Consent and Dignity: The Case of Ashley

The news recently has contained the story of Ashley and her parents. Ashley is a young girl afflicted with a brain condition that did not allow her brain to develop. She is currently 9 years old, but has the brain of an infant. She will not be getting any better.

The story concerns the fact that her parents had doctors perform medical treatments designed to keep her small, and in a permanent child-like state. Procedures includes high doses of estrogen to limit her height, a hysterectomy to avoid menstruation, and surgical removal of breast buds to limit breast development.

All of this makes her easier to care for, her parents report. It is easier to get her out on family trips, to move her (as her condition requires she be moved since she cannot move herself), and to save her discomforts that would afflict her as physically mature adult.

Right or wrong?

Let’s start with this: The article where I first encountered this case stated, “The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease or convenience.”

Technically, this is false.

A person’s choices are those actions that best fulfill their own desires, given their beliefs. The most altruistic person in the world (the person with the strongest desire that somebody else is well off) still has some interest in his or her own ease and comfort.

Assume that a person has two options available. Both options will equally provide for the person that the agent cares for. One of which would be extremely burdensome on the agent, while the second is extremely easy. If the agent has no care to his or her own ease or convenience, he would see these two options as a wash. Faced with the option, he would shrug his shoulders and say, “It does not matter to me.” Clearly, his desire for his own ease and comfort would affect his decision. All else being equal, he will select the easier option.

We can change the case slightly, so that the burdensome option provides the patient with only the slightest personal benefit. Yet, for the caretaker the act is similar to putting one’s hand in a hot fire. Clearly, in this case, the caretaker’s decision will still not be guided entirely by what is in the best interest of the patient. He will conclude that the slight benefit to the patient is not worth such great discomfort.

We all would. That is how desires work.

These facts are the foundation for an argument for personal autonomy and liberty. Whenever we put one person’s decisions in the hands of another person, that other person will necessarily compromise the well-being of the patient for his own ease and comfort (or the fulfillment of whatever other desires he might have) to some extent. It may be miniscule, and his efforts on behalf of the patient may be above and beyond the call of duty, but it will never reach the point of complete disregard for the fulfillment of his other desires.

Even if the agent sacrifices his own life, his other desires (those served by living) are not disregarded. They are, instead, outweighed.

However, there are cases in which an individual simply is not capable of making decisions for herself – of guiding her own life. In this case, in spite of the inherent flaws, it is necessary to trust decisions about her welfare to somebody else. Preferably, it will be somebody with a strong desire that her (the patient’s) desires be fulfilled.

In this case, what types of decisions should we be hoping for?

What we should hope for is that the agent will make those choices for the patient that the patient would make for herself if she were able – and that are morally permissible. The patient, in turn, will seek to choose that option that best fulfills her own desires; limited by the moral prohibition that there are wrong actions – actions that a patient with good desires will not perform.

The question, in this case, is whether Ashley’s parents are choosing those actions that Ashley would choose for herself, if she were able.

Of course, this criterion of what Ashley would choose for herself if she were able is a little tricky. We are not to seek the answer to what Ashley would choose for herself if she were to suddenly become a fully functional person. We must keep in mind that this thought experiment still has us imagining Ashley making decisions for the mentally handicapped person she is in the real world. We have to imagine a case in which Ashley were to ask, “Given that I have the mental capacity of an infant, and always will have, what option would I choose?”

Above, I said that Ashley’s parents will never be able to make a fully altruistic choice. As it turns out, they do not need to be. We are asking here about the choice that a good Ashley will make – an Ashley who, we may assume, will have desires compatible with the fulfillment of the desires of others. A good person, we may assume, would consider it relevant to consider whether a procedure will make life easier on her caregivers.

If I knew that I was about to face some debilitating illness, and my wife would need to take care of me, I would undergo certain procedures that would make her life easier. We are permitted, in making choices for Ashley, that a good Ashley would have some interest in the well-being of her caregivers. To some degree, the self-interest of the caregivers does not present a moral problem.

Yet, some people (particularly agents for organizations representing disabled persons) had a harsh reaction to news of these decisions.

The article reports,

Mary Johnson, editor of Ragged Edge, an online magazine for disability activists . . . said she felt for Ashley's parents and could understand why they had made the decision. But she feared that the treatment would open a Pandora's box that could have adverse effects for other children. "What will now be said in the case of a child with spina bifida, who you could argue has the same physical challenges but whose brain is fully functioning? This is very troubling.

Let us not overlook the fact that Mary Johnson was talking about a person whose brain “is fully functioning”.

The decision in these cases is based on what the agent would choose for herself if she were able to choose. In Ashley’s case, I have trouble coming up with any desire that Ashley herself will be expected to have that will be thwarted by the procedure – other than the desire to avoid the discomfort of the surgery itself. She will not even suffer the psychological harm of knowing she is different, or a thwarting of any desire to have children. She will, instead, apparently have desires fulfilled of being around her parents and being involved in activities.

In the case of the spina bifida patient with the fully functioning brain, we may assume here that they will have a fully functioning set of normal desires. Many of those desires would be thwarted by such a procedure. Thus, the procedure is not one that the patient “would have chosen for herself if she were able to choose”.

Ashley’s father reports that he has also been criticized for, “harming Ashley's dignity.” “Dignity” is a social construct. If there is any “loss of dignity”, it does not come from Ashley’s parents. It comes from others who cannot look at her situation, recognize that she is happier this way, and accept her. These people allegedly concerned with dignity are those saying that, for the sake of dignity, a loving father must force his already handicapped daughter to endure suffering and depravation that could otherwise be avoided. Has she not suffered enough without forcing this so-called “dignity” upon her?

Dignity is not preserved by forcing people to be what we want them to be, and in rejecting (with disgust?) the results of what they would choose for themselves if they are able. To say that Ashley has less dignity in this state – a state in which she will likely be more comfortable and enjoy more experiences – is like saying anybody not of normal height and development is inherently suffering from some deprivation in their dignity.

The idea that there is some “loss of dignity” in Ashley being happier than she would have otherwise been, and that to protect her ‘dignity’ that we must force misery upon her, is simply absurd.

Dignity consists in accepting people in whatever state they are most comfortable in themselves, so long as they are not a threat to others.