March 14, 2015

Severe and Enduring Hope

It may be that I'm a parent. Something inherent in the position of caregiver and loved one and family member and lifelong connection, perhaps, that makes it not only impossible but offensive when I hear terms like:

Severe and Enduring Eating Disorders.

This term, mostly used by researchers and clinicians operating in the context of national health systems around the world, is the equivalent of "We've Given Up." It is a sign that the system accepts that recovery is no longer the goal, only a sort of palliative half-life. Families and clinicians switch gears to "quality of life" instead of recovery.

Well, I am a parent and I will never give up. I don't know any parent who will, really. While there is any breath, any chance, any avenue or angle or possibility we don't and should not accept concepts like this.

Treatment may have failed the person, and there may not be any law that compels their care, and the patient may indeed be lost to anosognosia and misery right now but that is not THEIR problem it is ours. It is not their fault or choice it is ours. The responsibility is ours, as a society.

SEED is a term, and there are others like it, for when we have failed to diagnose and intervene early and well, failed to follow up, failed at relapse prevention, failed to address comorbidities, failed to recognize anosognosia, failed to account in our laws and customs and healthcare systems. But the failure is ours as a society, not the patient's. If we are to label anything it is ourselves, not the patient.

The patient may still be suffering but they do not have SEED, we have SEE failure to treat.

Thank you to Lisa at F.E.A.S.T. for her wonderful post on this topic this week. Parents see this differently.

11 comments:

  1. As the parent of someone with an enduring illness I accept the term SEED and even quite welcome it because it is agnostic as to cause. It may well mean that that four letter "f" word is part of the mix and that parents, treatment providers, society, whoever has failed, but it doesn't necessarily have to. ALL it means is that the illness has lasted longer than 7 years. It doesn't mean that the patient has failed, just that the disease is strong. It certainly shouldn't be an excuse for anyone to give up but just realistically it isn't going to be the same illness in terms of how to treat it as it is in someone who has only been unwell for a short time.

    ReplyDelete
  2. Dear Marcella, I respect that. The illness is different when someone has been ill for a longer time, no question. I also hear what you are saying that the term is agnostic to cause, and that the term can mean hope of continuing care that doesn't bang away as if things are the same for all patients at all stages. You are a wonderful example of that Enduring Hope, and engagement, that exemplifies parents, in fact. Loving and believing in our kids whereever they are and however they are is the essence of parental love. You are such a wonderful mum!

    ReplyDelete
  3. And I'm sorry for being unkind about a term you accept and welcome. Please know I dislike it for different reasons than you accept it!

    ReplyDelete
  4. No offence taken and not saying I am a fan of most of the descriptions of and (lack of) treatment for SEEDs, just that I prefer the term to, say, "treatment resistant ED" which can be misinterpreted as suggesting that the patient not the ED is resistant and implies that good treatment has been offered in the past which it may well not have.

    ReplyDelete
    Replies
    1. Egads! Are those our choices?

      "treatment resistant ED" is emphatically, monstrously, deeply wrong. SEED sure does sound better.

      Delete
    2. Wondering out loud here and will gather the courage to do so in other arenas, as to whether it would be possible or desirable to challenge the authors of such terms to justify them, or just to explain them

      Delete
    3. I actually think those using these terms are themselves trapped in a system where they are doing the best with what they've got. If you work in a system of customs and laws that leave patients and their families without early and effective interventions then you do have to find a name for what you are seeing and propose solutions in the real world. If insurance companies and health systems and laws and the eating disorder professional world took a different view to eating disorder treatment we would not have enough of those with enduring illness to categorize and create strategies. Some patients would still fall through the cracks but I truly believe this is a failure on MOST levels to act effectively.

      An infection analogy works for me here. If we intervened early with antibiotics for infections, switched to different antibiotics after an unsucessful trial period, and assured patients of a full course before stopping the treatment then we would have fewer -- not none -- severe and ongoing infections or the damage of longterm infection.

      With EDs we intervene late, weakly, then overwhelmingly, ended early, and in isolation from other concerns. And then we blame the patient. We literally build resistance, and entrench the disorder. Some patients would be impossible to reach regardless, I know, but with our specialists able to concentrate on those cases I feel sure we would do better with both the easier to treat and the more complex cases.

      Delete
  5. I guess by definition my daughter might be labeled as SEED having been ill for 8 years; however, she has made progress over time and continues to make progress. I personally feel like labeling her as having SEED is like giving up and might well make her feel like giving up. As her mother, I will never give up!! F$*# ED!

    ReplyDelete
  6. thought of this conversation when I read this http://www.b-eat.co.uk/latest/1870-seed-and-sean-acronyms-with-bite which I like but suspect may be problematic to some. So far the reaction I've seen to it has been (extremely and proper) righteous indignation against systems which don't offer early intervention but I also hope that it results in action rather than the continuous dismissal of "patients who have defied attempts at treatment". Yes, that really WAS a suggested way of describing people like my beloved eldest child.

    ReplyDelete
  7. I just don't buy the idea that it's a zero sum game. I don't see early intervention as in opposition to later and latest intervention. I think there's something inherently cruel in forming that as a thought, really: making us think that one effort pulls against the other. We should be funding and pursuing both with full force. Yes, early intervention will mean less NEED for later intervention for many, so it is related, but it's "splitting the baby" to pit them against one another.

    I also resist the idea that early intervention and later interventions are really all that different. The same principles should apply to all: food is medicine, not the patient's choice to be ill, full recovery is the goal, and treatment should be available at all levels of care at all stages of treatment, and treat co-morbid issues. Even the issue of family involvement should be nearly the same: it helps to whatever degree it is possible and helpful. NO patient, child or adult, should have to lead their own care, have insight or motivation, or reach poor medical state to access care. No care should neglect full metabolic normalization. No care should treat the symptoms as willful. All treatment should consider co-morbid issues.

    I know, I'm a dreamer.

    ReplyDelete