‘Families Are Desperate and Need This’

Countless Americans understand and have grown to count on the irreplaceable quality of care and support that hospice provides when a loved one is terminally ill or dying.

But there is a niche the palliative care program is looking to better serve: children.

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The Twin Cities, Minneapolis and St. Paul, Minnesota, are working to become home to the third children’s hospice in the country. KMSP 9, the Fox affiliate in the Twin Cities, reported that 700 children die in Minnesota each year alone and another 500 are diagnosed with life-threatening illnesses.

End-of-life care for kids, parents and caregivers say, is long overdue.

Seven years after her own daughter, Mary, passed away of a neuroblastoma, Christine O’Keefe is helping to lead the charge to get the new facility built. O’Keefe’s little girl was just three at the time of her death. O’Keefe told KMSP that children are so full of life and want to play, even when they’re that sick, that it takes a special place to accommodate them in their toughest period.

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A former adult hospice care facility is being converted into the new children’s hospice center. There will be six bedrooms, a specialized nursing team in place, and peaceful play areas for the kids and their families. While organizers are still millions of dollars away from reaching their goal, the new facility can’t come soon enough.

“Just on my way here, I got a call from a mom who asked [about this], as her son is dying at home,” said Katie Lindenfelser, who is helping to make the space a reality. “Families are desperate and need this home, so we’ll do whatever we can to bring it to fruition.”

Nearly 13,000 children up to age 19 die each year in the United States from an unintentional injury, and about 1,250 die of cancer nationwide. A discussion of hospice is not a conversation anyone wants to have; hope and healing are always the goal. But far too many families find themselves in this reality and are unsure of where to go to give their children the best possible last days if all other options have failed.

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O’Keefe added, “It just seems like this is the way you’d want to go out — in a nice, peaceful way, but also allowing [the children] to play until the very end.”

While many other countries have long embraced the palliative care needs of children, there are only two other specific residential hospice facilities for children in the U.S. — in San Leandro, California and in Phoenix, Arizona. Numerous children’s hospitals and communities do offer hospice services, inpatient units and programs, however. Families should always inquire what services might be available.

Related: The Man Who Takes in Abandoned and Terminally Ill Children

A recent study from the University of Pittsburgh found that patients who received palliative care had better quality of life and less severe symptoms than those who hadn’t received palliative care. Patients were also more satisfied with their care — and so were their caregivers.