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.
Funny. Since Julianna has stopped going to the hospital, it's been 1 year since she got an infection. Sometimes palliative care adds a little more time to someone's life because they're not putting themselves or loved ones through the rigors of a hospital stay.
Wow that's a difficult situation, I don't think anyone can truly know what the right answer is unless they are in that situation. We can all sit here and say what we think back and forth for hours but none of us will get it unless it's us and our little girl! Anyways just my two sense!
Specializes in Early Intervention, Nsg. Education.
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])
As long as this doesn't lead to policy making I don't have a problem with anything the parents are doing.
I wish most sick kids, or any kids for that matter, had parents like that.
And I envy their belief in heaven. I would certainly feign a belief in heaven for my young child.
And while I don't believe a child that young can make an informed decision re future events, I don't see anything wrong with talking to her about it and then making the best decision for her as it comes.
Maybe it will help ease some fears when the time comes, how are we to know anyway?
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.
Giving the girl the "choice" serves as a way for the parents to confirm their decision with less guilt or self doubt. Their daughter does not want any more hospitalizations, she wants to be home, she knows she will die, and believes she will go to heaven. All of that is immensely comforting to the parents.
I agree the one who benefits the most is the parents, rather than the child. I don't think that is a negative thing. End of life care is just as much about the well being of the family as it is the patient.
I doubt this sets a dangerous precedent for all children to be actively involved in all choices their parents make on their behalf. We aren't talking about discontinuing chemo for a cancer with a good prognosis after treatment. We aren't talking about a child wanting to eat hamburgers and French fries for the rest of their life, or a child who never wants to go to school. We are talking about a definitely dying child and her parents reaching the decision to enter palliative care.
Specializes in med-surg, IMC, school nursing, NICU.
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.
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 thought the same thing when I was reading this. I understand this little one is probably wise beyond her years but no 5 year old talks like that.
I agree with a lot of the PPs by saying that, in this particular instance, death was inevitable. This little girl, who already suffered so much in her short life, was going to die. There was no stopping it, only prolonging it. So really, the choice isn't "Heaven or hospital" it's "now or later" with a lot of undue pain in the meanwhile.
Regardless of whether or not we agree with the word choice this mom used in discussing the "options" with her child, I think that any vernacular that will ease the transition to death for this little girl should be used. Like so many of us said, she is going to die no matter what. Why not say what she needs to hear to feel better about the terrible fate she has been served?
To a previous poster who said that kids can't possibly understand death: Decades ago I was working on a pediatric oncology unit and have a 5 year old who wanted to make sure that a younger sibling "inherited" a certain toy. Really, do adults understand death any better? A 5 year old never asked to have "everything done" even though any intervention, except comfort measures, would be absurd. Why should a child be subjected to futile procedures because he/she doesn't have the vocabulary to say "comfort measures only." This little girl is lucky to have a mother who is a neurologist and who wants a peaceful death for her daughter.
Specializes in Adult and Pediatric Vascular Access, Paramedic.
Another point is this: Some five years would not understand the permanence of death, but those are the five year olds who aren't looking it in the face.
According to every source on child development I can find, 5 year olds are well within the normal range for understanding the permanence of death, and I'd be willing to be a five year old with a terminal condition has a better understanding of human mortality that most adults.
From the description, it sounds quite possible that the child's terminal condition has progressed to the point where generally people are actually better off avoiding hospitals. Current evidence shows that when patients in the later stages of a progressive, terminal condition chose to avoid more aggressive treatments, including hospitalizations, in favor of a larger focus on comfort, they are not only more happy but actually live longer. So I'm not sure why it really matters why or who is making the decision when there's not really much downside to the choice being made.
I read this article the other day and the reactions are pretty much what I expected. I'm going to guess that a significant number of people here don't work in pediatrics.
I have worked in pediatrics my entire career, primarily in oncology. I HAVE had conversations with children this age (and younger) who understood death. A chronically ill 5 year old has a different understanding of the world than a typically developing kindergartener who's never even had a pet die. A sibling who's watched her sister suffer, who's seen her sister's friends from the clinic die, understands more than her classmates.
I can think of several cases off the top of my head where a child was dying. The parents weren't ready to say "enough is enough" and in all of these cases, just before a new treatment or a phase I trial was about to start, the child just died. I view this as the child making the choice the parents couldn't- it was time to stop. These kids were as young as 22 months old and as old as teenagers. Cindy Crawford actually spoke to Oprah a few months back about a similar scenario with her younger brother: How Cindy Crawford's 3-Year-Old Brother Helped Her Come To Terms With His Death
Earlier this year, I had a patient with rapidly progressing Ewing's Sarcoma. On a Tuesday afternoon, he was made a DNR and started on a morphine PCA. Plans were made to send him home the next day on a PCA with hospice. I came in early the next morning to get everything arranged/to get things moving to get the home supply of morphine delivered to the hospital. When I arrived I found out that he had died around 11PM the night before. He didn't want to die at home, that's how I interpreted that one.
Kids understand more than we give them credit for. I had a 6 year old patient earlier this year (multiply relapsed rhabdomyosarcoma) who verbalized that he understood that he was dying long before DNR/terminating treatment discussions had even been had with his parents. Actually, shortly after he verbalized that he thought he was dying, new mets to his brain were discovered. He knew before anyone else. And he did die a few months later.
I have the utmost respect for parents who are able to say "enough is enough". And if a child says it, I have the utmost respect for parents who are strong enough to listen.
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 too am not a "believer", but I also don't find the degenerative nature of her disease to be one I would want my child to "live" with. If I was facing their decision my choice would have nothing to do with the after life and everything to do with the present standard of living. We get too wrapped up in the whole "God" complex (for or against) and forget about the actual present living circumstances (the same thing can be said for the abortion debate). So often we are so determined to be RIGHT about a hot button topic that we forget the person at the heart of the issue. If it was myself, at some point I would stop treatment as well. Not because I know God has some magical kingdom where I can play with my childhood pets or see all of my long gone relatives, but because at some point the "life" I am living really isn't much of a life at all, with little "living" actually being done.
whichone'spink, BSN, RN
1,473 Posts
Funny. Since Julianna has stopped going to the hospital, it's been 1 year since she got an infection. Sometimes palliative care adds a little more time to someone's life because they're not putting themselves or loved ones through the rigors of a hospital stay.