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.
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?
The issue isn't parents wanting hospice care for a dying child. Of course home-with-hospice should be an option when indicated. The issue is the absurdity of asking a child to choose between "hospital or heaven".
There's probably more to this story than the article lets on, but that conversation at the beginning of the article is ridiculous and disturbing.
Not necessarily here, but non-medical folks wise- I wonder if the people saying a 5 year old's opinion should hold no weight would feel the same way if the 5 year old was saying she wanted to keep trying everything to live, and the parents were saying that it was time to be done and accept death?
I think the most telling parts are the parts of the article talking about her back sliding- going from needing bipap at night, to 24/7. Going from being able to sit up unsupported with a back brace, to not being able to sit up at all, going from being able to maneuver her wheelchair, to not being able to even use the hand controls.
On a totally unrelated note- I liked how the article quoted the nurse who had taken care of her frequently as well as physician opinions.
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.
The issue isn't parents wanting hospice care for a dying child. Of course home-with-hospice should be an option when indicated. The issue is the absurdity of asking a child to choose between "hospital or heaven".
There's probably more to this story than the article lets on, but that conversation at the beginning of the article is ridiculous and disturbing.
In this specific case, the little girl is terminal. What is the harm in giving her a "choice?". It's not a real choice, death is a certainty- no choice about it. She is going to die, her condition is rapidly declining. By allowing her input the parents reached a decision that I believe they would have made on their own. Even though they "let her choose", ultimately this was the parents decision. Legally, it was their decision. So what if they partially base their decision off her answer? Does anyone think they wouldn't have eventually reached the same conclusion?
Many family members (MPOA) will ask their loved one about what they want. Even when the patient is legally not able to make their own decisions because of cognitive impairment or decline. Knowing that "mom" says she is "ready to go to heaven" gives the family comfort and peace of mind with their very difficult decision to enter comfort care and withdraw medical treatment.
I don't see how this is any different.
The "choice" doesn't matter. She is dying. The family is grieving. This gives them comfort.
In this specific case, the little girl is terminal. What is the harm in giving her a "choice?". It's not a real choice, death is a certainty- no choice about it. She is going to die, her condition is rapidly declining. By allowing her input the parents reached a decision that I believe they would have made on their own. Even though they "let her choose", ultimately this was the parents decision. Legally, it was their decision. So what if they partially base their decision off her answer? Does anyone think they wouldn't have eventually reached the same conclusion?
Many family members (MPOA) will ask their loved one about what they want. Even when the patient is legally not able to make their own decisions because of cognitive impairment or decline. Knowing that "mom" says she is "ready to go to heaven" gives the family comfort and peace of mind with their very difficult decision to enter comfort care and withdraw medical treatment.
I don't see how this is any different.
The "choice" doesn't matter. She is dying. The family is grieving. This gives them comfort.
If it's inevitable, then why ask the girl her choice at all?
Maybe it's cathartic for the parents, but I don't see how it helps the little girl.
And presenting the whole thing as "respecting the child's wishes" sets a dangerous precedent. There's a reason we do not include five year old children in these processes in such a blatant manner.
That is a brave and smart 5 year old. Its comforting to know when she does die , heaven will gain a beautiful little Angel.
I can see where this choice between "heaven and hospital" can be a sticky wicket and this comment is an example.
I'm a believer in God and heaven but know that angels are specifically created beings and we don't die and become one. I'll acknowledge that this comment has always bugged me.
As a hospice nurse, I can see some of the reasoning behind what they are doing but in the end it should not be the child who takes this burden on but the parents. While children may have some reasoning abilities, parents (guardians) are the sole legal and moral decision-makers.
Specializes in Oncology; medical specialty website.
I haven't read all the responses yet, but the one thing that bothers me is this "conversation." I worked in peds. for several years, and I never came across a child who was able to have that type of conversation. She doesn't talk like a five year old. To me, this conversation sounds more like what her mother imagined it to be. It seems like there may have been a bit of literary license going on.
As far as whether or not a child of that age has the intellectual capacity to make that sort of conversation, all I can say is it conflicts with the growth and development of children we were taught as nurses. If adults have a hard time dealing with issues related to death, how could a child, who at that age developmentally doesn't fully understand the permanence of death?
I believe this mother believes she had that conversation with her child. I think it's how she's coping with the loss of her child. I just don't believe it's how it actually happened.
Specializes in UR/PA, Hematology/Oncology, Med Surg, Psych.
If this was my beautiful child, I would want her to leave this life surrounded by family, warmth, and comfort. I see nothing wrong with having difficult discussions about life/death with a terminal child; discussions one would never have with a healthy child. It is ultimately the parents decision, but being open and listening to the child is so important. Yes it does sound like the parents had pretty much decided that they would not pursue any further hospitalizations on their own and are somewhat leading the child to agree, I see nothing wrong with that. This child will die, and will die soon; no matter what. If this eases some of the parents guilt, that's just fine. If the parents are 'leading' her with rose-colored glasses, that's just fine too. I'd rather this child die with hope, comfort, and faith; than not. I think the parents sound like they are doing the very best they can for the child they love so much. Anything that can bring them all some peace is good.
I haven't read all the responses yet, but the one thing that bothers me is this "conversation." I worked in peds. for several years, and I never came across a child who was able to have that type of conversation. She doesn't talk like a five year old. To me, this conversation sounds more like what her mother imagined it to be. It seems like there may have been a bit of literary license going on.
As far as whether or not a child of that age has the intellectual capacity to make that sort of conversation, all I can say is it conflicts with the growth and development of children we were taught as nurses. If adults have a hard time dealing with issues related to death, how could a child, who at that age developmentally doesn't fully understand the permanence of death?
I believe this mother believes she had that conversation with her child. I think it's how she's coping with the loss of her child. I just don't believe it's how it actually happened.
I didn't read the article either. I like your post.
The truth is, "hospital or heaven" isn't really the option. "Heaven" is happening either way. The choice is between "going to heaven" from home, or from the hospital.
In this case, the little girl is dying. She's going to die whether or not she is treated for her next infection. And given her rate of decline as described in the article, it seems that she's going sooner rather than later - she's unlikely to get any more significant, quality, conscious-and-comfortable time with her parents during her next potential hospitalization. So why NOT give her the choice? There is no wrong choice here - it's up to her and her family. If her parents are truly okay with their child dying either in the hospital or at home, what's the difference to anyone else? Why not let this little girl do what she feels will make her happy? It's not like she/her parents can't change her/their mind if they're at home and things are too tough, or they're at the hospital and things are too upsetting or chaotic.
Now it would be an entirely different story if she wasn't dying anyway - if she had a curable disease. Kids that age aren't able to decide whether to live or to die. BUT given that this kid has had that choice essentially made for her by her disease, what's the big deal in letting her choose where to die, if it's okay with everyone else?
BrandonLPN, LPN
3,358 Posts
The issue isn't parents wanting hospice care for a dying child. Of course home-with-hospice should be an option when indicated. The issue is the absurdity of asking a child to choose between "hospital or heaven".
There's probably more to this story than the article lets on, but that conversation at the beginning of the article is ridiculous and disturbing.