5-year-old chooses heaven over hospital

[anh06005]

For those who haven't read it:

Heaven over hospital: Dying girl, age 5, makes a choice - CNN.com

It's a bit long but it is interesting. I was curious on everyone's take on it as I don't deal with these types of sick kids. I do think, though, that if the person seems to have a good grasp on what death is and what it means if they choose it over treatment they should be able to. While 5 does seem young she seems to understand it pretty well.

Thoughts?

[elkpark]

That is a brave and smart 5 year old. Its comforting to know when she does die , heaven will gain a beautiful little Angel.

Nope, that's a 5 yo who is sick of getting poked and suctioned in the hospital and thinks "heaven" sounds preferable. So would going to the circus. So would going to Nana's house. Nothing "brave" or "smart" about it.

[anh06005, MSN, APRN, NP]

I see both sides really. For those who oppose the parents:

At what point would you refuse further treatment for your child? When they are on the vent for weeks/months/years and have no quality of life? Or would you allow them to have a say on when they go when they have a progressive disease with no known cure? Allow them to go at home and keep them comfortable?

[Been there,done that, ASN, RN]

She doesn't "understand it pretty well". She is repeating what she has been told.

The choice ultimately will be made by her parents. That choice is unbelievably heartbreaking .. either way.

[KatieMI, BSN, MSN, RN]

It is not brave and smart. It is painfully desperate.

When I came in hospital yet another time at the age of like 6 or 7 with yet another anaphylaxis, I'd read a fairy tale similar to "Sleeping Beauty" and so imagined it all with me as a star of the show when it would happened "next time". Luckily for me, there were older kids in the unit, and so I found out that "next time" I will end buried in the cold earth and eaten by worms and before that I will be taken into "dead house" to be cut open by medical students. That was not as pretty as waiting into a crystal coffin for a prince galloping on his white horse, and so I started to pay attention to what I was going to put into my mouth.

[blondy2061h, MSN, RN]

No 5 yo actually "understands" death. The parents are going to make the decision, and, to me, it's kind of silly to pretend that they are honoring her wishes (although it's certainly convenient for the parents that she is telling them she'd rather "go to heaven" -- much easier for them than deciding to discontinue treatment on a child who wanted to keep living). We don't let 5 yo kids make much less momentous decisions, and there's a reason why. If this couple had a 5 yo who only wanted to eat ice cream from now on, or who didn't want to go to school, would they respect the child's "choice"?

They may not understand dying. They do understand choosing not to go to the hospital again. The death is inevitable soon for this girl regardless.

[verene, MSN]

I would hate to be in the position of these parents. That being said - I do support involving the child in end-of-life discussion. Maybe I'm weird but at 5 years old I actually had a very nuanced understanding of death, not the fullness of understanding I have now - but a very strong foundation of understanding was already present - and it is that same foundation that supports my current understanding.

While I didn't have to confront my own mortality at that age - I did have to confront the mortality of loved ones, both human and nonhuman, and I am grateful that my parents were honest with me and didn't hide the realities of illness and death from me or try to tell me that "she's just sleeping" or "your puppy's gone to heaven" or the other overly simplistic answers adults frequently give to young children, they listened to my questions and answered them the best they could even when that answer was "I don't know." They let me form my own understanding of death and what that means.

I admire the parents in the article for being willing to be honest with their daughter - that she has an incurable illness that will one day, sooner or later, take her life. I think children can sense that something is wrong, and if she as is ill as the article makes it sound then she likely has some sense of how unwell she is, how limited her current life is, and yes, even the fact that her life will end. Ignoring her awareness of her failing body would likely also ignore her questions, anxieties and fears, because there wouldn't be space to talk about them. Not taking about death and it being an option could potentially put a lot of pressure on her to live, to keep going, and being happy and not talk about her fears, for the sake of her parents.

That being said I'm not sure what I would do if this young child was my patient. I want to believe in the agency of children to have some say in their own life, but I also know that children do not always act in their own best interests. I would probably encourage dialog between parents and child, respect the child's input, but ultimately leave the decision in the hands of the parents.

I do think that quality of life needs to be a big part of the discussion. I think even more with children than with adults we want to fight and try absolutely everything to keep them alive but at what cost? At what point does it makes sense to stop trying to prolong a life that will always be tragically short? Sometimes the most compassionate option is to let go and let death come.

[MunoRN, RN]

Nope, that's a 5 yo who is sick of getting poked and suctioned in the hospital and thinks "heaven" sounds preferable. So would going to the circus. So would going to Nana's house. Nothing "brave" or "smart" about it.

In general I don't really think that spending a good portion of one's final time in a hospital, when all that's doing is contributing to and prolonging the suffering is either the "smart" or "brave" choice. I actually think that's pretty reasonable.

When I first read the story elsewhere, I assumed it would just be read as a glimpse into the difficulties of caring for a child with an incurable, terminal condition, it hadn't really occurred to me that there would be any disagreement about the choice, whether it's really the kids choice or the parents choice, to choose more time at home rather than in the hospital.

[Karou]

I don't think a 5 year old child can truly understand death, and to put it to them as die and go to heaven, or keep coming to the hospital (where she experienced pain, invasive procedures, fear, ect...) what kid wouldn't say heaven? Because of that, I don't normally think it's right for parents to let a child "choose".

However, in this little girls case, she doesn't actually have a choice because ultimately she will die young from her incurable terminal genetic disease anyway. In her situation, I believe it's easier on the family if they allow her some "choice" in the matter, they can let her go with less guilt. For the sweet little girl, heaven is something to look forward to, a small piece of comfort. It would be cruel to explain to her what death means (no more mommy and daddy or brother) or to tell her that some people don't believe in heaven. She is going to die anyway. Patients and families choose hospice and comfort care all of the time, and I don't view this as any different. To shame the family for involving her in this decision (ultimately, don't you think the parents would decide this on their own anyway?) only adds hurt, pain, and uncertainty to them over a very certain death for their daughter.

I feel so sad for the girl, and her family.

[AnnieOaklyRN, BSN, RN, EMT-P]

This is a tough one...

I think it is best to look at the whole picture, and that is that she is going to die no matter what anyone does, not at 60 or 70, but as a child.

One of the speakers had a good point that this isn't a child that could be cured by chemotherapy, this is a child who is terminal. When are Americans going stop rejecting death, in some cases death can be better than living, as in this case where this child is spending her time at home in a wheelchair/bed, unable to eat, unable to move, unable to do any self care. No one should judge these parents or this child until they step into their shoes, especially the five year olds shoes, and feel the pain they are feeling. In my opinion letting her go to "heaven", since that is what their faith teaches them, is far better than spending weeks in an ICU being put through painful needle sticks, bed sores, and becoming ventilator dependent!

Kudos to the parents for not being selfish and letting their child die in peace instead of while being poked and prodded in the healthcare system!

Annie

[KThurmond]

This situation is really tough. The girl has suffered so much already. 5 years old & can't do anything for herself. Nobody knows until they are in the situation themselves. Its a double sided sword. Let her live knowing shes unhappy and will never get better and only suffering more or let her finally get some peace? Both sides suck

[messymissy]

My thoughts on this are, the parents are coping with guilt of no longer providing medial care to prolong the inevitable death of their precious child. By letting their 5 year old make the choice, it won't be the parents making the decision. Discontinuing futile medical care has got to be a difficult decision for any parent to make. If the child makes the choice for the parent. Then maybe it alleviates some of the pain for these parents. I'm not saying it's right. But it's just my take on this story. My thoughts are with this family, it's truly a very sad story.

[Parakeet]

I beg to differ with some of the comments given. Though not many children today know what death is, some do. I have know little ones who are wise beyond their years. My little brother knows about death and the uncertainty of life.......and that he wants to go to heaven to be with Jesus when he dies.

I have not read the article, so I do not know what faith the family is coming from. I am not sure what stand I take, however, just because it is not common for children to know about death, does not mean that it never happens.