For many of these cases perhaps it is too late. But one thing is clear: in all of these cases, those in charge of treatment (or financing treatment) have failed; even just by letting their patient’s disorder get this far. To deny someone treatment—as many insurance companies do—is to fail patients; to discharge patients when they are not ready because treating them is too hard, is to fail patients. To belittle, dismiss and minimize the grave nature of this illness is to fail these patients. 

Inability to eat enough to maintain a healthy weight is at the center of this disorder and allowing patients to refuse food under the guise of autonomy is admitting the illness won. 

We can do better. We have to. We need to provide better treatment—and provide it early on, before eating disorder behaviours become engrained. We need to educate health care professionals, medical students, families and partners about this disorder, because recovery is possible and death is preventable. 

References
  1. Smink, R.E.F., van Hoeken, D. and Hoek, W.H. (2012). Epidemiology of Eating Disorders: Incidence, Prevalence and Mortality Rates. Curr Psychiatry Rep 14(4): 406-414.
  2. Anorexic medical student should be fed against her will, judge rules. (2012, June 15). Telegraph. Available online: http://www.telegraph.co.uk/health/healthnews/9334118/Anorexic-medical-student-should-be-fed-against-her-will-judge-rules.html 
  3. Anorexic woman not be force-fed, judge rules. (2012, August 24). BBC News UK. Available online: http://www.bbc.co.uk/news/uk-19369239
  4. Donnelly, L. (2012, August 5). Anorexia: ‘You can’t force me to live’. Telegraph. Available online: http://www.telegraph.co.uk/health/healthnews/9451734/Anorexia-You-cant-force-me-to-live.html
  5. Thompson-Brenner, H., Satir, D.A., Franko, D.L. and Herzog, D.B. (2012). Clinician reactions to patients with eating disorders: a review of the literature. 63(1):73-8. 
  6. Treasure, J., Murphy, T., Szumkler, G., Todd, G., Gavan, K., and Joyce, J. (2001). The experience of caregiving for severe mental illness: a comparison between anorexia nervosa and psychosis. Soc Psychiatry PsychiatrEpidemiol36(7):343-347.
  7. Hébert, P.C. and Weingarten, M.A. (1991). The ethics of forced feeding in anorexia nervosa. CMAJ 144(2):141-144.
  8. Appelbaum, P.S. and Rumpf, T. (1998). Civil commitment of the anorexic patient. Gen Hosp Psychiatry 20(4):225-230.

8 comments:

  1. good read! very interesting

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  2. In my opinion, in extreme cases the decision to force feed an individual with anorexia should not be debatable. Anorexia nervosa is a mental disorder and is often accompanied by cognitive distortions, anxiety, and denial. For example, a common cognitive distortion is equating a low body weight with self-worth and success. Thus, the statement that people with anorexia are not suicidal or psychotic is a weak argument; these individuals’ thoughts are clearly misguided and as a result, in severe cases they should be force fed and given therapy. However, treating the physical aspects of this condition will not lead to improvement unless the mental components (i.e., the core of this disorder) are addressed as well.

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    1. Hi Anon, thanks for your comment!

      Regarding this: "Thus, the statement that people with anorexia are not suicidal or psychotic is a weak argument; these individuals’ thoughts are clearly misguided and as a result, in severe cases they should be force fed and given therapy."

      I don't think there's a question that this should be done when an individual first gets ill. But, what do we do when someone has been ill for 20-30 years? Spending 80-90% of their life in treatment? I'm not talking about the economic costs of that, that's a debate for another time. I mean, what then? Repeat what's been done nth times before? Maybe, but maybe not. I don't have an answer, I just wanted to illustrate the complexity of the problem. It is difficult, often, to assess the mental capabilities of someone in that position with regard to making decisions about their life. They are usually not psychotic, but, clearly, despite often not being overtly suicidal, can't do what's required of them to sustain their body. How many times can we force someone to gain weight against their will? Like I said, I really don't have an answer, and I don't think it is anything we will ever resolve, I feel.

      Tetyana

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  3. Dear Mr./Ms. Writer, thank-you for composing such a thought provoking article. It does hurt me to say that however that the writer of this article is completely biased. He/she is definitely leaning a lot more towards one side rather than looking at the AN case from an objective point of view. I would like to share a few thoughts with you and hopefully others can provide their input as-well.

    When it comes to human or animal life, we the people must rise up and do whatever it takes in order to help our brothers and sister during that troublesome time. Giving up on someone because you can not see them in pain shows that we as a species are becoming weaker and lack to courage to help others. Agreeing to do what a sick person wants elegantly showcases one's unique level of stupidity. The moment that we start to feel that others are being a burden on society and that it is best if we let them die rather than having to pay for their expensive health care treatment, is the moment that we as a species have failed.

    Only reason healthcare treatments are so expensive is because we have accepted defeat by saying "well, there's nothing we can do about the high cost of the treatments." Hell no! United we can do anything! We're the ones who put politicians in the office in the first place.

    The pharmaceutical industry is a giant trap of greed to which many people have fallen victim. If the great patriotic citizens and taxpayers of the land decide that certain health care treatments should not be copyrighted or patented, but rather should be made available to all at a reduced cost because there critical to sustaining life then who's stopping them? Get rid of those greedy politicians. Promote a culture constructed on the principles of humanity. The people North America and Europe, find it acceptable to pay disgustingly high medical costs. We deny treatment to the poor. Is there nothing that we can do as a society? To look after our own? Is money everything? Monopolists would disagree with my statements but whose asking them anyways.

    Think of those suffering from AN as patients. Patients that are helpless and don't know any better for themselves. In many respects, they're like our children. Helpless and sometimes don't know what best for them. Think of a baby; babies are helpless. There’re God's gift to mankind. Why do we look after our babies and force feed them even when they don't want to eat? Why do we ignore our children's comments sometimes on purpose and do things that are against their wishes because we know in our hearts that what we're doing is best for them? Is it maybe because we might actually love them, care for them, and want them to happy and healthy? Why shouldn’t we perceive sick individuals the same way?

    As the late Steve Jobs said, 'don't be trapped by dogma which is living with the results of other people's thinking.' We as a society have created these great legal and medical institutions. However, over time we have become complacent and have been trapped by these deadly social creations. Evolution is slow, and corrupt individuals resist change because they want to maintain their power and prestige. We should take a universal perspective. It is imperative that we try our best to help those with AN. We need to change our laws & constituents with respect to health care reforms and alter other national laws. We need to set-up a system of values where helping others is a MUST and not left in the hands of a judge a doctor or even parents. We must everything we can to help others survive.

    I would like to apologize if I may have offended anyone. However, when it comes to human life, we should always hope for the best and act in a way that gives others another chance to survive, to live, and to thrive. Ultimately, life and death is not in our hands and thinking otherwise is only a delusion and foolishness. Thank-you and have a great night!

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    1. Hi Anon,

      Thanks for your comment. I appreciate it.

      Firstly, nothing anyone writes, as much as they'll tell you otherwise, is unbiased. Yes, we all have biases. I disagree that my article is "completely" biased, but that's open to interpretation.

      I think the case with AN is challenging because the inability to eat to sustain life is at the core of this disorder. This is not the case for other diseases where cases of euthanasia often come up, such as Huntington's disease. You write "giving up on someone because you can not see them in pain," but what about the patient's perspective? What if they don't WANT to be in pain? What if THEY don't want to cause suffering to their loved ones? What if THEY don't want to live? I don't believe we have the right to make anyone live against their will.

      "Agreeing to do what a sick person wants elegantly showcases one's unique level of stupidity." Why? What about autonomy? This question is more complex in AN than in many other questions, but I'm not sure I follow why considering the person's desires is "stupid"? After all, people write advance directives such as that they do not want to be resuscitated. Is following that viewed as being "stupid" or as "respecting" their wishes?

      I'm also confused as to why you think of things in purely economic terms. I highlighted what factors may guide decision making in these complex cases, and pointed out that we need to be aware of them (ie caregiver burnout), but I do not wish to emphasize the economic stance that such patients might be a "burden on society." I think you need to think about it from the patient's perspective. What if they do not want to go through the 10th round of treatment? Terminally ill cancer patients often refuse more treatment; they know they'll die soon, and they don't want the agony and side-effects of some of the cancer treatments. We respect patient’s autonomy in such cases and we have to consider it in AN cases too. Consider, not grant automatically because AN cases are more complex.

      I make it a point that insurance companies that deny patients treatment in the early stages (or any stage, frankly) of the disease, fail patients. I don't believe in a for-profit healthcare system, and I don't view this dilemma from an economic standpoint. Not here.

      "Think of a baby; babies are helpless. There’re God's gift to mankind. Why do we look after our babies and force feed them even when they don't want to eat? Why do we ignore our children's comments sometimes on purpose and do things that are against their wishes because we know in our hearts that what we're doing is best for them? .. Why shouldn’t we perceive sick individuals the same way?"

      There is a huge difference between force feeding babies and force feeding AN patients. Babies are not cognitively mature to make decisions for themselves. Patients with AN are old enough - at least in the cases I mentioned in this article. The question of whether they are mentally competent to make decisions on their behalf is one that's, in the cases above, left to the judges. It is a tricky one. But, the examples are not comparable. A baby that denies food is not doing so out of complex and pervasive mental torment. They didn't try to eat and fail, and try, and fail, and tried, and failed.

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    2. There is a reason that we, as a society, decide when individuals can make choices for themselves. When individuals can drink, drive cars, vote, make decisions about their education, health… Aforementioned patients are well past that age when most of those permissions are granted.

      We shouldn't perceive sick individuals as being incapable of making choices for themselves, because this is quite frankly, offensive. Just because someone is sick, with say, Huntington's disease, or ALS, doesn't mean they can no longer make choices about their lives. They are adults, and as a society, we've decided that after a certain age they have the right to make decisions for themselves.

      Being sick doesn't turn someone into a helpless baby.

      However, that does NOT mean I think patients with AN should never be force fed because they are adults and that they should always be allowed to make decisions about their care. That is NOT what I think. I think all cases are different and we absolutely have to deal with this on a case by case basis, and keep in mind all the various factors that may play into the decision making (insurance, caregiver burnout, clinician burnout/frustration, years spent being sick, chances of recovery, co-morbid disorders, all sorts of things).

      I agree with you that we need to do more in terms of prevention and adequate treatment in terms of access, length and quality. My article doesn't deal with that as much as it deals with, okay, it is too late for that in some cases: now what do we do? We ended up here, what do we do? The fact that we must avoid ending up in these situations, well, that's of course the main priority, I feel. This is the sentiment that I conclude the article with.

      Again, thank you for your thoughtful comment. I hope my response cleared some things up.

      Cheers,
      Tetyana

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  4. Hi Cynthia,

    Thanks for your comment. I'm the author of this article (and not affiliated with Inquire per se). My blog (Science of Eating Disorders) can be found at www.scienceofeds.org. There, I write about peer-reviewed research on eating disorders. I wrote this piece for Inquire, so you'd have to check with them about their rules on reposting, I'm not sure about it. However, things found on my blog can be reposted *if* you credit me, and link to me. I will check your blog :)

    Glad you liked this piece!

    Cheers,
    Tetyana

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