Hospice for Children
May 17, 2019 4:04 PM   Subscribe

So many people say "I want to die at home, peacefully." But every single time I read about pediatric hospices, parents are quoted as saying "I can't let my child die at home, we can't have that memory in our home."
posted by Hypatia at 4:25 PM on May 17, 2019 [2 favorites]

posted by TedW at 6:02 PM on May 17, 2019 [2 favorites]

One aspect of becoming a parent I did not fully appreciate is the unbelievable pain even contemplating stories like these cause.
Anything that would ease the pain of actually experiencing it is something good.
posted by vorpal bunny at 7:32 PM on May 17, 2019 [10 favorites]

Where Should a Child Die?

With all my being, I dispute the premise of this question. And I cannot possibly read this article.
posted by If only I had a penguin... at 8:50 PM on May 17, 2019 [1 favorite]

With all my being, I dispute the premise of this question.

The article actually addresses how the reluctance to consider children dying makes it more difficult for these facilities to be established.
posted by schroedinger at 9:26 PM on May 17, 2019 [28 favorites]

Thank you for posting this. This was a very well-written article that hit home. Pediatric hospice sounds like an ideal situation for end-of-life care for children who are unfortunate enough to need it.

It seems like another, and the main, reason we don't have them in the US is - surprise! - insurance. “If we had a lot of money for these hospice homes, as they do in England,” says Feudtner, the University of Pennsylvania professor, “then there’s no doubt they’re great.” His concern is that they’re expensive and not sustainable in the current American health care context.

That we still call it health "care" in this country is almost laughable.

Maryah didn’t want to die in the hospital, though. (And insurance wouldn’t cover that stay even if she did.)
This especially made me say "what the fuck" - why won't insurance cover the last hospital stay for a 15 year old who is dying? This is baseless evil. Health "care" my ass.
posted by sockermom at 9:40 PM on May 17, 2019 [16 favorites]

Gosh, that was hard to read.

I think I can stand anything life throws at me. But when it comes to suffering, sick kids, I lose it.
posted by james33 at 4:24 AM on May 18, 2019 [1 favorite]

That was so difficult to read, but I am so glad I did.
posted by gryphonlover at 10:32 AM on May 18, 2019

Disclaimer: I work for Hospice UK, an umbrella charity that supports 211 hospices, including the children's ones mentioned in the article.

Picking up the funding point: the article kind over-simplifies when it says 22% of children's hospice funding comes from the NHS, while the rest comes from "philanthropic sources" which makes it sound like big donors stumping up seven figure sums. The reality is that about a third of funding comes from the public, either through small donations, fundraising events or purchases from hospice charity stores - it's a lot of small sums. The rest comes from local or national corporate partners, local charitable bodies and yes, a few very generous individuals. We're grateful for every penny.

But after nearly a decade of austerity people have less money in their pockets, and so many hospices are facing shortfalls in funding (e.g. see this report based on some research we did among our members earlier this year). And as charities they have limited reserves to keep within guidelines, can't borrow or raise funds the business can, and so things can go south financially very quickly.

So don't think that the UK has solved the problem - we haven't. Hospice UK estimates that about 1/4 of the people who could benefit from hospice care don't get it because of a lack of resources local to them. It's less brutal than an insurance-based system, but we've recently seen the first instance of a UK hospice closing due to lack of funds, and nobody wants to see it happen again.

And circling back to the original question: about 80% of people (adults and children) receiving hospice care die in their own homes by choice. It's more complex when a child is dying, but the goal is wherever possible for someone to die in the place they want to be.

Tl,dr: Great article, but don't think the UK has solved the funding issues.
posted by YoungStencil at 10:33 AM on May 18, 2019 [19 favorites]

Came here to make much the same point as YoungStencil regarding hospice care in the UK, and funding issues.

And also hospice care extends outside the hospice, usually called "hospice at home". I've met people who are part of Scotland children's hospice at home, and it's being there for the little things as well as the big things - like the hospice at home nurse who took in a family guinea pig for three weeks while the child went down to London for some very specialised treatment. Just that one thing, of knowing that a beloved pet was being looked after (they couldn't find anyone else who would look after it for them) made such a difference.
posted by Vortisaur at 8:08 AM on May 19, 2019 [1 favorite]

Couldn't finish it. Just couldn't.
posted by prepmonkey at 7:54 AM on May 20, 2019

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