Okay, hell, it's raining, I'm at work despite my cold, and there's really nothing to do but eat soup and answer the telephone.
So I'm hearing you say, I think, that by drawing attention to the lack of a concrete explanation of how it is known that Katie can't understand menstruation or make choices about her medical care, I'm being unfair to her parents. I understand and respect your position. I believe you are probably right that her parents are doing all they can to make sure she has representation, to include her in the decision as appropriately as they are able, and to assess how much she can understand to the best of their ability. They're acting responsibly, in my opinion, by stressing that this is a decision they think is appropriate in this specific case, not one they think is appropriate in the case of every young female with a range of disability. In any case I see like this, I am concerned that perhaps not enough has been done to facilitate communication with the disabled person, to involve them in their own care. I don't think it's a matter of all or nothing as you've framed it, here, Haus:
am I right in thinking that you are saying that, in the absence of a specific accounting of the efforts that have been made to communicate with the child, one must assume that the efforts have not been made ... and therefore that one must work on the assumption that the parents are seeking to have the operation performed without having made any efforts to communicate with her except where those efforts have been recorded,
I think what I'm getting at is that without some kind of recorded assessment, it's very difficult to know several things:
1) To what degree is the disabled person able to understand and make decisions? This is not an all or nothing proposition.
2) To what level of certainty has this been established?
3) If there is any ability to understand and make choices, how has communication been established? How much nuance can this communication form convey? Can only the most intimately familiar caregivers understand the communication or would it be intelligible to someone unfamiliar with a reasonable orientation?
4) Finally, if there is comprehension and communication, what are the expressed wishes of the person, and to what extent can they be understood and implemented?
Without any of this information, it seems reasonable to me to wonder. If this information is available, why wasn't some reference to it in the article? To omit it has worrying consequences for the readers, for Katie and her family, and potentially for other people in similar circumstances. We have already discussed the Telegraph's motives for not including it to some extent, but I haven't really seen it covered anywhere. There is a great deal more grey area than you've allowed for, Haus.
I think there is an understandable and necessary tension between questioning the assignment of cognitive impairment to children with speech and motor impairments, and protecting the ability of their parents and caregivers to make positive decisions that affect their health. Some of this questioning is happening on the internet by armchair ethicists, because an important part of what's going on here is that it's raising the profile of cases like these. The internet is one place where people who are thinking about these issues are discussing their reactions to it. I think that's a positive thing in general, because by raising awareness it may help uncover cases in which thinking and feeling people with speech and motor impairments are treated as inanimate objects. I also recognize that it has negative effects on people's privacy.
As far as why a 14-year-old's wishes should be concerned, irrespective of any cognitive impairment--if this were lifesaving, or significantly reduced some risk to her health, I would say that an assessment of her needs by an outside professional might very well override her wishes. But it's being done for her comfort. If it's being done for her comfort, her wishes are indeed substantially concerned. This is a decision between: a) surgery with around six weeks of painful recovery time and possibly a greater risk of osteoporosis unless counteracted by hormone therapy for the rest of her life, and higher risk of cardiovascular disease regardless of hormone treatments; and b) regular or possibly irregular menstruation with bleeding and potential pain, perhaps with some risk of infections due to hygiene challenges. I'm sure these are concerns her parents and her doctors are weighing very carefully, but since it's not a clear-cut decision, if Katie has an opinion on this, it should be taken into account. One day she will be an adult and may well prefer to deal with menstruation than with the risk of osteoporosis, which is very serious in people with mobility impairments.
Not in every case will a young person with speech and motor impairment have caregivers, even parents, who are willing or able to accurately assess how much they can understand and choose. I am willing to take the risk of asserting that some third party with wide-ranging experience in assessing level of cognition in people who cannot communicate should be involved in every case where a major decision is being made on behalf of someone who is believed not to be able to choose for themselves. I understand this will result in some unfairness to parents who are doing a good job of this already.
As I see it, there's a bit of balancing going on. We know we're limited in our ability to understand people who have full cognitive abilities but can't use speech or writing or communication boards. For one thing there's a learning curve involved, just like there is in learning to speak and write, and there's the risk of misassessment no matter what efforts are made. That doesn't invalidate the necessity of making every effort. I think that protecting people with disabilities' rights to make decisions for themselves ought to be a balance among expert medical opinion, the intimate knowledge of parents and caregivers, and judicial review, and when these disagree, the opinion that accords the most agency to the disabled person should be followed unless there's some good reason why that's impossible. I don't think that parents should have the unlimited right to make decisions for their disabled children without some kind of outside check. At the same time I think the process of reviewing their decisions should be reserved for cases where it does materially impact the health and comfort of the disabled person, including this kind of case where surgery that is not medically necessary is proposed as a means of alleviating projected discomfort.
I may have acted inappropriately in this thread, or communicated as if I believed something radically different from the above. If so, I apologize. It's my considered belief that my class bias does not play a part in the basic assertion that there is a possibility that Alison Thorpe and Peter Reynolds may not have accurately assessed Katie's ability to comprehend. I would have similar concerns were her parents both neurologists, although I suspect neurologists would have an easier time convincing me that their assessments were accurate, whether or not they actually were. Class bias may well have affected my emotional reaction or my phrasing somewhere; if so I apologize for that as well.
I probably haven't addressed all of your concerns, so please let me know what I've missed or been unclear about. I'd like to leave aside Hydra and hir behavior and Haus' reaction to it unless that's a problem for either Hydra or Haus. It seems to be confusing matters, and I apologize for having brought it up in-thread. If you're concerned, feel free to PM me. |
