Pediatric AIDS and advanced directives: a three-year prospective study in New York State

Most HIV-infected families currently receive their care in an ambulatory setting. Ambulatory care provides greater means of medical care, and planning for the infected family members. Advanced Directives (AD) and Do Not Resuscitate (DNR) for adults are now discussed in an ambulatory setting rather than under the duress of a hospital admission. We felt it is important to examine the practice of discussing AD/DNR with the families of pediatric AIDS patients in an out patient setting. Twenty-one and 26 AIDS-designated centers in New York State and five major hospitals in New York City were contacted through a telephone survey in 1991 and 1994, respectively. Questions were designed to obtain demographics of the hospital, pediatric AIDS population, and their DNR/AD policies. In 1991 and 1994, the survey was conducted with the pediatric unit of hospitals with pediatric AIDS. In 1991, only 12 (75%) hospitals had an existing policy on pediatric DNR. No hospital had admitted a patient with AD/DNR obtained as an outpatient, nor were there guidelines at any hospital to approach the issue in an outpatient setting. In 1994, 20 (95%) hospitals had a DNR policy for pediatric patients. We found that even though six patients were admitted with AD obtained as outpatients, no outpatient guidelines existed for AD/DNR for pediatrics. The number of cases of pediatric AIDS in New York State increased by 29.7% for the 1991-1994 period. While pediatric DNR existed in 1991/1994, we found there were presently no guidelines for obtaining AD/DNR for pediatric AIDS patients in an ambulatory setting. Families infected with HIV should have a caring atmosphere to help them address pediatric AD/DNR with their primary care providers. However, we believe that guidelines should be developed to address this issue.