Deciding who decides at the end of life

Pennsylvania’s Department of Welfare is working to clarify the rules about who’s in charge when it comes to end-of-life health care decisions for special needs adults.

Pennsylvania’s Department of Welfare is working to clarify the rules about who’s in charge when it comes to end-of-life health care decisions for special needs adults.

The story of a Montgomery County woman with lifelong developmental and physical disabilities alerted officials to potential confusion about the law.

In 2006, when Aimee Sandler got sick and stopped eating, managers at her group home wanted to place her on a feeding tube. Her sister Abigail Sandler says outside doctors said Aimee was dying, and the family opposed the decision to feed her artificially.

Sandler: That’s how bizarre this was: The group home was being paid to take care her, they wanted to have the feeding tube because it was easier to pour that down her throat than to have someone sit there and attempt to feed her.

Abigail says it was a conflict of interest for group home officials to make end-of-life decisions, when they were being paid by the state to care for Aimee indefinitely.

When Aimee landed in a nearby hospital, there was confusion about whose directions to follow. After a bioethics hearing, the hospital sided with the Sandler family.

Since then, Abigail and others have been pushing Pennsylvania for a new interpretation of state law, and that guidance is due out this month.

Inderwies: Oftentimes what we have seen in the past, these individuals will either wind up with feeding tubes or unnecessary treatment that do nothing but prolong life, versus prolong quality of life.

Gail Inderwies leads Keystone Hospice and worked with state officials on the “Procedures for Surrogate Healthcare Decision Making.”

She says the bulletin makes sure that people with intellectual disabilities have an independent voice to represent them at the end of life.

[Web note: After entering hospice care, Aimee Sandler received treatment that allowed her to begin eating normally again. She recovered and moved on to a new group home and lived for three more years before dying in 2009.]