Judge rules out coercion for liver transplant boy

BMJ 1994; 308 doi: (Published 25 June 1994) Cite this as: BMJ 1994;308:1660
  1. F B Charatan

    The case of a 15 year old Florida boy who is facing a possible third liver transplant operation is posing a difficult problem for doctors and medical ethicists at Jackson Memorial Hospital in Miami.

    Benito Agrelo was born jaundiced and with an enlarged liver and spleen. Dr Andreas G Tzakis performed Agrelo's first liver transplant operation in 1987 at Pittsburgh Children's Hospital when the boy was 8. After the first transplant failed Dr Tzakis did a second liver transplant operation in June 1992. Agrelo was then given the immunosuppressant drug FK506, but he suffered from distressing side effects, including leg and back pain, headache, irritability, and depression. He complained that the pain prevented him from walking or playing with his friends. He was unable to read.

    Last summer he began to cut back on the drugs he was taking, and in October he decided to stop them altogether. After some weeks' improvement his condition again deteriorated. When administrators at Pittsburgh Children's Hospital found that he had stopped his treatment they called the child abuse hotline of the Florida State Department of Health and Rehabilitation. Early this month health officials armed with a detention order issued on the basis of alleged medical neglect, together with police officers, an ambulance, and a fire rescue van, went to Agrelo's home in suburban Coral Springs and forcibly removed him to Jackson Memorial Hospital. During his four days in hospital he refused to give blood or submit to any examinations other than a basic physical examination and checks for vital signs. On 11 June Broward County judge Arthur Birken, who had met Agrelo in the hospital and taken testimony from doctors and lawyers, decided that he could return home and could not be forced to take drugs against his will.

    Dr Andreas G Tzakis, codirector of the University of Miami's transplant programme at Jackson Memorial Hospital, said that Agrelo had stopped taking his drugs “on his own initiative without our knowledge.” He said that there had been many attempts by Pittsburgh Children's Hospital and the local family doctor to get Agrelo to consult them. Despite the teenager's grave prognosis he would advise the family, “Don't give up on medical treatment.” He recognised that non compliance was a common problem in this age group.

    According to newspaper reports, Agrelo said, “I'd rather stay home and live as close as I can to a natural life and die without having side effects.” He said that he would refuse to have another transplant operation. His mother, who had been cited for medical neglect by officials of the Florida State Department of Health and Rehabilitation, said, “Benny was granted exactly what he deserves. He will get to live his life the way he wants.”

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