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Abigail Sandler, Lafayette Hill, and a group of passionate advocates on the local and state levels believe no family should have to endure a struggle against health-care providers when it comes to making a life or death decision for a loved one.
Inspired by Abigail’s younger sister, Aimee, who suffered profound physical and development disorders during her life, the group has spent the past four years pushing for the Procedures for Surrogate Healthcare Decision Making Bulletin, which will be made official this summer.
The bulletin will clarify existing Pennsylvania legislation regarding families’ rights when advocating for a loved one with special needs. One of the major components, and the one most important to Abigail, is that a health-care provider being paid to care for an individual may not participate in life or death decisions, she said.
If an individual is declared incompetent, either a family member or a guardian will be assigned to make decisions for the individual, not a health-care provider, such as a group home, she said.
“We arrived at a policy that is pro-family, that is pro-consumer, that makes it very clear that, in the final analysis, decisions about health care and life decisions are best made in a family environment,” Pennsylvania Deputy Secretary for Development Programs Kevin Casey said at a press conference and celebration at Keystone House, Wyndmoor, May 27. “They are best made with family present and making the decisions.”
Frequently in Pennsylvania and other states, the rules regarding surrogate care have been contradictory, allowing for health-care officials to ignore family issues, which happens far too often, Casey said. The problem with unclear guidelines is that they lead to inconsistent practices, he added.
The team, which included Casey, Abigail and Gail Inderwies, president and CEO of Keystone Hospice, began its work in 2006.
It appears the bulletin will be certified by the end of June, Casey said.
Aimee died at the age of 52. She loved music and the color red. “Sunrise, Sunset” from the musical “Fiddler on the Roof” was played at her funeral.
Her sister Abigail, six years her senior, knows firsthand the challenges of advocating for a disabled person.
Aimee became the poster child for everything that could go wrong within the system, Abigail said. Aimee was “medically fragile,” requiring many life or death decisions over the years, visits to emergency rooms and placement in group homes, she added.
She had suffered terrible pain from misdiagnosis and was at the center of a legal debate in which her older sister had to fight a group home against giving Aimee a feeding tube. The Montgomery County group home wanted to insert a feeding tube into Aimee after she had stopped eating, and when Abigail prevailed in court, the group home refused to continue to care for her sister.
After all was said and done, and Aimee had been living at Keystone Hospice for three months, a search through her medical records in March 2006 revealed she had gallstones and a chronic, severely diseased gallbladder, none of which was ever communicated to Abigail.
The gallbladder was immediately removed, and Aimee returned to eating her favorite foods — chocolate chip cookies and chocolate pudding — like a champ, Abigail said.
Aimee was well enough to leave the hospice and did not return until the days leading up to her death. She needed an aspiration tube, but it would have made her very uncomfortable, given the state of her body, Abigail said.
“I’m happy to share that no other Aimee within the great state of Pennsylvania will ever have to endure what Aimee endured at the hands of a broken system,” Abigail said. “I believe going forward the new procedures for surrogate health-care decision-making absolutely avoid any confusion or misinterpretation around the end of life decision-making process for special needs individuals.”
After challenging the health-care providers on Aimee’s behalf, Abigail and Inderwies stormed into Casey’s life four years ago with the goal of making Aimee’s legacy one that would protect the future for developmentally disabled people.
“Her undue and great suffering made us realize other people should not suffer,” said Inderwies, who lost her own brother to a developmental disability during her childhood. Inderwies is also a member of the Springfield Township School Board.
“Hopefully this will be the beginning — because I believe we are not done yet — the beginning that will stop some of this undue suffering of people who are very special and need us to protect them,” she said.
At the end of the ceremony, Abigail unveiled a bench in the Keystone Hospice garden engraved with Aimee’s name in hopes, she said, that it will bring healing to those who live there.
