Sheila Pouliot's Story

Kathy Faber-Langendoen, M.D.

Sheila Pouliot was a 42 year old woman admitted to University Hospital in Syracuse in late December 1999 with a gastrointestinal bleed and possible aspiration pneumonia. She had been severely disabled since having mumps at the age of 8 months, after which she developed olivopontinecerebellar degeneration. Ms. Pouliot lived at home with her family until she was 20, at which time she was cared for in a state run group home. Her family maintained involvement in her care and life. At her baseline, she had flexion contractures of all four extremities; she exhibited pain by groaning and increased flexion of the left arm. She was partially blind and was bed bound.

On December 21, Ms. Pouliot became less responsive and was transferred to University Hospital for treatment of a GI bleed and aspiration pneumonia. After she was stabilized, Ms. Pouliot's family asked that aggressive treatment be withheld, including nutrition. New York State's Office of Mental Retardation and Developmental Disabilities (OMRDD) became aware of the situation and asserted that nutrition and hydration could not, under NY state law, be withheld. A legal guardian (not a family member) was appointed by the court, and, after a hearing involving Judge Tormey, the guardian, a lawyer representing the patient, the attending physician, OMRDD, and the Assistant Attorney General, a compromise decision was made to restart IV fluids and attempt to use the feeding (gastrostomy) tube. All parties agreed that TPN was not medically feasible. Ms. Pouliot was fluid resuscitated. Nutrition was infused through the G-tube, but she developed intractable hiccups, followed by projectile vomiting, and further G-tube feedings were stopped. IV hydration with D5NS only was continued from early January on. She received transdermal Fentanyl for pain.

By the end of February, Ms. Pouliot had developed massive edema, due to continued hydration in the face of protein malnutrition. She began to develop areas of skin breakdown at the sites of the Fentanyl patches and in the folds of her skin. On behalf of the patient, the guardian petitioned for a change in her treatment plan so intravenous fluids could be discontinued. Her attending physician, the Chair of University Hospital's Ethics Committee, and the Medical Director of University Hospital all argued that hydration in the absence of the ability to provide protein was outside standard medical practice and was causing harm to Ms. Pouliot. University Hospital stated that it would not opposed a court order to discontinue fluids. The Assistant Attorney General initially argued that stopping hydration or nutrition was not allowed by New York State law and that stopping hydration or nutrition constituted assisted suicide.

After hearing testimony and arguments on 1 March 2000, Judge Tormey ruled in Ms. Pouliot's favor. His order was entered the following day, and the Attorney General entered an notice that he would appeal, prompting an automatic stay. On March 3, Judge Lawton from the Appellate Division lifted the stay temporarily until the issue could be heard on the Appellate level on March 7, and intravenous hydration was discontinued on March 3. The intravenous line was maintained to give morphine to relieve pain and distress. In papers filed by the Attorney's General office on March 6, the Attorney General's office shifted its position, from arguing that NY law required the provision of nutrition and hydration in all circumstances involving a never-competent patient, to arguing that existing case law is unclear, particularly when continued administration of artificial nutrition and hydration will harm the patient and is, in the judgment of the patient's physicians, medically inappropriate.

Ms. Pouliot died on the evening of March 6, less than 24 hours before the scheduled hearing on whether to reimpose the stay of Judge Tormey's order. It is not yet known whether the Attorney General's office will continue to appeal or whether the appeals court will hear this matter in light of Ms. Pouliot's death.

Kathy Faber-Langendoen, M.D.
Medical Alumni Endowed Professor of Bioethics, SUNY Upstate Medical University
Chair, University Hospital Ethics Committee