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Hospice not available for Triangle's terminally ill children

Posted July 30, 2015
Updated July 31, 2015

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— About 1 in 285 children in the U.S. will be diagnosed with cancer before their 20th birthday, according to the American Childhood Cancer Organization.

The Triangle is renowned for its cancer research and treatment, but health advocates say there is a serious lapse in care for the youngest terminally ill patients living in the area.

Pediatric hospice care is available in Greensboro, Burlington, Asheville and Asheboro, but not in the Triangle. Diane Moore has been fighting for hospice care in the area ever since losing her 8-year-old daughter Colleen to bone cancer seven years ago.

“You would think in Wake County, our state capitol, that we would have this,” she said.

Moore says her daughter suffered because of the lack of hospice help.

“My daughter was filled with a lot of fear during the last 48 hours of her life. She had oxygen hunger, and she was terrified,” Moore said. “To go through that oxygen hunger, that could have been avoided if she was given the right amount of morphine. I wish that she didn’t have to go through that.”

Elissa Gaus asked about hospice care for her 10-year-old son Micah, who was diagnosed with brain cancer at 4 ½, after doctors said there was nothing more they could do to help him. She was surprised to learn hospice does not serve children in Wake County, where they live.

“This brain tumor, the latest one, is growing rapidly and is causing seizures and more discomfort than all of the other ones he’s had,” Gaus said. “I’m honestly not sure what the next step from here is.”

Tim Rogers, CEO and president of the Association for Home & Hospice Care of North Carolina, says, on average, less than 1 percent of hospice patients in North Carolina are children.

“I believe that the quantity of need for this service has not presented itself,” he said. “But, still, in a society where the need is one, it’s a need.”

Transitions LifeCare, formerly known as Hospice of Wake County, will soon be the first to serve terminally ill children in the Triangle. It plans to launch a program in September, but it will be very limited. Funding will only cover the care for 10 children in the first year.

“I just wish it were available now,” Gaus said. “You would think that there would be these services available to make it easy on us, because at the end of life you shouldn’t have to be dealing with this.”

10 Comments

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  • Brian Jones Jul 31, 2015
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    WRAL: Your article is full of personal emotional stories...........Now give us some facts: Why does Burlington (population 51,000) have pediatric home hospice, and Raleigh (population 431,000) not have pediatric home hospice?.......Does it have something to do with lawmakers?

  • Brian Jones Jul 31, 2015
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    These are very good points.......Why would a company provide pediatric hospice care in a small town like Burlington, but not in Raleigh or Durham? Evidently this pediatric hospice care is not against state law.......The article could state why, if they are really news professionals..... If pediatric hospice care was legal in Raleigh/Durham, I am sure a businessman would provide it. Hospice is a huge industry......If pediatric hospice is illegal. Who voted against it.

  • Kristin Byrne Jul 31, 2015
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    You are missing the point completely, or you obviously don't know what hospice care entails.

    None of the parents said they couldn't pay for hospice or expected someone to take care of them. They were talking about how it was unavailable PERIOD. Not in Wake County. For anyone, regardless of ability to pay. It wasn't a matter of not being to afford pain medicine. It was a matter of not having the medical personnel at the bedside to administer the pain meds. Morphine isn't something you can pick up in a pharmacy.

    And I'm not arguing against anything. You were missing the point.

  • Joe Welch Jul 31, 2015
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    You obviously have no idea what Hospice care is. It's NOT a Government program. It is highly skilled, dedicated medical professionals who provide end of life care. Are you so heartless as to blame the parents of a dying child for not saving money? The communities listed in the article have Hospice care specifically for those communities. I dare say anyone, ANYONE with a child who is terminally ill needs help from a Hospice Care provider. Not free- not a program- not a handout... Just simple human compassion. A trait you may want to explore before you blame the lack of care on the parents inability to pay.

  • Brian Jones Jul 31, 2015
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    You are arguing against the fact that parents should earn money, and save that money to provide for their family.......It is a parent's moral duty to have saved the money; ready to provide at pain medication (even just 2 days worth) for the child they brought into this world.......And have that money set aside; don't rely on some insurance company or government entity......This is only being stated because; one single reading parent might realize that they need to save money instead of spending it.

  • Kristin Byrne Jul 31, 2015
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    Who is to say someone has time to move somewhere that provides hospice care? When my grandfather passed, he was told on a Tuesday that hospice was the best course of action. He went into hospice that day, and passed just a couple days later. There was no time to move to another county. That's ridiculous.

  • Brian Jones Jul 31, 2015
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    These people and their situations are perfect examples of why persons should earn money, and save money . With money you can move to a county with hospice care. Yes save money; so that you don't have to rely on someone else to take care of your responsibilities..............It is very disturbing that a parent didn't obtain the the pain medication that their child needed.

  • Walter Smirth Jul 31, 2015
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    How is hospice different for children than for adults? Hospice is one of the great compassionate treatments for adults at the end of their lives. Why not extend that to children--sad as that is.

  • Kristen Miller Jul 30, 2015
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    http://www.youcaring.com/elissa-gaus-402516

  • Kristen Miller Jul 30, 2015
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    If you would like to support Micah and his mom Elissa please visit their fundraiser page here: http://www.youcaring.com/elissa-gaus-402516#.VbmcE3Wt-M4.facebook . Thank you for all of the love and support.