General Question

ChocolateCoveredStarfish's avatar

When is it time to let a terminally ill child go?

Asked by ChocolateCoveredStarfish (222points) June 23rd, 2011
19 responses
“Great Question” (10points)

A friend of mine asked me this question and wanted to know my opinion. I’m kind of stuck. Her almost 5 year old son is currently in the ICU with septic shock. He was born with a hereditary form of kidney cancer and has had AML leukemia and a rare liver tumor. He was finishing up his latest round of chemotherapy, a new regimen, and developed a nasty infection. He is in a lot of pain, organs are failing due to the septic shock and he is very very ill. I know what I would do in her situation. But I don’t know her all that well, I met her at a cancer conference not too long ago. She has asked my opinion on many things, and while I have no problem offering her support and someone to talk to, I don’t want to influence her in her choice to keep her son alive or not. I’m not sure what to tell her. Any suggestions?

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Answers

SpatzieLover's avatar

If indeed his organs are showing signs of failure, then it is most likely time for her to ask the hospital for palliative care only. He should not be in pain during his final hours.

My thoughts go to them.

JilltheTooth's avatar

You can’t answer that, beyond telling her that you’ll support her in whatever she decides to do. Maybe she needs to talk through the process of the decision and needs an ear. It has to be the family’s decision, even offering a yay or nay opinion would be inappropriate in such a horrific circumstance.

I am so sorry your friend is in this position.

tom_g's avatar

I can hardly even read this question without feeling sad and nauseous. I can’t even imagine what they are going through right now.
My only suggestion might be to just be there for your friend. I would imagine that this is a decision that she will have to make. If she feels supported by friends and family, it may free her up to make the right decision.

EDIT: What @JilltheTooth said.

Seelix's avatar

This is a slightly different situation, but a few years ago the 20-ish son of a family friend was hit by a car and, though I’m not certain of the exact nature of his injuries, he had some brain injury and was at least partially paralyzed, and was in a coma for 16 months. During that time, his parents often wondered whether they should keep him on life support. They did, and after nearly a year and a half, he woke up.

It’s been a couple of years since he woke up. He’s not the same (personality-wise) as he was before the accident, and he can’t walk unassisted, but he’s alive and he’s happy.

Stranger things have happened.

Your friend and her family are in a tough situation – if they decide to keep the little boy alive, that’s up to them. If they decide to let him go, that’s up to them as well. I suggest you explain to your friend that you’re willing to listen and offer support, and keep it at that. If she wants advice or opinions regarding whether to keep him alive, politely decline and explain that it’s not your place and that whatever decision she makes will be made with love.

wundayatta's avatar

I have this tendency to give up too soon. Or in the wrong situations. I’ve written people off only to see them reappear again. And then disappear again.

Kids are amazingly resilient. Even though things look really bad, he could pull through. I would, as Jesse Jackson said, “keep hope alive.”

ChocolateCoveredStarfish's avatar

Thank you for the answers… I agree that I shouldn’t say anything when she asks for my opinion. It just didn’t seem right to me, I am young and I don’t have children so I don’t really know how she feels. But I still want to be there for her. I think in her heart she knows what to do, she’s been saying a lot lately that she hates seeing him suffer and not get any better. I think she’s just looking for someone to tell her that it’s okay. She’s a young single parent and doesn’t get much support at all from the child’s father.

SpatzieLover's avatar

Does the hospital she’s at offer a child-life specialist? (Usually these are offered to those with terminal illness…it’s a hospice coordinator for children, not for the parent).

ChocolateCoveredStarfish's avatar

@SpatzieLover, he is treated at a great hospital in Canada, and I’ve never asked but I believe he would have a child-life specialist (I did when I was treated there.) I know there is a woman who comes in for ‘therapeutic play time’ and also talks to him about what is going on in his body. I assume she would be a child-life specialist.

Coloma's avatar

I agree with @SpatzieLover

Such a hard call, but surely the attending physicians must be able to offer an educated opinion on the childs odds of a full recovery from such grave conditions.

I am sure the family has much guidance in place already.

Dropping life support is one of the hardest decisions one can ever make for a loved one, but, dependent on the suffering involved, the odds of full recovery, or, at least a quality of life that is better than simply marginal, I’d opt for letting the child go.

I know how important it is to give ‘permission’ for an adult to leave us, there is much truth in that, in the case of a child whos tender age does not allow for full understanding of death, I just don’t know how to approach that, other than simply being with them in love.

My thoguhts go out to this family in their difficult time.

ANef_is_Enuf's avatar

This is a very personal decision.
Having experienced the loss of a sibling at a very young age, I have witnessed what having a terminally ill child can do to a parent. I believe that it is different for every person, and that it isn’t a decision that someone can exactly “give advice” for. Much as @Coloma said, giving “permission” can be beneficial to the parents as well. I have worked in hospice for several years, and have found that to be a really critical step for many people who are dealing with a loved one that is actively dying.
I’m very sorry that your friend is going through this, it never feels like it should be the way that things happen.

Mariah's avatar

I have had septic shock, and made a full recovery. Mine was caught before organ failure. I am so lucky. There is still hope for this poor child…it is horrendous that he is suffering so much now, but he just might make it through and get to have a pleasant life down the road. I’ll keep them in my thoughts.

RealEyesRealizeRealLies's avatar

I’m so sorry. At a loss for words.

livelaughlove21's avatar

Like the others said, it’s not really a question you can answer becaue this isn’t your child and I understand your hesitance to give her your input. I would just tell her that I can’t imagine what she’s going through and how hard this decision is and that you’re sure she’ll make the right decision for her son.

But for conversation sake, I find it sad that parents will let their children go through pain because they’re hanging on to some delusional idea of hope when it’s become obvious that hope is gone. This isn’t specific to your friend’s case, so no judgement, but there comes a time when you have to make a decision that is for the person lying in that hospital bed, not for yourself. I find it selfish to let a loved one suffer because you don’t want to lose them. I’ve never been in this situation, so it’s wrong of me to judge, but from an unbiased point of view, that’s how I feel.

Judi's avatar

I would tell her to trust her instincts. Mothers know their children better than anyone else. In just asking the question, I think she was seeking validation for what she already knows is right.

jerv's avatar

Organ failure sucks. My aunt had a liver transplant and was on dialysis. It was rare that she wasn’t hospitalized for much of the last decade of her life; one that was hard for her to enjoy. Always weak, often unable to even stand, drawing stares for looking like a ghoul…

Now, I don’t know the full details of this kid’s case, but I think that just bringing up the quality of life issue in a tactful manner will help her make the right choice.

MRSHINYSHOES's avatar

@ChocolateCoveredStarfish First of all, I’d like to wish your friend all the strength in the world at such a horrendous, difficult time, and wish her all the best. I have two little kids, and if something like that ever happened to either one of them, I’d be totally crushed. It’s such a difficult thing to decide, but only your friend can make that decision. Personally, if my little one was terminally ill and suffering badly, and if ALL other avenues had been taken without success (and I mean ALL), I’d let my child go, but not before conferring with my wife on the matter of course. If my wife disagreed with my decision, I’d continue to hold on. That’s how much I love my children. It’s a depressing thought, but I have to do what’s best for my child, and consider the state my child is in.

Once again, my very best wishes to your friend. ;)

creative1's avatar

If it were me faced with this issue I would weight the quality of life and the possiblity of him ever recovering from the illness. Where his organs are failing its not sounding to good that he will ever be able to recover from this. I think I would rely on all the doctors and hospital staff to give me the information and if they told me that he was suffering just for me and there was no hope I would let him go and give the family a chance to say their good bye’s and I love you’s to this brave young child who has been through too too much in his short life. I am sorry your friend is going through this tough tough decision….. What ever decision she makes she is the one who has to live with it. I would do more to refer her to the doctors and nurses providing the care to the child than to tell her to decide one way or the other.

Bagardbilla's avatar

I can not even fathom…
So… I will hold you and your friend and her child in Light.

blueiiznh's avatar

So sad. sorry to hear. prayers to them

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