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As 8 1/2-year-old Connor Scott Millard neared the end of his lifelong
battle with mitochondrial disease, he kept asking his parents to bring
him home from the hospital, back to “Connor’s house.” Connor’s parents
fought to allow Connor to spend time at home and questioned the medical
establishment that said it couldn’t be done due to the complicated
equipment and level of expertise needed to care for their son.
Their struggle showed their physician, Dr.Arun Chopra, who had been a
delegate and member of the CIR Executive Committee during his
residency, just how limited the options are for children with complex
needs. He decided to work jointly with the Millards to found a respite
house which will be named, fittingly, “Connor’s House.” It will be one
of just a handful of respite houses in the United States.
Dr. Chopra first got into palliative care as part of his ICU
experiences during residency at DC Children’s Hospital. His years as a
CIR member and officer also taught him how to advocate for solutions
that are “outside the box.”
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“The combination of what Connor’s life was and what Connor’s parents
had done for him—without any help — was sort of remarkable,” Dr. Chopra
said. “We were fortunate to be able to get him home,where he was able
to die at home with his parents.”
However, most families don’t have the financial capability or the
connections “to question the medical establishment and win,” Dr. Chopra
said. “A respite house is something that can take the amazing job
Connor’s parents did for him, and try to make that experience more
attainable for other people.”
Respite houses are widely used in England, but are just beginning to be
recognized in the United States as a valuable resource. Dr. Chopra
described the vision for Connor’s House as a safe place that’s not a
hospital and “that has a family feel to it.” It has a dining room, not
a cafeteria, and bedrooms instead of hospital rooms, but still has the
capacity to accommodate all of the life-supporting medical devices.
“There’s space for the family to sleep in the same suite or room with
their child, in a comfortable bed, not a hospital chair. There are
nurses around to help with giving medication or monitoring the
machines.But the nurses also don’t have to, which is different than a
hospital,” Dr.Chopra explained. “When you’re in a hospital, the
hospital takes over.”
It’s a model that Dr. Chopra and his colleagues hope will shed light on
ways to accommodate patient sat home—something that may require
substantial resources at first, but in the end can cost far less than
keeping patients in an institution. “It’s really only these families
who have these children with a million needs, that after years of
working within the health care system, they realize you can do things a
little differently,” Dr. Chopra said.
Connor’s House is currently in the fundraising stage and is also
serving as a support network for families with complex medical needs.
For more information, visit www.connorshouse.org.
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