Baby Ryan and Virtual Futility

Perhaps someday the courts will accept a definition of "medical futility" that will establish when further care is inappropriate and tell physicians, patients, and their families who has the authority to discontinue such care. Yet, for the third time in recent years, a high-visibility case about "futility" has failed to produce a definitive legal ruling. Instead, the case provided a new twist on the so-called Baby Doe regulations promulgated during the Reagan administration. A Tale of Two Cities Ryan Nguyen (pronounced Win) was born six weeks premature on 27 October 1994, asphyxiated and with barely a heartbeat. His physicians at Sacred Heart Hospital in Spokane, Washington, soon diagnosed severe medical problems including brain damage, an intestinal blockage, and kidneys that produced water but did not remove toxins from his system. After several weeks of sustaining Ryan through intravenous feedings and dialysis, the physicians concluded that he was almost certain to die even if he could be kept on dialysis for two years and then given a kidney transplant. Unable to provide such services, they consulted the kidney specialists at the Children's Hospital and Medical Center in Seattle. This program was unwilling to treat Ryan because, in the words of University of Washington professor Ellis D. Avner, "long-term dialysis would not only be inappropriate but would be immoral" since it would prolong agony with "no likelihood of a good outcome." But Nghia and Darla Nguyen refused to accept the recommendation that their son be allowed to die. When they met with Ryan's physicians on 17 November they came armed with the name of another physician, at the Oregon Health Sciences University, from whom they wanted a second opinion. Four days later, the Sacred Heart neonatologist had a phone conversation with Mr. Nguyen about the report they had body received from Portland: Ryan would not be eligible for dialysis there either. Rather than come in for a recommended consultation with the Sacred Heart physicians, on 22 November the Nguyens sought and obtained an emergency order from Commissioner David Thorne of the Spokane County Superior Court directing the hospital to "take whatever immediate steps [are] necessary to stabilize and maintain the life of Ryan Nguyen, including dialysis of the kidney functions."(1) Why take this extraordinary legal step? The Nguyens' attorney says the hospital had removed Ryan from dialysis and refused to put him back. Sacred Heart's health care ethicist Johnny Cox contends, however, that the hospital was providing all treatment needed to maintain Ryan pending the consultation with outside experts, and that the physicians still expected to work with the parents in finding a solution. Perhaps, he speculates, Sacred Heart's statement that it was not capable of providing the long-term dialysis then thought to be needed by Ryan, along with the recommendation of "comfort measures only," left the Nguyens with the misimpression that the hospital planned to act unilaterally, without seeking court appointment of a guardian to replace them as decisionmakers for Ryan. As a result of media attention to the case, physicians at Legacy Emanuel Children's Hospital in Portland contacted Sacred Heart and offered to accept Ryan for treatment. On 13 December, Ryan's parents and guardian ad litem agreed to the transfer, and his fate moved out of the courts and back into the medical arena. Three days later, the physicians at Legacy Emanuel performed surgery to clear Ryan's blocked intestines. Since then he has made normal progress in recovering from the surgery and switching to nutrition by mouth, and by the end of January 1995, his physicians were prepared to send him home. Having not required dialysis since shortly after arriving in Portland, he is not expected to need a kidney transplant as an infant. Finally, despite the seizures he experienced early in life and a CAT scan that was interpreted as showing irreversible brain injury, he seems free of any permanent neurological deficit and shows age-appropriate development; his CAT scan at Legacy Emanuel reveals no structural problems. …