Honoring Client’s Self Determination: The Case of “A.G.”

Monte Nido & Affiliates Adolescent Treatment Program, Clementine Briarcliff Manor Clinical Director Danielle Small, MS, LMFT is an eating disorder expert who is dedicated to helping clients learn to accept their bodies and embrace their spirit while also connecting to their intellectual curiosity. In this week’s post, Danielle dives into the idea of treating clients who are resistant to care and touches on a recent legal ruling involving a woman suffering with Anorexia Nervosa. Read on to get Danielle’s insight into the topic…

Often in our work we encounter clients who are resistant to care.  They may only be in treatment due to boundaries held by loved ones and therefore may not be emotionally connected to letting go of their eating disorders on their own accord.  In these cases, we often speak of “meeting the client where they are at”; encouraging them to work on those aspects of themselves that they feel safe challenging, while we in turn build a case for full surrender to the treatment process.  Some of these clients eventually catch a glimpse of the value of letting go of their eating disorder and tolerating the unknown in order to live a different type of life.  Unfortunately, others don’t see the eating disorder as the problem, but instead the solution to managing whatever stressors they face.  So the question then is, when do we honor a client’s self-determination?  With the medical complications inherent to eating disorders, this can be a complex clinical question, fraught with legal and ethical concerns.

The idea of self-determination is central to the case of “A.G.”, a twenty-nine year old New Jersey woman suffering from Anorexia.  In November of 2016, A.G. was granted the right to refuse a feeding tube and instead she received palliative care.  On Monday, February 20th, 2017 A.G. died.  Her guardians and treatment team ultimately supported her decision to refuse medical help due to the toll forced-feeding and restraints would have taken on her body.  The judge in this case described A.G’s testimony as “forthright, responsive, knowing, intelligent, voluntary, steadfast and credible.”[1] This is not surprising, as many of our clients are incredibly bright, intuitive and capable individuals.  However, due to the often ego-syntonic nature of their disorders, they are not able to see past their own truth.

This post does not seek to argue politics or make judgments on the cultural implications of such a ruling.  It simply begs the question, how do we respond to resistance when it may be both final and fatal?  In cases where an individual is diagnosed with Alzheimer’s, Cancer or Parkinson’s, one would assume that the disease is seen as the enemy, not the friend.  Choosing to surrender to death is often connected to inevitable decline, financial hardship and the pain of invasive treatments.  If an individual were given an opportunity to heal, that opportunity most likely would be seized.  Yet with eating disorders the opportunity is often cast aside due to debilitating anxiety and fear, not to mention the discomfort of tolerating a body that feels like a betrayal.  How do we know as professionals when to let go and allow a client to walk their own path?  Do we advise the family to permit the client to connect to their healthy selves in their own time, or do we intervene regardless of a client’s wishes?

The standard in determining a client’s capacity is to assess the following[2]:

  1. Can the client communicate their choice?
  2. Can they understand the information relevant to making this choice?
  3. Do they appreciate the consequences of this decision?
  4. Can the client process this information rationally and in a way that is consistent with the client’s long-standing desires?

Many clients have no issues with points one and two.  However discerning whether a client is rationally processing the consequences of refusing care is the tricky part.

In A.G.’s case the court did not see the impact of the disorder on her cognitive functioning.  The judge saw an intelligent woman making a well-informed argument that further intervention would bring unnecessary pain and suffering. Clearly it was determined that the consequences were understood and consistent with A.G.’s well-established wishes.

I can’t speak from the perspective of a judge, but as a clinician, I aim to go beyond the standard assessment.  I certainly want to use all the empirically tested tools available to me, but I also want to connect to the essence of the individual; look into their eyes, hear their words and witness their suffering, whether that suffering comes from their eating disorder or the work of letting go of it.  I want to sit and process with those that love them, and for better or worse, have taken the journey with them.  I ultimately want to try to glimpse their soul self and tune into an intuition that cannot be labeled or quantified.  Only then can I make a determination on how I might chose to act if tasked with supporting or denying a client’s self-determination.

References:

(2) Appelbaum, P. S., & Grisso, T. (1988). Assessing patients’ capacities to consent to treatment. New England Journal of Medicine,1635-1638.

(1) Kauffman, E. (2017, February 22). Eating disorder leads to court case, woman’s death. Retrieved March 06, 2017, from http://www.cnn.com/2017/02/22/health/right-to-die-anorexic-woman-dies/

(2) Schmidt, S. (2016, November 22). Anorexic woman weighing 69 pounds has a right to starve, court rules. Retrieved March 06, 2017, from https://www.washingtonpost.com/news/morning-mix/wp/2016/11/22/anorexic-woman-weighing-69-pounds-has-a-right-to-starve-court-rules/?utm_term=.99472d847442

 

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