11/28/2000 Perry Lee & Crista Johnson v. Dep't of Soc. & Health Servs. (In re Dob)

200 Wash.App. 414

404 P.3d 575

In the MATTER OF the DEPENDENCY OF: Griffin LEE DOB: 11/28/2000

Perry Lee and Crista Johnson, Appellants,

v.Department of Social and Health Services, Respondent.

No. 74065-2-I (consol. with No. 74968-4-I and No. 74969-2-I).

Court of Appeals of Washington, Division 1.

FILED: September 11, 2017

Neil Martin Fox, Law Office of Neil Fox, PLLC, 2125 Western Ave., Ste. 330, Seattle, WA, 98121, Heidi L. Nagel Redinger, Law Offices PLLC, 1200 Westlake Ave. N., Ste. 905, Seattle, WA, 98109-3547, for Appellants.

Diane Lamon Dorsey, Attorney at Law, Office of the Attorney General, 800 5th Ave., Ste. 2000, Seattle, WA, 98104-3188, for Respondent.

Joan Terese Freeman, Joan T. Freeman, Attorney at Law, P.O. Box 15845, Seattle, WA, 98115-0845, Michael Edward Scoville, Jeffery Shane Clackley, Perkins Coie LLP, 1201 3rd Ave., Ste. 4900, Seattle, WA, 98101-3099, for Guardian Ad Litem.

Scott Crain, Northwest Justice Project, 401 2nd Ave. S., Ste. 407, Seattle, WA, 98104-3811, Alberto Daniel Casas, Northwest Justice Project, 715 Tacoma Ave. S., Tacoma, WA, 98402-2206, as Amicus Curiae on behalf of Northwest Justice Project.

Heidi L. Nagel, Redinger Law Offices PLLC, 1200 Westlake Ave. N., Ste. 905, Seattle, WA, 98109-3547, for Other Parties.

PUBLISHED OPINION

Dwyer, J.¶1 This case contains aspects of both tragedy and travesty. At the center of it all is a profoundly disabled young boy, now aged to early adolescence. Cared for by his parents in the family home for over a dozen years, without government financial assistance, he eventually appears at a hospital near death from starvation. The chaotic aftermath of his appearance culminates in a dependency trial in which the law is misapplied and unsupportable findings and determinations are made. The enmity on all sides is palpable. Whether this enmity can or will lessen is beyond our control. But ensuring that the law be applied equally and fairly is not. Accordingly, we reverse the judgment and challenged orders of the trial court and remand this action for new proceedings consistent with this opinion.

I

¶2 Griffin¹ was born to Crista Johnson and Perry Lee on November 28, 2000. Griffin has a fraternal twin, one older brother, and one younger brother. Griffin's brothers are healthy.

¶3 Ms. Johnson and Mr. Lee live together with their children in Seattle. Ms. Johnson is a program manager who works between 40 and 70 hours each week. Mr. Lee was employed as a product manager but left his career to be a stay at home father from 2000 through 2013. Mr. Lee has been an officer of the parent teacher association, volunteered with the special education program, and has been involved with the Seattle Central Little League, Capitol Hill Soccer Club, and the Mitochondrial Guild—a group formed to raise money for mitochondrial research. Mr. Lee is currently employed as a fiscal specialist at Washington Middle School.

Medical History

¶4 Griffin was born with numerous medical conditions, including epilepsy, mitochondrial disorder, cortical visual impairment, developmental delays, chronic vomiting, and kidney stones. Griffin is functionally blind, nonverbal, nonambulatory, and exhibits self-injurious behavior. Griffin also has low bone mineralization and minimal density, causing his bones to break easily.

¶5 Dr. Russell Saneto, Griffin's neurologist, placed Griffin on a ketogenic diet when he was an infant. The ketogenic diet was intended to help manage Griffin's seizures. Ketogenic diets are high in fats but low in carbohydrates and proteins. Griffin's diet required close monitoring and frequent supplementation with vitamins and minerals to prevent deficiencies. Griffin was seizure-free from 2004 until late 2013 while on the ketogenic diet.

¶6 Caring for Griffin proved both challenging and time consuming. Each day, Griffin's parents would bathe and dress him, brush his teeth, bottle feed him, prepare his meals for the day, and change his diapers. Griffin attended school most days and often participated in physical therapy, occupational therapy, and vision therapy. Because Griffin's medical conditions are so complex, his parents sought help from medical clinics around the country. Griffin's parents drove him to appointments at clinics around Seattle, Detroit, St. Louis, and Vancouver, Canada. Ms. Johnson testified that she was not able to find other parents with a similar family and a child that required as much care as Griffin.

¶7 Griffin enjoys playing with his brothers while at home. Griffin recognizes his brothers and responds to them differently than he does to strangers. Griffin and his brothers vacationed together using the family car, which his parents outfitted to accommodate a refrigerator used to store Griffin's formula. Despite their best efforts, Griffin's parents often worried that their nondisabled children were not getting enough attention. Griffin's brothers helped raise him but—as children themselves—they were never "in charge" of Griffin.

¶8 Griffin has been hospitalized numerous times throughout his life, often because of chronic vomiting and dehydration. Griffin was hospitalized at least seven times between 2007 and 2013. When hospitalized, Griffin was typically given intravenous fluid therapy as well as nutrition through a nasal feeding tube. Although Griffin's parents always consented to the temporary use of the nasal feeding tube, the subject was very contentious. Griffin's parents refused to take Griffin home with a nasal feeding tube inserted because they were concerned that Griffin would tear out the tube.

¶9 Griffin was chronically malnourished between the ages of 6 and 13. Between 2007 and 2014, Griffin's weight fluctuated between 11.4 kgs and 15 kgs. Hospitalization resulted in slight weight gain, although Griffin's weight would drop after being discharged. Because of Griffin's chronic malnourishment, the subject of a permanent feeding tube (g-tube ) was discussed with his parents on multiple occasions. The issue of g-tube use is among the most contentious subjects in this wrenching dispute.

¶10 Griffin's parents consistently opposed the surgical insertion of a g-tube as a solution for Griffin's malnourishment. His parents believed that Griffin enjoyed the process of bottle feeding and they were concerned that Griffin's self-injurious behavior would result in him pulling out any permanent tubes that were inserted. Griffin's parents were not always able to effectively convey their concerns to the medical providers and, as a result, the medical providers were not able to satisfactorily alleviate the parents' concerns.²

¶11 Medical professionals at Seattle Children's Hospital (SCH), where Griffin received most of his treatment, discussed the g-tube with Griffin's parents on numerous occasions. Dr. Saneto also discussed the g-tube with Griffin's parents on at least two occasions and offered recommendations concerning methods of preventing Griffin from removing the g-tube. Dr. Saneto believed that the g-tube would alleviate Griffin's vomiting. Griffin's gastrointestinal clinic doctor recommended a g-tube in 2007. Griffin's ketogenic dietician, Aaron Owens, also recommended a g-tube in 2007. Griffin's parents refused.

¶12 In 2008, Dr. Saneto referred Griffin to the Medically Complex Child (MCC) Service at SCH. Christa Kleiner, an MCC pediatric nurse practitioner, worked with Griffin during that time. Kleiner informed Griffin's parents that the MCC team "believed that [Griffin] needed to be fed through a tube rather than through the bottle and that would help him to become better nourished and less vomiting and it would be part of the workup to understand what was going on." Griffin's parents refused placement of a permanent tube but allowed the MCC team to use a temporary tube. The MCC team believed that a feeding tube could solve Griffin's frequent vomiting, as the vomiting may have been caused by Griffin's tendency to drink bottles very quickly.³ Kleiner later testified that the MCC team would not recommend a feeding tube if they felt that the tube would be pulled out frequently.

¶13 The use of the temporary feeding tube helped to alleviate Griffin's vomiting. However, Griffin did not gain any weight despite receiving approximately 2,100 calories per day. By the end of the 2008 hospitalization, the MCC team determined that Griffin's failure to thrive "may be due to his underlying condition and not necessarily inadequate intake/excessive vomiting." The MCC team believed that Griffin "would not benefit from a g-tube placement and there would be no medical indication for forcing the parents to place a g-tube at this time."

Ethics Consultations

¶14 Griffin was hospitalized for vomiting and dehydration on November 30, 2011. Griffin's school had contacted child protective services (CPS) to report possible neglect. Accordingly, the child abuse and neglect team at SCH became involved. Griffin's parents refused to consent to the insertion of a g-tube during this hospitalization.⁴

¶15 During the November 2011 hospitalization, SCH referred Griffin's case for a bioethics consultation. The ethics consultation was performed by Dr. Benjamin Wilfond, the director of the Treuman Katz Center for Pediatric Bioethics at SCH. Dr. Wilfond consulted with members of the MCC team and other care providers at SCH to complete the consultation. The purpose of the ethics consultation was to determine whether SCH's continued treatment of Griffin without the use of a g-tube constituted neglect "in an 11 yo 11 Kg boy with profound developmental delay and seizures, who has ... recently had fracture related to osteopenia."

¶16 Dr. Wilfond noted that Griffin's parents "have been committed to caring for Griffin and involving him in family life," but were strongly opposed to the use of a permanent feeding tube. Griffin's parents believed that weight gain would not offer Griffin a significant benefit to his quality of life to justify the medical intervention. Dr. Wilfond agreed that it was "not clear...