PrintA group of scholars, experts and concerned parents concluded that it can be ethically acceptable to give gravely disabled children medical treatments that will stunt their growth.
The meeting convened last month was meant to host civil discussion over an issue that has drawn fiery debate since it exploded in the blogosphere in 2006.
The big questions:
Is it OK to stunt the growth of a person who will never walk or talk so caregivers can give the person the fullest life possible?
Or is this one step down a slippery slope toward callously maiming disabled people to make their existence more convenient for others?
The dialog started in earnest after two Washington state parents blogged in 2006 about removing the uterus and breast buds of their 6-year-old daughter. In the post, the parents explain:
A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. ...
Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age, a nine and a half year old body is more appropriate and provides her more dignity and integrity than a fully grown female body.
Among the prominent opponents of the decision to stunt Ashley’s growth is Disability Rights Washington, a group that advocates for people with disabilities. They conducted an investigation into the matter and determined that Ashley’s rights were violated when she was sterilized. Here’s why:
The sterilization portion of the 'Ashley Treatment' was conducted in violation of Washington State law, resulting in violation of Ashley’s constitutional and common law rights.
The Washington Supreme Court has held that a court order is required when parents seek to sterilize their minor or adult children with developmental disabilities, and that the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual’s best interests.
This decision does not apply in all states, though. For that reason, the doctors, scholars and families of disabled children attempted to create a guideline for others to follow. Ultimately, this is what they could agree on, according to a summary by the Hastings Center, a New York-based bioethics research group:
'Growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree.'
The group stressed the importance of having safeguards in place, such as eligibility criteria, a thorough decision-making process, and the involvement of ethics consultants or committees. Growth attenuation should be considered only for children who are nonambulatory and have persistent, profound developmental disabilities – about 4,000 such children are born each year in the United States. The decision-making process should begin with a competent evaluation of the child’s condition by general pediatricians and various specialists, who can also assess the prospects for improvement.
For its part, the public (or at least those who get their news from MSNBC) typically supports Ashley’s parents. Nearly 60 percent of the parents who replied to a poll agreed with the decision to stunt Ashley’s growth.
Comments
via Twitter