Dr. Douglas Diekema, a graduate of Calvin College, the official college of the Christian Reformed Church, is at the center of an ethics debate over the treatment of a severely disabled girl named Ashley.
Diekema was thrust into the limelight after publishing an article in Pediatrics & Adolescent Medicine in October 2006. In the article, which he co-wrote with Dr. Daniel Gunther, Diekema described a series of procedures and treatments that were used at Seattle Children’s Hospital to attenuate Ashley’s growth and keep her child-size. Diekema was the ethicist involved with the case.
The treatment, which has become known as “Ashley’s Treatment,” was done at the request of Ashley’s parents. Ashley, now age 9, was diagnosed with static encephalopathy soon after she was born. She is severely disabled, unable to hold up her head, sit on her own, hold a toy, or even eat (she is tube fed). Her mental capacity has not developed beyond that of a 3-month-old.
Nearly three years ago doctors began Ashley on a high level of estrogen, conducted a hysterectomy, and removed breast tissue. The purpose was to keep Ashley small, allowing her parents to care for her at home, increasing her opportunities for movement and contact with her family, and ultimately improving her quality of life. The hysterectomy and breast surgery reduce discomfort and pain for a child incapable of communicating her desires.
“It was a difficult decision, and it should have been. We had to wrestle with three separate requests (growth attenuation, hysterectomy, and breast bud removal) and make a decision regarding each one of them. In all three cases we asked ourselves first whether Ashley was likely to benefit from the procedure. Not the parents, not society, but Ashley,” said Diekema.
Since publication, more than 400 articles have been published worldwide about the ethics of the treatment. In response to the claim that this case could lead down a slippery slope, Diekema said, “The purpose of our paper was to suggest that physicians should not simply do that [the “Ashley Treatment”], but do so—as we suggest in our paper—only after a very careful review by something like an ethics committee whose job it is to make sure the treatment will benefit the patient and not substantially harm the patient.
“Our paper also suggests that it would be difficult to justify doing any of these things in someone who was not permanently, profoundly mentally disabled, non-ambulatory, and always dependent on others to meet all needs. Those are pretty rigid criteria.”
Diekema is clinical director of the Treuman Katz Center for Pediatric Bioethics, chairs the bioethics committee of the American Academy of Pediatrics, and is on the ethics committee of the American Board of Pediatrics. A member of University Presbyterian Church in Seattle, he said he seeks to be a steward of the tools that God has given him.
“In this case, I am content that we have used those tools to make life more comfortable for one of God’s loved ones,” he said.