Helping families care for the helpless

Bioethicists who work in health care are frequently called upon to make difficult decisions in often less than desirable situations. Thankfully, the steady introduction of new technologies provide ethicists, health practitioners and families with a variety of options. The trick these days is to choose the most desirable course of action. But the fact that most new technologies and the manner in which they are applied often appear shocking and radical at the outset makes ethical decisions even more difficult.

Take the recent case of a severely disabled 6-year old girl and her parents' decision to administer her estrogen treatments to deliberately stunt her growth. According to her parents, the reason for wanting the girl to remain small have to do with their ability to care for her on an ongoing basis. The fear is that she will grow too large such that the parents will no longer be able to care for the girl and will have to be institutionalized. The girl was also given a hysterectomy.

At first blush, this sounds quite bizarre and even a bit extreme. My own initial reaction was negative; any time I hear about constraints (or what might even be considered mutilation) being deliberately imposed upon someone my alarm bells go off. But after deeper analysis, I have come to conclude that I agree with the parents and their medical advisers.

Before I get into my reasoning it’s important that that the girl’s condition be described for proper context. She is 6-years old and suffers from severe combined neurologic and cognitive impairment; she is physically disabled and will permanently have the mental capacity of an infant. There is currently no known treatment to help alleviate this. The girl can respond to her parents and siblings by vocalizing and smiling in response to care and affection. She is described as being an “integral, and much loved, member of the family."

That said, her parents recently came to the conclusion that her continued growth would soon start to pose a problem. Children with combined neurologic and cognitive impairment are utterly dependent on their caregivers much like an infant is – they cannot bathe, dress and transport themselves without assistance. In these cases, the responsibility almost always falls on the parents. Over time, as the child grows into an adult, these challenges increase.

Given these factors, and considering the loving and healthy household that the girl currently finds herself in, the question must be asked: Will the estrogen doses and hysterectomy reduce the quality of life for this girl? One could make a strong case that, by virtue of the fact that her parents will still able to care for her, that her quality of life will in fact increase (or remain consistent) relative to the kind of care she might hope to receive by her parents should she not receive these treatments, or considering the introduction of a 3rd party and her potential response and adjustment to it.

Moreover, this girl is severely disabled enough such that her self-awareness is virtually negligible. She is barely engaged with her outer and inner worlds. Nonetheless, like an infant, she requires care such that she remains comfortable and finds herself in a loving environment. Ultimately, however, the estrogen doses are not so much for the girl as they are for the parents. Aside from the enhanced care that she will receive from her parents as a result of the treatments, the doses will have no bearing whatsoever on the girl given her permanent condition.

A colleague of mine noted that there are some potential abuse issues that need to be addressed. For example, is the resource-crunched medical establishment more inclined to have parents take the burden of care? Is this a way of passing the buck? Is the hysterectomy really necessary?

These are valid concerns, but I think they can all be addressed.

First, I believe the wishes of the parents are what is driving this decision and not the demands of the medical institution. In this case, it appears to me that the needs and desires of the parents are being met.

As for the hysterectomy, I have to question the value of keeping this girl fertile. If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.

Stepping back a bit, it’s obvious that this is an undesirable situation to begin with. I have to wonder if this case qualifies as a so-called ‘wrongful birth.’ On a related note, the UK's Royal College of Obstetricians and Gynaecology are now urging health regulators to consider allowing the "active euthanasia" of severely disabled newborn babies (notably when babies are born with such debilitating and painful conditions as severe spina bifida). "A very disabled child can mean a disabled family," notes the College, "We would like the working party to think more radically about non-resuscitation, withdrawal of treatment decisions, the best interests test, and active euthanasia, as they are ways of widening the management options available to the sickest of newborns."

One would hope that future medical technologies will help severely disabled children overcome their debilitating impairments – but the reality of the situation is that such treatments are quite a ways off. This girl is alive in the here-and-now and as such should be given the appropriate level of care. And of equal importance, the family's needs have to be considered as well. In this particular case, it will be through the estrogen treatments that the parents will be able to make the best of a difficult situation.