I came across an interesting story the other day that had sparked a lot of controversy in the medical ethics community and decided to take a moment and share it here with you all. Ashley X, a young girl who was born with a developmental brain condition known as static encephalopathy,(permanent and unchanging brain damage) had started showing signs of precocious puberty at the age of 6 (Appel 58). Her parents, who also serve as her main caregivers, decided to look into treatment options that would prevent their daughter from growing into a full adult. They argued that the treatments would make it easier to properly care for her, and that they would ultimately also make her more comfortable. In 2004, Seattle’s Children’s Hospital and Regional Medical Center began a series of surgical procedures on Ashley which included a hysterectomy to prevent cramping and menstrual cycles, breast bud removal, prophylactic appendectomy, and hormonal therapies that would close her growth plates (Appel 58). After everything was completed, it is estimated that Ashley’s height was reduced by 20% and her weight by 40% (Appel 58).
The procedures sparked heated ethical debates over what rights patients like Ashley should have alongside what decisions parents of children with severe mental disabilities ought to make for their child. Some argued that since Ashley was not suffering before her operations, that the parents should not have altered her body. They believe that people in similar situations as Ashley should not be refused the chance to grow into an adult body, despite their inability to understand the pros and cons of the decision. The idea that the problem lies within the institution of care-giving and not the patient themselves has also been discussed. One idea is that the parents should have adjusted how Ashley was treated, rather than alter her for the sake of convenience (“Is the “Ashley Treatment” Ethical?”).
On the other hand, her parents fully believe that the procedures have not only improved their daughter’s life, but have also enabled them to provide her with better care at home. Throughout the controversy, Ashley’s parents stood behind the medical staff that treated their daughter. Regardless of the complicated ethical arguments behind such procedures, at least 65 other children have undergone growth attenuation surgery since 2016 (Appel 60).
If you found this case interesting, you might enjoy reading more about the complicated mess that is medical ethics in Jacob M. Appel’s new book, Who Says You’re Dead: Medical and Ethical Dilemmas for the Curious and Concerned.
Until Next Time:
- Appel, Jacob M. Who Says You’re Dead: Medical and Ethical Dilemmas for the Curious and Concerned. Algonquin Books of Chapel Hill: New York, 2019.
- “Is the “Ashley Treatment” Ethical?” Institute of Clinical Bioethics. 1 May, 2013. https://sites.sju.edu/icb/is-the-ashley-treatment-ethical/