OVER PARENTAL OBJECTION, D.C. COURT OF APPEALS DENIES DISABLED CHILD LIFESAVING TREATMENT

A two-year-old with cerebral palsy and other disabilities will be denied resuscitation as a result of a July 29, 1999, ruling.

The District of Columbia Court of Appeals upheld a trial court's judgment that "upon balancing the burdens of continued life against the benefits and rewards of furthering life, [the child's] best interests would be served by issuing a DNR order."

The case, In re K.I., made no reference to the federal law, adopted by the Child Abuse Amendments of 1984, that generally requires provision of the "treatment most likely to be effective in correcting or ameliorating all life-threatening conditions" for a disabled infant.

The circumstances of the case are tragic from beginning to end.

The child identified as K.I., whose conception was apparently the result of incest between her mother and her mother's father, was born prematurely on June 15, 1997. The baby spent until November in the neonatal intensive care unit, being treated for an abnormal condition of the lung cells that requires oxygen, a form of sickle cell anemia, and problems with her airways and gastro-intestinal tract.

After she was released from the hospital, her mother, who was frequently intoxicated, failed to provide the baby with necessary oxygen, tube feeding, medication, and heart and apnea monitoring. Toward the end of December 1997, authorities with the D.C. Children and Family Services Administra-tion removed the child and she was hospitalized. In August 1998, at a court hearing which her mother failed to attend, K.I. was declared a neglected child.

Meanwhile, on July 21-22, 1998, the still-hospitalized K.I. suffered cardiac arrest and deprivation of oxygen to the brain, followed by a seven-hour seizure finally stopped only by putting her into a phenobarbitol-induced coma. At subsequent court hearings, doctors maintained that since then K.I. responds to painful but no other stimuli, breathes and has a heartbeat without the assistance of life support, will never regain normal neurological functioning, and will not improve her cognitive status.

A September 4, 1998, hearing was held in the D.C. Superior Court Family Division before Judge Rafael Diaz, at which K.I.'s putative father; a bioethicist from Georgetown University; doctors from the Washington Hospital for Sick Children and Children's Hospital where K.I. was being or had been treated; and court-appointed guardians all argued for a "Do Not Resuscitate" (DNR) order. For example, as reported in the Superior Court's opinion, Dr. Glenn Hornstein, K.I.'s doctor, "completed his testimony by stating that ... K.I. appears unlikely to have much of a chance making gains toward improving K.I.'s quality of life."

K.I.'s mother testified that apart from CPR, she wanted all available efforts used to save K.I. she said, "I know K.I. can make it.... It only matters if K.I. is breathing....There's a whole lot of them [like K.I.] out there." She said that "any amount of pain is worth it as long as K.I. breathes," a position the Court of Appeals later characterized as "singular."

On October 16, 1998, Judge Diaz issued a opinion stating that "when parental consent to the issuance of a DNR order is unreasonably withheld contrary to a [child's] best interests, the court's powers ... provide the authority to order medical personnel to forego extraordinary medical life-prolonging procedures."

In light of "her statements made to this Court regarding her desire to keep K.I. alive at all costs," Diaz found the mother's "refusal to consent to the entry of a Do Not Resuscitate order is both unreasonable and contrary to K.I.'s best interests" and directed the implementation of the DNR order.

The mother's attorney appealed this decision to D.C.'s highest court, which affirmed the lower court ruling on July 29, 1999. The Court of Appeals wrote, "Although [a parent] clearly has a liberty interest 'in the care, custody and management of [K.I.],' ... K.I.'s well-being takes precedence over ... parental rights." It held that "the standard of proof required for the issuance of a DNR in the best interests of a child is clear and convincing evidence," but ruled that the standard was met by the trial court judgment.

"Advocates of involuntary denial of lifesaving treatment have long been looking for a suitable 'test case' with which to establish their ability to put their quality of life judgments above a family's desire that a patient live," said Burke Balch, J.D., director of NRLC's Department of Medical Ethics. "In the sad circumstances of the 'K.I.' case, they found one."

Balch added, "Because of the circumstances, it was easy for the court to dismiss the mother's stated desire to preserve her daughter's life. The old adage that hard cases make bad law certainly applies here." Clearly, Balch concluded, "the K.I. decision will henceforth be widely cited to justify involuntary euthanasia in cases in which parents want to save the life of a child with a disability, but the hospital ethics committee rules that the child's 'quality of life' is too poor."