The Useless Tree

Thinking More about Haleigh Poutre

    The Ragged Edge, an on-line magazine about disability issues, has a very thorough and thoughtful piece by Lisa Blumberg.  She makes a key point in comparing Haleigh and Terri Schiavo:

… the issue is not really about personal autonomy, as
last year’s Schiavo editorials would have us believe. No; the issue
really comes down to differences of opinion over whether this or that
particular life is "worth saving."

    She then goes on to ask the hard question:

My question for my fellow liberals: exactly at what point would you
join disability activists in drawing the line? Or do you just want to
let the bioethicists sort it all out?

    At this point, I think there is no one single answer to that question.  There is no one single "line" to draw.  We cannot specify an objective set of criteria that would apply to all hard cases.  Rather, each case is unique and dynamic.  That is why the general tendency to allow individuals facing such circumstances and their closest relatives to make ultimate decisions is a good practice. 

     Even with her apparent improvements, the kind of condition that Haleigh is now experiencing would, when described in detail, likely lead many people to say that, for themselves, they would rather die than be kept alive if they were in similar circumstances.  Should those kinds of judgments be ignored and overruled because we (whoever "we" are) have established an objective "line" for maintaining life support?  I think not.

    More particularly in Haleigh’s case, the state had to move quickly to gain legal control over the decision-making because if it did not Haleigh’s step-father, the person who possibly beat her into this condition, would have had the power to decide Haleigh’s fate.  He had to be taken out of the picture as soon as possible.  Moreover, the state cannot now, in light of Haleigh’s apparent improvement, ask the court to rescind its last decision – a point that Blumberg raises – because authority over Haleigh’s care would then revert back to the step-father.

   Adoption could be a good option here, to get the state out of the decision-making, but it cannot be "fast tracked," as Blumberg suggests.  Care must be taken to assure that Haleigh is not adopted by someone who will use her to make a larger point about right-to-life or right-to-die issues.  Her adoption should be motivated only by a deep commitment to her care and interests.  DSS will have to make sure it gets that right, and that will have to take some time.  The first question asked of any prospective adoptive parent should be: will you, personally, clean her tracheostomy several times a day, every day? 

    There is much humanity to be discovered in Haleigh’s current situation.  But there is also danger that she will be transformed into a cause.  At this point, time should be taken to see how she heals.  If, after a year or so, those closest to her care, whether they be state agents or adoptive parents, decide to discontinue care, we should not, automatically, assume that that is an inhumane decision.  There is no one single line that can be crossed in these sorts of hard cases.  There can only be careful and well-intentioned attention to the totality of the circumstances.

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Sam Crane
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6 responses to “Thinking More about Haleigh Poutre”

  1. The Rambling Taoist Avatar
    The Rambling Taoist

    I would say that the desire for strict and rigid rules by many is not specific to Haleigh’s situation. For me, this desire goes a long way toward explaining the popularity of religion.
    In a world where change is constant, many people crave an ediface of rigidity to lean on; to have one part of their lives that negates the constant motion.
    By and large, I find far too many people who are terrified at the prospect of having to evaluate every event or situation in terms of the unique set of circumstances before them at any given moment. It’s just so much easier to rely on set rules, regardless of whether or not they fit the uniqueness of any given situation.

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  2. MaxedOutMama Avatar
    MaxedOutMama

    Sam,
    DSS got custody completely separately and before going to court to yank life support. They went to court to get the authority to do that within two weeks, btw. So your “issue” here is a nonsensical one. The stepfather has no custody claim at all legally.
    Furthermore, DSS had something to bury – Haleigh. For three years they had been getting reports that Haleigh was being abused, although this was not widely reported in the media until after Haleigh survived the tender mercies of the MA Supreme Court. The lowest number I have seen is 15 separate reports. The highest is 20.
    Look, the biggest conflict of interest here is DSS having custody of the child. The mother, who is dead, is supposedly the person who beat this child severely and burned her. A witness reported that the mother hit the child with a baseball bat.
    The stepfather has been charged with assault, but the charges against him are relatively minor. DSS accepted the mother’s word that Haleigh was hurting herself. DSS is claiming that they investigated and found all that credible, and had psychiatrist’s reports to back it up. If that is true, the stepfather may have a very good legal case in his defense. Was he supposed to know something that DSS did not?
    Again, I’ll point out to you that the major conflict of interest here is the conflict between the people at DSS (whose careers are at stake) and the child’s life.
    DSS had something to gain in this. They got a judge to impose a gag order. Several papers have filed claims to try to get those court papers.

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  3. Sam Avatar
    Sam

    Here is what was at stake in the SJC decision (quote from 1/17 Boston Globe):
    “Though he never formally adopted the girl, he argued that as the stepfather, he should be considered a de facto parent and allowed to have a say in whether she lives or dies.”
    The stepfather was trying to establish a “de facto” parental status that would allow him to decide how to care for Haleigh. This had to be rejected because, under precisely the terms of his own argument, the stepfather had already failed miserably in his “de facto” parental role. You want to blame DSS for Haleigh’s mistreatment, but the primary responsibility lies with those who were supposed to be her parents. The stepfather, even if he did not swing the bat, should have known more about what was going on with Haleigh than DSS. He had to be removed from any decision-making role. Now, DSS did obviously fail to see how bad things were for Haleigh. So, let’s beef up their capabilities for monitoring such situations. Let’s double the number of people involved and increase their training: I’m all for it. But, at the same time, I think the stepparents must bear the primary responsibility.

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  4. Ettina Avatar
    Ettina

    “Even with her apparent improvements, the kind of condition that Haleigh is now experiencing would, when described in detail, likely lead many people to say that, for themselves, they would rather die than be kept alive if they were in similar circumstances. Should those kinds of judgments be ignored and overruled because we (whoever “we” are) have established an objective “line” for maintaining life support? I think not.”
    I don’t think we should accept people’s feeling that they would rather die than live in a certain state, at least the way our society is now. The reason why is that most people simply have no clue what it’s like. They just have their pity-filled stereotypes. As such, they are incapable of making informed consent in this situation. How many people are aware that it is impossible to accurately determine whether someone is truly in a vegetative state? You can prove they’re not, but you can’t prove they are. Secondly, assuming someone is severely disabled but not in a vegetative state, many people underestimate such a person’s capacity for happiness as well as their awareness. Some autistic self-advocates, who are/were considered severely disabled and unaware of their surroundings, have started describing how their lives really aren’t that bad. And a few who were thought to be in vegetative states have said the same sort of thing, as well as pointing out how they were aware.
    http://www.ragged-edge-mag.com/extra/wokeup.html Rus Cooper-Dowda described how she was writing in the air to protest the plans to remove her ventilator and feeding tube. The doctors interpreted that as seizures. Fortunately, some nurses figured it out. One put ink on her fingers and had her writing answers to questions on a clipboard. The doctors eventually listened after a scene in which she wrote “Divorce you” to her husband and then “Divorce him” to the nurse.

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  5. Sam Avatar
    Sam

    Ettina,
    Thank you for the comment. I agree with you that an abled person may not be capable of judging what life might be like with a disability, and that abled people may often over-estimate the loss or tragedy involved. I fully agree that disabled lives are as valuable as any other. Yet, even with all that, I think there is still room for advanced directives to guide care decisions in difficult cases. Because what might happen to those folks who, having experienced a condition like that Haleigh now finds herself in, decide that they would rather die? Should they be made to live against their will?

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  6. Joe Avatar
    Joe

    Bureaucratic Insanity (an oxymoron)
    1) Within twenty years, “curing” this most unfortunate child (Haleigh Poutre) seems quite feasible.
    2) What she needs now is what she always needed – to be protected and loved by really caring people (not be a ward of the DSS).
    3)The DSS “leadership” needs to immediately implement quality assurance procedures that brings it’s cases to commonsense review, not by continuing it’s present shady policy of burying it’s cases (along with the children) in BUREAU SPEAK – that is, outright lies anymore.
    4) I actually appreciate the difficult (and dangerous) job that the “case workers” face each and every day. They do need real support from their home office in these toughest of decisions. Support means working on one’s competence in dealing with children in crisis situations.
    5) We really do not know if Haleigh told her case worker(s), doctors, teachers about the abuse, since the records are sealed (to protect who?).

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