October 15, 2007

The Right to Hysterectomy

Myra, 24, may have no idea what a uterus is, whether she has one, and why she has one. Silhouette of a womanShe is most probably unaware that the uterus is the source of the bleeding, and the accompanying cramps, that she experiences every month. She is unlikely to ever voluntarily agree to have sex with a man or become pregnant. Myra is incapable of giving an informed consent to the removal of this mysterious organ inside her, called uterus. Who has then the right to decide if it is in her interest to remove her uterus? Should the society at large, or its representative State, have any say on this matter, or is it strictly between Myra's immediate family and her doctors?

The issue is at the heart of the doctors' plea to get a British court's approval for a hysterectomy to be performed on Katie Thorpe, 15. Katie, like Myra, suffers from cerebral palsy, and probably has the same level of cognitive and physical ability as Myra does. Katie's mother, Alison Thorpe, has requested the hysterectomy, to avoid the mental confusion and suffering, most likely to result from her menstruation. If the hysterectomy were done, her mother expects Katie's quality of life to be significantly improved :

By stopping menstruation it's allowing Katie to enjoy life to the full without the problems of menstruation...the mood swings, the tears, the stomach cramps, the pain, the discomfort, the embarrassment.

Katie's doctors are expected to perform the surgery on her, if and when they obtain the court's approval.

A couple of years ago, the parents of a nine-year old girl, Ashley, from Seattle, Washington, chose to let her doctors perform a series of medical procedures to improve her quality of life, including a hysterectomy. Ashlely suffered from a severe underdevelopment of her mental and motor faculties [a condition known as “static encephalopathy of unknown etiology”]. Like Myra and Katie, she completely depended on her parents and care givers for all her day to day needs. You can read the details of the Ashley Treatment, as it is called, at the parents' informational website dedicated to describing Ashley's case. Ashley's treatment was examined and approved by a Medical Ethics Committee. A court approval was not thought necessary.

Several special interests groups — including those that advocate disability rights, such as the Not Dead Yet, Feminist Response in Disability Activism, Scope, and the Disability Rights Washington — have raised objections to medical procedures similar to the Ashley Treatment. They argue that such procedures violated the human rights of the disabled. Many of them want the government to do more [translated, $$$] for the care of the disabled, instead.

Ashley's parents have given a persuasive response to such criticisms. With particular reference to a judicial intervention in the matter, they have said:

While we support laws protecting vulnerable people against involuntary sterilization, the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s.

It's beyond reasonable doubt that Katie, Ashley, and Myra, will never be able to speak for their rights and interests. Who can best speak for them in their absence? Should a court of law be given the authority to overrule the parents — especially their mothers in these cases — and the concerned doctors?

I have stated my position on this earlier, when I wrote on the euthanasia of severely disabled babies, who could barely be kept alive with artificial life-support systems and/or financially debilitating treatment. Under these circumstances, I have contended that the parents are the second best spokespersons for those who cannot speak for themselves, subject to medical concurrence. In cases where the medical opinion is ambiguous or conflicting, the parents must have the final say.

The likes of Katie, Ashley, and Myra will most likely have a much longer life than Terry Schiavo after her stroke. What transpired in the Schiao case, however, should be an eye-opener for those who argue for the society and the government to speak for these "pillow angels". As an old Arab fable teaches us, "Beware of the camel's nose"!

7 comments :
  1. The court of law can only determine who has greater right over the medical state of a person - whether it is the doctors or the family.

    And the answer to this question should be obvious: no third-party has as much or a right to decide the right course of action for a person's well-being as the family of the person involved.

    Your post brought two related thoughts to my mind: one was the morality in emergency situations that was discussed in my "Runaway Train" post. Other was yesterday's court ruling about the Reliance brothers feud where the court clarified that it cannot engage itself in the actual financial terms of the deal.

    Rambodoc has written couple of posts about how hysterectomies are performed when they're not needed in many cases. I can't add anything more.

    ReplyDelete
  2. This was the recommendation (at least in India) for mentally retarded women in Indian remand homes or State asylums. Otherwise they could get pregnant. This is a very sick way of looking at things, IMO, and, fortunately, science has advanced such that this is not necessary any more. You can have your retarded citizens raped all the time, but protect them from pregnancy by inserting hormone-containing implants in the uterus. Works for two years. Then change. Costs a small fortune( $150). end of fantasy.

    ReplyDelete
  3. mahendra, rambodoc:
    Perhaps the title was a poor choice. Hysterectomy is of course central to the current case of Katie Thorpe, but it is not for this post. And, it is not just about rape and avoiding the consequent pregnancy either.

    The bigger question is about the likes of the Ashley Treatment - a set of medical procedures [including hysterectomy] that can be chosen by the parents to serve what they deem to be in the interest of their child. The doctors may weigh in with the risks, but who determines if the risks were worth the gains from avoiding menstruation, for example?

    Should the society, State or some other collective have a say [reflected in law] in the matter? Ashley's parents believe that obtaining a court permission - as Katie's doctors are trying to do now - overburdens the parents.

    Do people who are incapable of choosing or expressing their choice [Ashley, Katie, and Myra], and those who cannot even be aware of their right to choose [Terry Schiavo, or a lump of tissues that many call an unborn child] have rights? If so, who has the seniority in speaking for them? If, as Mahendra says, the family and the doctors were to concur, where is the need for a special law and court permission?

    ReplyDelete
  4. A little difficult, these situations.
    I would say that in the absence of a sane, conscious mind capable of giving consent, family can have a say in deciding the course of action if good faith can be objectively determined and corroborated, possibly by a team of doctors.

    ReplyDelete
  5. //The doctors may weigh in with the risks, but who determines if the risks were worth the gains from avoiding menstruation, for example?//
    If the patient in question is unable to do so, the patient's family has the full right to weigh the risks.

    //Should the society, State or some other collective have a say [reflected in law] in the matter?//
    No.

    //Do people who are incapable of choosing or expressing their choice, and those who cannot even be aware of their right to choose have rights?//
    Yes, they very much have rights. Where does the question of whether they have rights come from?! A person's rights are not dependent on that person's mental or physical state! The definition of individual rights is not conditional upon whether one is retarded or exceptionally brilliant. Individual rights exist, period (of course depending upon one's country and philosophy).

    //If so, who has the seniority in speaking for them?//
    Their family. Not the doctors, however objective and correct they may be.

    //If, as Mahendra says, the family and the doctors were to concur, where is the need for a special law and court permission?//
    No need. The court is out of the question from my perspective. The situation where the doctors and family differ is more interesting from an ethical viewpoint. And in such a case, I think the family wins over the doctors.

    //A little difficult, these situations.//
    Not for me.

    //I would say that in the absence of a sane, conscious mind capable of giving consent, family can have a say in deciding the course of action if good faith can be objectively determined and corroborated, possibly by a team of doctors.//
    The comment is self-contradictory in a way. If family can have a say, it means there is a conscious mind capable of giving consent. Whether it is sane or not, is irrelevant. Even if a team of doctors were to decide to act and pay the expenses out of their own pockets, the point is they should not do so when there is no consent.

    I think the key point of your post is that who has the rights to determine the choices of an individual when that individual has lost the capability of reason to determine the choices for himself/herself. And my answer is - the family - not the doctors, not the court, not the government.

    ReplyDelete
  6. Hi,

    and this ?
    http://news.bbc.co.uk/2/hi/middle_east/7098480.stm

    ReplyDelete
  7. Something reversible that renders them currently sterile and non-menstruating while not closing the doors on future research to improve their condition and keeps open their option to bear children if they so desire.

    This looks to me like a reasonable and humane idea, dont know if its impractical.

    regards,
    Jai

    ReplyDelete

Leave a Comment