Pennsylvania announces bulletin on Procedures for Surrogate Healthcare Decision Making

The commonwealth has issued a bulletin intended to strengthen and clarify the roles of families and other parties in making healthcare choices for adults with special needs, acting Secretary of Public Welfare Michael Nardone announced today.

"Pennsylvania has numerous laws addressing surrogate healthcare decision-making for adults with special needs, and this has, at times, led to inconsistent practices that can limit the voice of families when it comes to making critical decisions about the care of their loved ones," Nardone said. "Families and other caregivers deserve clarity when making such decisions, and this bulletin is intended to provide that clarity."

The bulletin does not change existing laws regarding the role of surrogates in making healthcare decisions, but it will help to ensure - in clear and certain terms - that healthcare providers consider a family's wishes when determining medical treatment for adults with special needs, Nardone said.

The bulletin accomplishes two significant objectives:

• It summarizes and clarifies numerous laws dealing with healthcare decision-making for adults with special needs, giving families a better understanding of their role in caring for a loved one.
• It affirms that the family of an adult with special needs can make medical decisions on that person's behalf without having to seek authorization from the courts.

The clarifying bulletin has been named "Aimee's Bulletin" by some advocates for adults with developmental disabilities in memory of Aimee Sandler, a Montgomery County woman with severe physical and mental disabilities who died in 2009. Her sister, Abigail Sandler, was a driving force behind the efforts to clarify rules for care of adults with special needs.

During the last several years of her life, Aimee's medical treatment was the subject of disagreement between her family and her healthcare providers, leading to undue stress and tension for all involved, Nardone said. The bulletin will help ensure other families do not have to endure such difficulties.

The clarifying language – formally called the Procedures for Surrogate Healthcare Decision Making Bulletin – will become effective on Jan. 15.