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 haven't had a chance to read all the posts yet, but we had a huge discussion about this situation at work yesterday. My first impression is that this child and her parents would choose for her to liveif that were a choice, but that isn't one of their choices. The child will die. Her death might be prolonged, but she will die. The child (and her parents) may not really understand death, but she understands suffering. That is what she is choosing to stop. She doesn't want to suffer any more. How much suffering is enough for a terminal patient? As nurses, have any of you watched a terminal patient in prolonged suffering and thought "that is enough"? If it were your child (mother, father, spouse), how much suffering is enough​?
I don't see anything wrong with the situation. Does she truly understand death? No. Is she old enough to understand the concept of religion and the possibly of an afterlife? Probably not. I do think the parents are helping her to be less afraid for the imminent end that is looming in her near future. And I personally agree with the decision for her to come home and receive hospice-like treatment.
This is a very difficult one for me. I agree with the end decision completely. I think kids who are extremely ill are often far more mature than other children of the same age so I am ok with her at least being asked and her wishes considered. I don't necessarily think 5 is old enough to comprehend or be responsible for such a choice, and I think as many before me have mentioned you could put any number of pleasant things in place of "heaven" and most reasonable child will pick that over the hospital.
But my overwhelming feeling is that I am so relieved that I've never been in the position her parents are in, and at the end of the day they are trying to deal with something that most of us will hopefully never have to face. And I don't want to judge them because I can't even imagine the loss of one of my children.
Like another poster said, this isn't about a five year making a health decision - this is about two parents who are withdrawing care. They have projected their own feelings on to this child and that is what we are seeing in the press. That being said, they are her parents. This is a terminal child, and this is a choice that they should be able to make without the guilt. But as a society, we will see that choice as giving up - so they have put that choice on to their own child. It's her decision. So now she can suffer the guilt. I see it all the time, and it's ok. But it is what it is.
Mom is a physician, dad a fighter pilot. These are not uneducated folk. We have the technology to keep a person's heart and brain alive far longer than a person lives. This girl has made an informed decision, she has decided to live, as opposed to be alive. The words are succinct and at her level. I advocate for a dignified death, that does not involve euthanasia. Let's be brutally honest, people say they are afraid of the pain, but we know that pain management now has taken that out of the equation, people are afraid of dying, plain and simple. I can tell you that those with the most dignified deaths are those that have a faith that they are assured of their destiny. News flash people, most religious views don't have ANY assurance. That is why people feel this girl is being manipulated, but what if, what if this girl has matured beyond her years, what if she does have a relationship with a higher power that gives her peace in this horrible place? I will go out on a limb and assume that many here were triumphing the woman who faced her death with the (IMHO) cowardly out of killing herself, yet this girl courageously faces her mortality by deciding to live every day instead of being kept alive and you judge? What right does anyone have to see life through her eyes? Just because we can keep people alive doesn't mean it is what is best for that person, and that is not for us who have a "better" guarantee on tomorrow to judge.
I believe that all patients should be able to make an informed decision about their health. In this case, she has been lied to that there is this "heaven" place that you go to after you die. If she knew that dead bodies simply decompose underground (or get cremated), she might have chose differently.
I have a lot of things I would like to say to this, but I will limit myself to one comment: Shame on you. There is a reason why even those who have doubts avoid militant, hateful atheists. You can always count on them to leave you with a little less faith in humanity.
As a Mom who had to make decisions surrounding end-of-life care for a toddler with a progressive neuromuscular disease (Leigh's), I truly wish that my child had been able to indicate something, anything, regarding her perception of QOL. Unfortunately, she experienced a rapid cognitive decline just after her second birthday. (Prior to that, she was close to age-appropriate cognitively but had always been non-verbal and blind.)
We enrolled her in a palliative care program, decided not to initiate invasive ventilation even though she was a candidate, and planned that her only admissions would be for "mechanical issues," such as replacing Broviacs or adjusting her VNS. We hoped to care for her at home in her final days, with support from pedi pall/hospice, depending on whether we were continuing TPN at the time. (She had been on TPN for nearly her entire life, after developing GP and CIPO, rendering her G and J tubes useless except for drainage/decompression.)
Unfortunately, nothing went according to plan. She had her Broviac replaced because it had split. The trauma of the surgery started a full cascade of complications, from DIC to ARDS to ARF. We were unable to evaluate brain function while she was on a HFOV, and she couldn't even tolerate BID suctioning with pre-oxygenation and the quickest bagger/suctioner in the PICU. She
When the PICU staff recommended ECMO, I knew that there was no way I could put her through that. We invited family and friends to come and say goodbye, and she was in my arms as we withdrew support. The only "positive" that came out of her demise at the hospital was that the pathologists were able to obtain lots of samples of muscles and organs for research purposes. One of her "unknown pathogenic mtDNA defects has been confirmed as a marker for maternally inherited myopathy with chronic respiratory failure.
IMO, End of Life plans are in the same category as Labor and Delivery plans:nice idea, but don't think it's the way everything is going to happen.
In addition, I agree with whichone'spink's post: palliative care can significantly prolong life simply by removing the child from the risk of iatrogenic infections and the stress of a hospital stay. (This is coming from a Hospice Flunkie who is alive and well, working and playing, earning my M.Ed, growing old with my Hubby and watching my two other kids grow up, several years after my "expiration date." [emoji41])
I'm so sorry for your loss. I can't imagine going through something like that. Thank you for sharing your story.
I believe that all patients should be able to make an informed decision about their health. In this case, she has been lied to that there is this "heaven" place that you go to after you die. If she knew that dead bodies simply decompose underground (or get cremated), she might have chose differently.
And who are you, or any of us for that matter, to question their faith and their religion?
I personally have my own issues with the Catholic church, however I have had a loved one, a 5 year old (family friend, with an incurable brain tumor), wrap his little head around the idea of God and Heaven, as his family has those beliefs. He had remarkable insight and knew that when he went to (his) Heaven, (he would look upward) and know his Poppa was there. His grandfather had died the year before. He understood the permanence of death.
He certainly was living in a hellish state of pain, dizziness, hospitalizations, procedures etc. So unless we have been there, I don't think ANY of us can really say the child does not get it.
Specializes in Medsurg/ICU, Mental Health, Home Health.
In this case, she has been lied to that there is this "heaven" place that you go to after you die. If she knew that dead bodies simply decompose underground (or get cremated), she might have chose differently.
Hmm, I'm not going to argue over the realities of a Heaven.
But isn't it true that your version also results in no more pain, no more suffering? Perhaps that in of itself is Heaven, no?
It comes in really high doses when I am the one administering it.
You believe your personal opinion is "reality". So does everyone else! And everyone is entitled to their opinion. There is no law requiring parents must teach children a certain belief system. It's a little presumptuous of you to assume only you are correct.
dec2007
508 Posts
I haven't had a chance to read all the posts yet, but we had a huge discussion about this situation at work yesterday. My first impression is that this child and her parents would choose for her to live if that were a choice, but that isn't one of their choices. The child will die. Her death might be prolonged, but she will die. The child (and her parents) may not really understand death, but she understands suffering. That is what she is choosing to stop. She doesn't want to suffer any more. How much suffering is enough for a terminal patient? As nurses, have any of you watched a terminal patient in prolonged suffering and thought "that is enough"? If it were your child (mother, father, spouse), how much suffering is enough​?