There is no clear path to health care decision making for people with developmental disabilities. Although the current laws attempt to create a framework for health care decision making, each situation comes with a different set of facts, so the law is decided on a case-by-case basis.

This case-by-case approach was evident on May 24, 2013 when the Appellate Division, Fourth Department of New York State ordered medical authorities to insert a feeding tube into a man with severe disabilities, which was against the wishes of his physician and parents.

In the Matter of Joseph P., 13-00798, Joseph P. is a 55-year old man with developmental disabilities who has the functional capacity of a four-to- six month old child. He suffers from profound mental retardation, cerebral palsy with spastic quadriplegia, and curvature of the spine

Joseph P. resided in a group home operated by the New York State Office for People with Developmental Disabilities (OPWDD) for 27 years until March 2013, when he was admitted to a hospital for treatment of a fever and dehydration. He was diagnosed with aspiration pneumonia during his stay in the hospital.

While at the hospital, Joseph P.’s attending physician determined that Joseph P. could no longer tolerate food or liquid by mouth, and that unless he received nutrition and hydration through a feeding tube, he would die within a short period of time.

Acting as his guardians under SCPA 1750-b, Joseph P.’s parents refused consent to the insertion of a feeding tube. This decision was supported by Joseph P.’s attending physician and the chief medical officer of the hospital where he was being treated. The attending physician and chief medical officer claimed that the treatment would impose an extraordinary burden on Joseph P.

OPWDD sought a court order to insert the feeding tube. Initially, the Supreme Court denied the petition, but the Appellate Division, Fourth Department reversed the denial and ordered the feeding tube to be inserted. Joseph P.’s parents argued that an extraordinary burden would be imposed on their son if he was forced to have a feeding tube. They claimed that tube feeding their son would force him to be moved to a new facility where he would need to be restrained to prevent him from removing the tube, and may cause medical complications that could increase his suffering.

Joseph P.’s nurse and the physician who serves as the medical director of the group home where Joseph lived for 27 years testified that the patient is alert and communicative, seemingly without pain, enjoys social interaction, and could live for many more years with a feeding tube.

The Appellate Division found that the evidence provided by Joseph P.’s parents failed to establish that inserting the feeding tube would impose an extraordinary burden on Joseph P. The court found “the burdens of prolonged life are not so great as to outweigh any pleasure, emotional enjoyment or other satisfaction that he may yet be able to derive from life.”

This case is an example of how the New York courts have struggled to balance the state interest in preserving life with the right of a patient, the surrogate, and derivative rights of guardians.