Mother doesn't always know best

I had a go at a proper blogpost! Fingers crossed. And before I depress you with this little dirge, Jack"O'Lantern"P has had a really good idea for later this month - we're all to write spooky stories, which we'll publish on sundown (whenever that happens to be where we are) on Halloween. Do go over and tell Jack if you're joining in.
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The mother of fifteen year-old Katie Thorpe, who is has severe Cerebral Palsy, is looking into whether or not it is legal to perform a hysterectomy on the lass in order to relieve her of the indignity associated with menstruation. The BBC News story is here; Penny has kindly collected blog responses here. Now I have to say, if this actually happens, I will eat my hat - the one with the really wide brim, the feathers and everything. Really. So actually, I don't find the case terribly interesting; of course a person should not have such a serious operation for non-medical reasons, let alone in a case where consent cannot be obtained.

What I do find interesting is attitudes towards the mother. I have massive sympathy with this lady. I think it's quite possible she may have been misled by well-meaning doctors, is going through what must be quite an ordeal to argue for this, especially in the media where she will undoubtedly be touched by criticism and, I believe, all for nothing. I'm not sure I understand why a mother in this position would quite be so anxious about the issue of menstruation, but perhaps it has become a focus of fears for the future*? Don't know, none of my business.

But what happens to her child, or any child in my society, is my business, and this is where the press coverage got a bit weird. However, to be completely fair, it got weird in exactly the same way it did over the case of Charlotte Wyatt.

Charlotte Wyatt, you'll remember, was a teeny weeny baby who was born three months prematurely. She was very poorly, and there was a question as to whether she should be resuscitated in the event of her stopping breathing. Usually, doctors and the parents would talk through and make such a decision together, but in this case relations broke down; the doctors said they wouldn't resuscitate and the parents fought this decision. This went to the courts and the judge found in favour of the doctors.

At the time, it was said that Charlotte's life was all pain and suffering and death was imminent. And yet, this was four years ago and she's still here.

Now the two cases are obviously very different. The decision not to resuscitate is often made where someone is very ill or very elderly, and usually there's very little moral ambiguity. Resuscitation can be a violent process and medicine does not have a principle objective of keeping a heart beating for as many days, hours and minutes as humanly possible; the decision not to resuscitate is usually a matter of This person is dying; there's no point trying to stop it when the inevitable happens. Many people, myself included, felt that the very wording of the judgment in Charlotte's case was more about her being disabled and therefore understood to have a poor quality of life and poor future prospects for her quality of life, rather than the belief that she had no hope of survival.

Meanwhile, it is extremely unusual in the UK to perform a hysterectomy on any young woman, let alone a child, and even then it would be only done in extreme circumstances, as a last resort.

However, what the cases do have in common is the press coverage, and people talking about the case, immediately hone in on the parents. It should be up to the parents to decide; some commentators talk as if this is an entirely private decision which should be left entirely up to the mother. Others declare that these people must be terrible parents for wanting X course of action for their children. Thing is, how we make these decisions as a society should have sod all to do with the parents; we don't allow parents to imprison their children, cease their education, marry them off or to discipline them with injuring violence. But this is different. These children are disabled.

I think there's a real danger in imagining that all parents of disabled children are or should be saints, or somehow ¨ber-parents, incapable of the humdrum human fallibilities that exist in all other parents. Some of them are going to be brilliant; the parents of disabled children I know personally or feel I know through reading blogs are superb advocates for their children. And I do have sympathy with the others; whilst it is okay for a disabled person to occasionally crack and say, "Woe is me! I wish I were normal!", we're a little unforgiving when parents say the same about their children - even in cases where their lives have become inextricably linked and where parents are disabled by proxy**.

And as a society, we're not great with these families. I don't believe we should be handing any medals out, but practical and financial help, support from employers, equipment, state care and respite provision, as well any support we can offer as family members, friends and neighbours. The parents of disabled children are not angels, so we shouldn't put them in a position where they'd need to be angels in order to survive. This is a feminist issue as well as a disability one, because women make up the vast majority of those providing unpaid care.

All that having been said, the state must intervene in certain matters which could have a dramatic effect on the welfare of a child - like whether they are going to have major organs removed. Some of this stuff is explicitly covered by law, which has nothing to do with how lovely a parent is. Where it is unclear how the law might be applied, intervention has to take into account several different perspectives. These will include;

• The child. Every effort should be made to try to ascertain a child's opinions on their own healthcare. Children cannot give proper consent (I realise in law, it's a little more complicated than that), very young and severely impaired children cannot offer any opinion whatsoever. However, every effort should be made to get some kind of gage of the child's hopes and fears directly from the child.
  
• The parent(s) or principle caregivers. They are likely to have a very good gage of their child's functional limitations and what the child is like as a person. They are important stake-holders because major decisions effecting their child are likely to effect them, but their independent interests are irrelevant (yeah, I know that's hard to define). Parents of disabled children do not necessarily have the best interests of the child at heart any more than the average parent. Indeed, disabled children are particularly vulnerable to suffering at the hands of their parents.
  
• Doctors and other healthcare workers. It is just as ridiculous, in cases where a controversy has already been established, to say that it should be up to doctors to decide. Doctors know about medicine, about diagnoses, prognoses, potential complications and so on. A doctor who knows her patient well may have great insight into their best interests, but this is not something which comes as default with expertise about a medical case.
• Medical ethicists. These are people who have studied the moral philosophy of medicine and who attempt to wrangle out difficult cases using logic. In theory. They will usually know about precedents a case can be compared to, the law and government policy. However, it may be argued that because medical ethicists inevitably reflect the particular values of a society in their decision-making, including the prejudices a society may have.
  
• Disability Advocates/ Campaigners. These are people who have massive experience of the mechanisms of disability within healthcare systems and elsewhere. They are expert in the sort of mistakes people make, and their tragic consequences, when it comes to considering the best interests of disabled people. That having said, being disabled is no authority of the inner thoughts and preferences of any other disabled person, whatever similarities between their experiences.
  
• Judges. Unlike other parties, a judge who becomes involved in such a case is obliged to hear all points of view, consider the law in which he is expert and apply it accordingly. The law is supposed to reflect the values of society. It is a judge's responsibility to act without prejudice, but they're only human.

Too many cooks? Not when it comes to life and death decisions and major stuff like giving a medically unnecessary hysterectomy to a child who can neither give or withdraw her consent. Everyone who speaks on this matter has an imperfect perspective. No decision which effects a person who cannot speak for themselves is ever going to be simple. But we don't make better decisions by assuming that through the magic of parental love, mother must always know best.


* Some folks in the blogosphere have suggested that this action is partly motivated by fears that Katie may be more vulnerable to sexual abuse if she is allowed to experience 'normal' sexual development (one argument cited in the case of Ashley X), but I haven't seen any suggestion of this from the parties involved.

** There is currently a case in the European court, where a British woman is claiming she was discriminated against at work because of her son's impairment - now that is interesting.