Preventable? Death

This week a jury in Oregon deliberates the fate of the parents of Neil Beagley. Neil died of complications of posterior urethral valves (PUV), a blockage of the male urinary tract. Last summer (2009), the parents of his niece were tried and convicted in her death from pneumonia and sepsis in infancy, with her father spending just under 2 months in jail for second-degree criminal mistreatment.

Why so many childhood deaths in this family? They belong to Followers of Christ, a group of approximately 2,000 in the Oregon City area who believe in healing by prayer and other spiritual means. Neil’s father and others in the group have been quoted in the press as saying going to the doctor shows a lack of faith. A large number of preventable childhood deaths led Oregon to modify its shield laws in 1999. These laws had previously allowed parents to use “spiritual healing” as a defense in the deaths of their children; the trial of Ava Worthington’s parents was the first test of these laws:

The Followers of Christ deaths prompted a firestorm in the 1999 state Legislature over religious freedom, parental rights and the state’s responsibility to protect children. After months of debate, legislators passed a compromise bill that emerged in the final days of the session and was quickly signed into law by Gov. John Kitzhaber.

The 1999 law eliminated Oregon’s “spiritual-healing defense” in cases of second-degree manslaughter, first- and second-degree criminal mistreatment and nonpayment of child support.

Pediatric nephrology in-the-news always catches my eye. The ethics of refusing care come up frequently in nephrology as well, even when chldren are the patients. I had to learn more about this case!

The Disease

PUV results in complete blockage of the urinary tract (click on the diagram for a bigger version at the original website). It only occurs in males. The obstruction leads to dilatation of the bladder and ureters; urine may also reflux up the ureter rather than exiting the bladder during urination. The condition is most often diagnosed because of an abnormal prenatal ultrasound; after birth, a weak urinary stream, urinary tract infections, or protuberant bladder may lead to the diagnosis. Rarely, it is missed in infancy and the child presents with deterioration of kidney function.

Treatment first requires relieving the obstruction so urine can exit the body. Some boys may have mild renal dysfunction and do well; however, most will have some damage to the kidneys leading to kidney failure. Since chronic kidney disease has few symptoms before stage 3, monitoring growth and laboratory studies in these children is essential to prevent complications.

The Faith

Wikipedia provides a description of this religious group based in Oregon City, excerpted here:

The Oregon church was founded in the early 20th century by the Reverend Walter White, a "powerful, charismatic preacher" who led a congregation which broke away from a Kansas church of the same name in the 1940s.^[2][3] White and his congregation moved to Oregon, and built a house of worship on Molalla Avenue in Oregon City, now a suburb of Portland. White died in 1969, and the church has functioned without a minister since then.^[4] In addition to the denomination's Oregon City church building,

Estimates of the church's membership range from 1,200^[4] to 2,300^[5] A congregation of approximately 500 members is found in Caldwell, Idaho,^[6] though the two churches have not been in communication with each other for about 40 years. The Oregon City church has secluded itself from all other churches that share its name.

The church is Pentecostal in origin, and believes in a literal interpretation of Scripture, including in the power of faith healing -- in the context of Pentecostal Christianity, the use of prayer and laying on of hands to cure illness.^[3] Unlike many other churches which include faith healing as part of their doctrine, the Followers refuse all forms of medicine and professional medical care. The church practices shunning of those who violate or challenge church doctrine, including those who seek medical treatment; it has been alleged that many Followers clandestinely see doctors and dentists in defiance of church teaching^[4]. The church is also known for legalism^[7] and a male-dominated society.^[4] 

Since the death of White, members of the church have increasingly isolated themselves from the community at large. The church no longer recruits or admits new members.^[2] According to church members, children raised in the church attend public schools, but don't socialize outside the church once reaching middle-school age.^[8]

Oregon health authorities first noted the church because of its infant mortality rate ~26 times that of the rest of the state. Investigation of deaths from the late 20th century led to the change in Oregon’s shield laws in 1999.

Because of its insularity and indoctrination, some have described this church as a cult.

The Boy

The older sisters of Neil, including the mother of Ava, attended public schools; however, Neil was home-schooled exclusively after third grade:

On the stand, the Beagleys offered stories of a son who once proclaimed that he didn't need to go to elementary school because he already knew everything.

Public school with its health requirements might have led to an earlier diagnosis; his short stature might have prompted concern among teachers.

He spent his afternoons working with his father in the business Neil hoped to own someday and working on a 1973 Camaro. He was very close to his father, a man who never visited a medical doctor unless it was required for work and who once told detectives that seeking medical care showed a "lack of faith." Neil spent time with his family and other relatives, all of whom are Followers of Christ. In short, this child had no contact with the world outside of this faith, other than social workers trying to avert unnecessary deaths of children within the community.

Other testimony noted his strong faith. Neil read his own bible faithfully, keeping it near while on his deathbed.

The Death

The prosecution describes this as an unnecessary death due to a treatable illness. The death of Ava was clearly tragic, since antibiotics could have cured her acute illness, leaving her to lead a long, healthy life. As a toddler, she had no input into the decision process. Is this as true of Neil?

Neil had a chronic disorder; the treatment of it would make him technology-dependent for life. He would receive dialysis until he got a successful kidney transplant or died. His life would require drugs and frequent medical visits. I have treated children with this disorder, and they lead complicated but worthwhile lives.

Neil never stood a chance.

The insular nature of his upbringing and the rigid beliefs of his parents would not have permitted him to be treated optimally. Had his parents permitted treatments they could be shunned by their community which was their life, their salvation. At the age of 16, Neil probably would not have followed a treatment plan himself, given his head-strong nature, religious beliefs, and lack of exposure to other viewpoints. Even if, somehow, treatment had been enforced, I suspect he would have stopped when he reached the age of majority. And that would have been his right.

Neil’s death could have been delayed a couple of years, but prevented? Probably not in the context of his culture and upbringing.

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All of these are moot points, mere speculation on the part of someone with no direct knowledge of the community, the family, or the patient. Take them for what they are worth in that context.

Much of the information regarding the case was taken from stories at OregonLive.com, linked to in the text above.