2yo boy taken off life support against family's wishes

[CrazyLurkerLady]

http://www.cbsnews.com/news/israel-stinson-family-in-shock-after-brain-dead-boy-removed-from-life-support/?ftag=CNM-00-10aab6a&linkId=28077331

This is very reminiscent of Jahi McMath. A 2yo boy had a severe asthma attack that led to cardiac arrest and he was declared brain dead. His family refused to accept it and got an emergency injunction to allow him to remain on life support while they sought out another neurologist.

A judge just ruled against them and the boy was taken off life support and allowed to "die" (in quotes because he has been brain dead for quite some time). I'm glad to see that Jahi's situation has not influenced judges to allow families to keep their deceased loved ones on artificial support indefinitely.

[Gossamer1]

I don't want to 'like' your post because the death of a child under any circumstances is tragic but, I'm glad common sense prevailed this time.

[ILoveJellybeans]

I am glad that this has been resolved, and this child's body will now get a proper burial and his family can get closure. Nobody wants to take their brain dead child off life support, but it is the right choice, its no way to live, sitting there with a dead body, hoping they will come back to life when it is impossible.

 

I wish the same would happen with Jahi McMath. Her mom seems to be enjoying this, but it must be awful for her poor siblings and friends.

[Glasgowghirl]

The correct decision was made the family in time will hopefully see this, I feel for them. Rest in Peace little man.

[Mercer]

In cases like this, I can't help but wonder if on some level they can't admit, the family is relieved to have the decision taken out of their hands so they don't have to be the ones responsible for making the call that they have to "give up on" their child who is dead.

I wonder that because I think that's how I might feel in that situation - that deep down I would just want someone else to step in for me, because it's such a huge and sad responsibility.

I hope I would make a different decision and understand that I need to say goodbye because I have really strong personal beliefs about the end of life, but even so, letting go of a child can't be easy.  

[VelociRapture]

@MercerI'll be a mom soon and I have only the deepest sympathy for this family and what they must be experiencing. I can completely understand why they fought the decision - it is a decision that goes against every single impulse a parent has. 

I am truly sorry for this family. Given the circumstances, I do think the proper decision was reached... But I don't blame the family for not being able to accept that now or (maybe) ever. I hope they find peace and healing one day.

[Terrie]

All I can think is "Good. This has gone on too long as it is." While it's terrible for the family, I just don't feel the system does them any favors by delaying things. 

[livinginthelight]

On 8/27/2016 at 4:23 PM, Mercer said:

In cases like this, I can't help but wonder if on some level they can't admit, the family is relieved to have the decision taken out of their hands so they don't have to be the ones responsible for making the call that they have to "give up on" their child who is dead.

Mercer, I think you nailed it.

I currently know of a very tragic situation where an (adult) child is on life support. It's very clear that he will never recover, though some friends are praying for a miracle. This person is not married and has no children, so it is up to the mother to make the decision. The mother gets that her son is, in essence, gone. She is also very clear that her son would never want to be a vegetable like this, and she wants to disconnect.

Why is she not pushing for it? Because of the very vocal faction of friends holding out hope. She recently told me, "If I push to disconnect him, they (the friends) will forever see me as a murderer."

The one thing she can't tolerate is the idea that people will see her as murdering her only son. I have so much sympathy for her. I told her I will be with her at any meetings. For now, we wait. I'm praying an infection will take him.

[HerNameIsBuffy]

My heart breaks for this family.  If this were one of mine...

Quote

“These doctors [are] telling you there’s no hope, but then you go and see your son and he moves to your voice and it brings you back up,” Jonee Fonseca, the boy’s mother said

I'd find pulling the ventilator impossible, too, at that time.  When stuff like this happens and people are so sure it is the right thing and it's good the court took it out of the families hands I marvel at how logical some can be in the face of tragedy like this.   And how trusting in the government to make the right decision.

I honestly have no idea what I'd do in that situation and pray I never find out.  

[Terrie]

26 minutes ago, HerNameIsBuffy said:

My heart breaks for this family.  If this were one of mine...

I'd find pulling the ventilator impossible, too, at that time.  When stuff like this happens and people are so sure it is the right thing and it's good the court took it out of the families hands I marvel at how logical some can be in the face of tragedy like this.   And how trusting in the government to make the right decision.

I honestly have no idea what I'd do in that situation and pray I never find out.  

Personally, I trust the three different doctors at two different hospitals who pronounced the child brain dead. And apparently, the judge does as well. And I grateful for that, because it's clear the parents were desperately clinging to false hope. That poor child had been dead for five months and they were fighting to keep a shell on life support.

[HerNameIsBuffy]

1 hour ago, Terrie said:

Personally, I trust the three different doctors at two different hospitals who pronounced the child brain dead. And apparently, the judge does as well. And I grateful for that, because it's clear the parents were desperately clinging to false hope. That poor child had been dead for five months and they were fighting to keep a shell on life support.

Everyone will have their own opinions of course, but referring to a child as a shell regardless of his medical status is chilling to me.  Clearly mileage varies on this.  

[meep]

6 minutes ago, HerNameIsBuffy said:

Everyone will have their own opinions of course, but referring to a child as a shell regardless of his medical status is chilling to me.  Clearly mileage varies on this.  

It's calling the child's lifeless body a shell. Any lifeless body imo is a shell. That lovely boy has not been in that body for a long time. 

[HerNameIsBuffy]

1 minute ago, meep said:

It's calling the child's lifeless body a shell. Any lifeless body imo is a shell. That lovely boy has not been in that body for a long time. 

As I said, mileage varies on this and clearly many share your opinion.  I personally don't feel qualified to decide when someone stops being a child and becomes a shell.  

(And they had a doctor tell them in May there was some brain activity.  Whether that was correct or not that was only 3 months ago and enough to give them hope.  I think it's unfair to compare the case to those who have been in such states without change for years.)

My mom passed after having been in a coma for over a week.  I'm fortunate that our ordeal was much shorter and she died before we had to make the difficult decision...but even so, to have heard her referred to as a shell, or anything that seperated her from her humanity before her physically death would have absolutely gutted me.

I am not in favor of keeping people in life support indefinitely with no hope.  I do believe removing life support is often the compassionate and medically correct option.  I just don't understand why the verbiage needs to be so cold.  Referring to him as a shell, saying its about time.  It feels unnecessarily callous to me.

This may well have been the correct decision, but I totally get how the family would feel it wsd too soon and idk if I could have gotten there in 5 months.  I'm not arguing that it should have been prolonged, obviously i don't know the details and am not a doctor...just that if this was in the best interest of the child it hurts no one to continue to refer to him as a child.

And he was.  He was their child.  Then he was their child in a coma due to brain death.  Now he is their late child.  

People can say what they want - I'm sure the family has seen and read much worse...the clinical coldness of such expressions always surprises me so I said soemtthing.  I not going to belabor the point, I'm just glad I didn't know anyone here when I was losing my mom.

 

[Coconut Flan]

2 minutes ago, HerNameIsBuffy said:

Then he was their child in a coma due to brain death.  

Coma and brain death aren't the same thing though.  I think that's kind of increasing the confusion. 

[HerNameIsBuffy]

8 minutes ago, Coconut Flan said:

Coma and brain death aren't the same thing though.  I think that's kind of increasing the confusion. 

For what I read vegetative state there is wake and sleep cycles although lack of consciousness.  You can be in a recoverable coma, but also one resulting from brain death in which there is a total lack of conciousness or chance of recovery.  In the latter they are the same..as the coma is the result of brain death.

if he was in a vegetative state, as the article wasn't clear, my point still stands as I was assuming irrecoverable coma.  It costs nothing to refer to people as human beings regardless of their state of conciousness.

ets link

http://www.merckmanuals.com/professional/neurologic-disorders/coma-and-impaired-consciousness/brain-death

[bingbangboom]

How very painful for all involved. My heart goes out to the family and loved ones. 

 

[Coconut Flan]

I would hope that how people refer to a patient or the deceased in person is much kinder and gentler than how it is done here.  I don't think anyone would enjoy hearing their loved one's remains referred to that way. 

That is not my understanding of how it works.  This article has a fairly clear explanation:

http://www.usatoday.com/story/news/nation/2014/01/09/brain-death-states-of-consciousness/4397515/
 

Quote

 

Brain death: These patients are no longer alive. There has been an irreversible cessation of all activity in both the brain and the brain stem. Reflexes that go through the spinal cord may persist even in a brain-dead state.

Coma: These patients are alive, but in a state of eyes-closed, depressed consciousness from which they cannot be aroused. Coma is distinguished from brain death by the presence of brain stem responses, spontaneous breathing or non-purposeful motor responses. Coma has three possible outcomes: progression to brain death, recovery of consciousness, or evolution to a state of chronically depressed consciousness, such as a vegetative state or minimally conscious state.

Vegetative state: Patients in vegetative states are alive but also have severely impaired consciousness, although their eyes may open spontaneously. The eye opening may give the impression of consciousness, but there is no awareness of the environment. These patients do not acknowledge the examiner; they do not attend or track objects that are presented to them; their movements are non-purposeful; they do not speak.

Minimally conscious state: These patients are also alive, with a severe alteration in consciousness, with intermittent, but inconsistent, behaviors suggesting awareness. Contrary to patients in coma or a vegetative state, minimally conscious patients may occasionally have purposeful movements, and they may track motions with their eyes or speak.

 

 

[HerNameIsBuffy]

1 minute ago, Coconut Flan said:

I would hope that how people refer to a patient or the deceased in person is much kinder and gentler than how it is done here.  I don't think anyone would enjoy hearing their loved one's remains referred to that way. 

That is not my understanding of how it works.  This article has a fairly clear explanation:

http://www.usatoday.com/story/news/nation/2014/01/09/brain-death-states-of-consciousness/4397515/
 

 

I was going off the Merck Manual - if coma was the wrong term substitute the correct one for it and I stand behind my point that referring to people as less than human is a shitty thing to do whether it's to someone's face or posted publicly.

I'm bowing out of this conversation because nothing productive will come out of my continuing to respond. 

[Terrie]

Brain dead is not a coma, it's dead. All that's left is a body. Short of a Biblical-style miracle, there is no coming back from brain death. That's why it's called brain death. The fact that we can sustain the body artificially doesn't change that. I honestly don't know what word would meet the "sensitivity" criteria while still being correct. 

[SrMaryEloquentia]

Obviously, this is a very emotional topic, and I`ll do my best to step very carefully here.

From my own experience: I have seen brain-dead patients, both a small boy and several adults. One of the most impressive experiences in my life was going through organ explantation with a patient. He was a healthy man in his 40s who had suffered a katastrophic stroke and was declared brain-dead 4 days later. I literally watched the EEG turning out pages and pages of static (no brain waves at all), and I still had a hard time considering him dead - he looked just as alive as the other ICU patients.

I watched the explantation process in the OR, and the very second the cardiac surgeon stopped his heart, he turned gray and pale and "really dead".

What I try to say is: brain death is a construct we (in western societies) have agreed upon. It is still hard to grasp in real life, and I can not begin to imagine what these poor parents go through. I hope they can finally let go now.

[HerNameIsBuffy]

22 minutes ago, Terrie said:

Brain dead is not a coma, it's dead. All that's left is a body. Short of a Biblical-style miracle, there is no coming back from brain death. That's why it's called brain death. The fact that we can sustain the body artificially doesn't change that. I honestly don't know what word would meet the "sensitivity" criteria while still being correct. 

As I said I'm not going to belabor my point, but I do need to correct factual misinformation.  The following is from the link I posted above:

Quote

Brain death is loss of function of the entire cerebrum and brain stem, resulting in coma, no spontaneous respiration, and loss of all brain stem reflexes. Spinal reflexes, including deep tendon, plantar flexion, and withdrawal reflexes, may remain. Recovery does not occur.

Bolding mine.  The Merck Manual - most widely used medical text, says brain death results in coma so "Brain dead is not a coma" is not correct.

it has nothing to do with my point, but if you're going to emphatically state something as if it's fact you might want to make sure it's true first.

[Grimalkin]

     It is easy to be sure your making the right descisions when you don't have to actually make these descisions.

      I couldn't even sign a DNR for my half sister who is developmentally disabled in the severe and profound range. I messed the paper work up four times, my hands shook, and I was sweating. I went over it again and again as to what medical interventions were permissible or not. Got reassurance from her case workers and the Nuns who take care of her where she lives. It is horrible I am angry that I have to even decide these.

[Terrie]

Merck also states 

Quote

The diagnosis of brain death is equivalent to the person’s death. No one who meets the criteria for brain death recovers.

Sustaining this situation did not help the family. The only ones it helped were the lawyers and quack "doctors" who were willing to sell a narrative of false hope for as long as the money lasted. If I sound overly harsh by saying this child has been dead for months, I can live with that. What I can't live with is feeding the narrative that discontinuing artificial support after brain death is "killing" someone and setting up other families in the future to be taken advantage of like this. Families in these situations are heartbreaking vulnerable and it pisses me off that their grief was exploited for five long months.

[meep]

11 minutes ago, Terrie said:

Merck also states 

Sustaining this situation did not help the family. The only ones it helped were the lawyers and quack "doctors" who were willing to sell a narrative of false hope for as long as the money lasted. If I sound overly harsh by saying this child has been dead for months, I can live with that. What I can't live with is feeding the narrative that discontinuing artificial support after brain death is "killing" someone and setting up other families in the future to be taken advantage of like this. Families in these situations are heartbreaking vulnerable and it pisses me off that their grief was exploited for five long months.

This is a concern for me too. Having your young child die is horrific enough, and now these people have made it a long, drawn-out saga for other people's benefit. Yes, of course the parents want hope that their child can recover. But it's not scientifically possible. It's not possible, period. Shame on all the doctors and other "experts" who tell these families to wait! 

[HerNameIsBuffy]

4 minutes ago, Terrie said:

Merck also states 

Sustaining this situation did not help the family. The only ones it helped were the lawyers and quack "doctors" who were willing to sell a narrative of false hope for as long as the money lasted. If I sound overly harsh by saying this child has been dead for months, I can live with that. What I can't live with is feeding the narrative that discontinuing artificial support after brain death is "killing" someone and setting up other families in the future to be taken advantage of like this. Families in these situations are heartbreaking vulnerable and it pisses me off that their grief was exploited for five long months.

Exactly.  What are you arguing?  You stated unequivocally that "brain death is not a coma."  I refuted that with an actual source so you're arguing something else.

  I said unrecoverable.  And I wasn't arguing that it was the wrong call.  I certainly never said with drawing life support was killing anyone.

I didn't call you callous because you don't want families to be exploited, although that's certainly a creative way to reframe the narrative.  I said you were callous for referring to people as less than human (shells) based on their medical state.  And that you can make the arguments, many of which I agree with, without stripping people of their humanity when you decide they no longer fit the criteria.  

I was calling out your verbiage not your beliefs...but you're defending your beliefs.  Which is much easier as they are more defensible.