Curative Hospice Care for Children

A New Bill Will Allow Terminally Ill Children To Receive Curative Treatments Along With Hospice Care.

by Mac Duffy

There are children who are suffering unnecessarily right in our own neighborhoods. It's not an easy thing to think about, but that's the bottom line, and they need your help.

According to Melissa Gilbert, actress and newly elected President of the Board of the Children's Hospice & Palliative Care Coalition, right now, in order for a child with a life-threatening illness to qualify for Hospice care, their parents must sign a paper stating that they understand that their child has been given a six-month end of life prognosis and that they will discontinue any curative treatment. "But, it's not like adults," she says. "When an adult is diagnosed with cancer and given three months to live, they may go four or five. Children are actually stronger in a lot of ways and (the majority) can handle things a lot differently, depending on the age. They have a sheer will to stay."

Coalition co-founder, Lori Butterworth, agrees. "Time and time again, when families get this level of support (from Hospice), the kids feel better, they respond to their treatment better and their chance of survival is higher." Sadly, if a family tries to go for new treatment, Hospice, their entire network of support, is taken away. To make matters worse, Coalition co-founder, Devon Dabbs, reveals that once "families make the choice to go on hospice, their child's name is dropped off the list for clinical trials" that might otherwise have dramatically increased their chances for survival.

Fortunately, parents have a new reason for hope. On September 19, 2006, Governor Arnold Schwarzenegger signed The Nick Snow Children's Hospice & Palliative Care Act, a bill that "will help kids live longer and have a better quality of life during treatment by having the Department of Health Services seek a federal waiver to allow children receiving hospice services to also receive curative treatments."

In September, we reported Melissa's passion for these children and her mission, alongside Lori and Devon, to get The Nick Snow bill passed. Now that the Governor has signed it, where do they go from here?

According to Devon, they now need to draft the waiver, seek approval from the Centers for Medicare and Medicaid, and then implement demonstration sites to test new methods to increase the quality of in-home care for serious ill children. Right now, very often what happens is that, when a child returns home from the children's hospital to their community, they may, and it's only a 'may', get a home health agency that provides them with some care. "But, that's 9 to 5, Monday through Friday," says Devon, "and (every parent knows) sick children don't stick to a schedule."

Approximately, 1.5 million children in this country have life-threatening illnesses and need this support, and there aren't nearly enough facilities to adequately provide it. Pediatric nurse and Palliative Care Specialist, Gay Walker, emphatically states, "People need to know that this is happening."

"We know this is really hard stuff (to face)," Lori continues. "(But) the thing that is important is that somebody needs to care for these kids (and their families). I think anybody would still want these kids to get the best possible care that they can."

"All of the children who receive hospice care will live well," shares Devon. The reality is that some of them will die gently, but some of them (who would have died without this care) will live better and they will live long because of this work." "Yes," says Lori, "we have saved lives."

"You need to, "put hope in a new place," says Gay. "You don't have to give up hope. You can continue to seek new therapies." Adds Melissa, "(but) sometimes what you have to start with is 'what I hope for is a really good today". So, how can you help these children start having a really good today? "Support us," says Lori. "It's simple. We have a need. You have a knack. (Whatever your knack is), our need is helping kids."

"There are powers in numbers," adds Devon. "In order to (take this statewide), we need people saying (to their representatives), 'Yes, we believe this is important.' This is what the government listens to."

"If the public will acknowledge that this exists," continues Melissa, "we will carry it. We'll do the work. We'll sit with the children and their families, but there has to be an awareness that this happens (and the support to take it further)."

Melissa is so passionate about this subject, it makes you want to jump up and lend a hand right away. I wouldn't expect any less. You can have money. You can have skill. But, when you put a Mom in the mix, there's a difference. I ask if any of her passion for the children she works with stemmed from the fact that she was adopted as a child, and Melissa's eyes light up as she realizes something she never thought before. "Ever since I've had children of my own, it's been a goal of mine to adopt a child. But (my husband, Bruce, and I) are really finished. We have four. They're grown. My husband and I want to have a life together and do all the stuff that we want to do...but part of me has always wanted to adopt at least one if not a few more children...and now I have."

Melissa tears up a bit and adds, "There's something about being around these children that fills me up. They fill my heart with fire. Children deserve a full life, no matter how long it is."

To find out how you can help, visit www.childrenshospice.org for more information.

Here's How You Can Help Right Now

In addition to offering your voice, you can go online to www.childrenshospice.org to buy special bracelets with inspiring messages. Also, in December, you can log onto their EBay auction. So far, they have an anthology box set of The Eagles' signed by The Eagles, bowling balls signed by Johnny Depp and George Clooney, bleacher seats on the red carpet at the SAG Awards, and a series of ten classes at Cardio Bar in Los Angeles with a private training session with Melissa's trainer and herself followed by lunch and a shopping spree. And, there's more coming in. It's going to be a huge auction with sports memorabilia, tickets to concerts, and more.

100% of the proceeds from the bracelets and the auction benefit children and the families of children with life-threatening conditions.