August 19, 2009

health reform takes front page and ethics case #1

everything is moving so quickly that it's hard to keep track of everything.

this week our lectures have run the gammit from statistics to evaluating resources to genetics to public health to ethics; but I guess those are the major themes of this block, so it makes sense.

Two things:
1) Obama wrote an op-ed about health care reform in the NYT and a bunch of different people responded, including FOX News, Steven Colbert, and Gail Collins.

2) our ethics case tomorrow is on a pretty debated topic known as "The Ashley Treatment" The case involves treatment decisions for a young girl (I think she's about 7 at the time of the decision) who is severely neurologically and developmentally impaired. Doctors have diagnosed her “static encephalopathy of unknown etiology”, meaning "an insult to the brain of unknown origin or cause" (encephalopathy of unknown origin) that will not improve (static). From her parent's blog (, her abilities are extremely limited "Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our Pillow Angel since she is so sweet and stays right where we place her—usually on a pillow."

After she showed very preliminary signs of pubertal development, her parents took her to see an endocrinologist and eventually came up with a treatment plan that involved a hysterectomy (without oophorectomy, or ovarian removal), removal of her breast buds, and an appendectomy, followed by high dose estrogen treatment. The goal of this treatment was to attenuate her growth. Her parents requested this treatment because they determined that it would most maintain Ashley's quality of life because it would allow them to continue to care for her (not institutionalize her), move her easily (thus including her, preventing bed sores, increasing circulation), and prevent any unncessary pain (menstrual cramping, unintended pregnancy, appendicitis) that she would not be able to communicate to them.

Concerns include the unknowns about this risk/benefit analysis including: very little is known about the consequences of stunting growth on women with developmental and neurological impairment; there are serious risks with high risk estrogen treatment, some of which - like blood clots in the leg - are increased in people who do not move; how do we know that this treatment is increasing Ashley's happiness and not stunting it in some way (can we assess this confidently?); how do we know that her condition will not improve with age or with continued treatment as an infant?

After consultation with the ethics board at the hospital, Ashley's doctors went ahead with the surgery and hormone treatment. She's now about 10 years old and no major complications have been reported. We're discussing issues of consent and assent tomorrow and I am eager to see what people think of this case. If you look on the defense and explanation from Ashley's parents on their blog:!E25811FD0AF7C45C!1837.entry
as well as statements from the disability law project, ethics committees and numerous physicians - it gets complicated. More on what we discuss later.

No comments:

Post a Comment