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

[Terrie]

My apologies. I got confused because you were also referring to vegetative states and recovering from a coma. Looking back, I see you were referring to those as other scenarios.

Again, what word would you use to refer to this situation? I use the word "shell" because that is how I see it. The person is gone. I would not more call what is left a human being than I would  medical skeleton or heart fibers made to beat in a petri dish. "Body" strikes me as even more clinical and cold. I won't use the words "child" or "person" because the child is gone, and they imply someone who is alive to me, and as I said I won't feed that kind of narrative. So, seriously, if you're going to claim there are better words, what are they? I am honestly open to suggestions.

[Petrel]

This confuses me so much, saying it is demeaning to use certain words to refer to a person in a particular state of consciousness or medical state.  A person who is brain dead is not in a state of consciousness or medical state, they are dead.  Is it demeaning to refer to a body in a casket at a funeral as a shell? That type of language is used in religious services all the time to emphasize that the spirit has gone to heaven.  

I think you're having an emotional response to saying someone that appears alive but is dead is a shell because you're inferring, perhaps unconsciously, that someone who is in a recoverable state of unconsciousness is also a "shell".  They are very different things.  If a person is brain dead, their consciousness, personality, and memories have all permanently stopped.  Their body's circulatory and respiratory systems can be coaxed along for months or years, but that person is forever gone and will never be alive again.  

Someone who is in a recoverable coma might be able to reboot their brain given enough time and support, so we treat these patients differently--they are still alive, just currently incapacitated, and we try to honor their wishes for their care, if known. 

[SilverBeach]

My older brother was on life support fifteen years ago. Doctors said he was brain dead. I never thought of him as a shell, he was just my brother. My brain dead brother. And pulling the plug was agonizingly difficult. But I grasped through my fog of grief that at that point, it was his death being delayed, not his life being extended by the machinery.

However, had a doctor referred to him as a shell I would not have reacted nicely. The reason desecration of a corpse is criminal is because the dead are due respect. 

I don't care for religious references to dead people as shells either. Live human, dead human, still just human to the loved ones. And that "shell" is what remains. 

I get it, @HerNameIsBuffy.

 

[VelociRapture]

I see what @HerNameIsBuffyis saying. I highly doubt anyone here means to be disrespectful or offensive in anyway at all. I think there's just a disagreement on how best to show respect for the deceased and the remaining loved ones, while also ensuring that no false hope is offered somehow. The fact that they are being artificially kept "alive" just complicates things for many people.

The way I personally see it is this - the patient may be gone, but their loved ones are still here. Their emotions are the important ones to consider. To me, "shell" does come across as a very cold term to use in some ways. I wouldn't expect a medical professional to refer to a deceased patient (not being artificially kept supported) in this way to the family - I personally do not think they should refer to a brain dead patient in such a way either. Just as a sign of basic respect for the deceased patient and their loved ones.

And speaking personally (and only for myself if I ever find myself facing this situation), I'd probably prefer for the medical staff to continue to refer to them by their name or how I'm connected to the patient (i.e. Your husband or mother or child.) Not because of any delusions that they may be ok - just out of basic respect for me and to show basic dignity to my lost loved one's memory.

-----

And just as an aside, my utmost sympathy goes out to those posters who have shared personal stories about this subject. I am so very sorry you had to experience this and I'm so sorry for your losses.

[Terrie]

I have asked twice what word I should use to describe the situation of artificial support when the child died months ago. No one has been able to answer me, except to say how my word choice bothers them. I suspect it's because there are no "nice enough" words. There are no terms that aren't at least a little horrifying, because it's a horrifying situation. 

How medical professionals should talk to families is obviously a very different situation and, in my opinion, a red herring, since we're a discussion board, not, you know, medical professions talking to families about the deaths of their loved ones.

[SilverBeach]

55 minutes ago, Terrie said:

I have asked twice what word I should use to describe the situation of artificial support when the child died months ago. No one has been able to answer me, except to say how my word choice bothers them. I suspect it's because there are no "nice enough" words. There are no terms that aren't at least a little horrifying, because it's a horrifying situation. 

How medical professionals should talk to families is obviously a very different situation and, in my opinion, a red herring, since we're a discussion board, not, you know, medical professions talking to families about the deaths of their loved ones.

The situation is a brain dead child, somebody's son or daughter with a name, on extended life support. That's how to describe it. Discussion board, medical setting, wherever, words still matter as I'm sure I'm not the only one to have a loved one on an artificial respirator with little to no chance of recovery. Fifteen years later the pain is still there. So, a little sensitivity is in order. I laid out the reason I do not like referring to dead humans, on life support or not, as shells. It's not a matter of nice words or not, its a matter of respect. Using the term shell is simply not necessary.However, if you are ever in this awful situation, you are at liberty to refer to your own loved one as a shell. 

I have found this discussion triggering, going to stay away from it for a while. Death, grief, all of it sucks. 

[VelociRapture]

9 hours ago, Terrie said:

I have asked twice what word I should use to describe the situation of artificial support when the child died months ago. No one has been able to answer me, except to say how my word choice bothers them. I suspect it's because there are no "nice enough" words. There are no terms that aren't at least a little horrifying, because it's a horrifying situation. 

How medical professionals should talk to families is obviously a very different situation and, in my opinion, a red herring, since we're a discussion board, not, you know, medical professions talking to families about the deaths of their loved ones.

I specifically mentioned medical professionals because those are the people I would seriously hope would show the greatest respect and dignity to the patient and family. Sadly, that isn't always the case and there are medical professionals who make the situation even worse for the loved ones by using language that just isn't appropriate in that setting.

My suggestion of referring to the patient (either on life support or not) by "the patient" or by name or by their relationship to the loved one you are speaking to can also be applied on boards such as this or in other places as well. So please consider this a clarification and an answer to your question - the best way to refer to the patient is the manner in which I suggested medical professionals should refer to them.

@SilverBeachI'm really sorry about your brother and that you had to go through that situation. If I could give you a hug right now I would. Since I can't, accept this slightly awkward and creepy hug instead?

[nastyhobbitses]

It's a horrible situation all around, and I'd never wish the choice that  family had to make on my worst enemy. Keep your kid on the machines, and he'll just stay like that forever, never waking up, never recovering, but at least he's THERE and maybe some miracle could happen. Take him off and let go, and people will think you "gave up" or worse.

It's a different situation, but my grandpa's memorial was a week ago, and at the end of his life, my family had to make the decision to stop treatment for his cancer and shift all care towards making him comfortable and happy in his last days (he had lymphoma and dementia). It was incredibly hard to accept that he was going to die and it was time to let go, but when he died, we knew that his suffering was over and we could move forward with our grief, rather than sit around feeling like he was somewhere between here and gone. I do think that we need to be more accepting of the fact that our lifespans have an end, and that letting go is sometimes better, in spite of all the wonderful things medicine can do today. But all of that is much easier said than executed.

And with all of that said, I think that the doctors shouldn't have  done it without the family's knowledge/consent, even if ultimately it was for the best for everyone. If nothing else, from a purely pragmatic/PR standpoint, it only fuels the rather damaging "those doctors think they know best and think they can decide who lives and who dies and they're wrong and there's still hope" narrative that leads to stuff like this ordeal or the Jahi McMath case. I don't think medical professionals should be treated like concierges or short-order cooks who cater to a patient's whims, but these sorts of medical decisions should not be unilateral.

[Terrie]

@HerNameIsBuffy, @SilverBeachI'm going to drop this, because it's clear we're only upsetting each other. I find the idea of referring to the remains of a person five months gone as if they were that person to be very distressing while you find it disrespectful. There's no middle ground on that. I'm just grateful the judge put an end to things and hope it's the reversal of the upswing of these legal fights after Jahi's family won the right to desecrate her remains.

[HerNameIsBuffy]

12 hours ago, Terrie said:

I have asked twice what word I should use to describe the situation of artificial support when the child died months ago. No one has been able to answer me, except to say how my word choice bothers them. I suspect it's because there are no "nice enough" words. There are no terms that aren't at least a little horrifying, because it's a horrifying situation. 

How medical professionals should talk to families is obviously a very different situation and, in my opinion, a red herring, since we're a discussion board, not, you know, medical professions talking to families about the deaths of their loved ones.

I didn't respond because I had a work thing and didn't get back online.  

As a child.  A person.  Their name.  

I just think accepting the reality of the situation (which is optimal.  Delusions help no one) can be done without terms that strip their humanity.

when we die our bodies become corpses.  Fact.  But no funeral home will ask you if you want to see the corpse one last time before creamation.  They refer to them by name or relationship.  

this probably doesn't matter as much in the grande scheme of things as it does to me.  

[VelociRapture]

7 minutes ago, HerNameIsBuffy said:

I didn't respond because I had a work thing and didn't get back online.  

As a child.  A person.  Their name.  

I just think accepting the reality of the situation (which is optimal.  Delusions help no one) can be done without terms that strip their humanity.

when we die our bodies become corpses.  Fact.  But no funeral home will ask you if you want to see the corpse one last time before creamation.  They refer to them by name or relationship.  

this probably doesn't matter as much in the grande scheme of things as it does to me.  

This. Exactly this.

There are very serious issues with miseducation regarding what brain dead actually means. I think that contributes a great deal to some of the denial we see in some of these grieving families. That absolutely needs to be addressed by the medical community  - as well addressing the tendency for some medical professionals to offer false hope (for whatever reason.) 

But I personally feel that anyone (medical professional or not) stripping the patient of their humanity doesn't do anything to actually address those issues. You can educate people or discuss this issue and still remain respectful to the patient and family at the same time.

[Pammy]

As a rule of thumb, I try to choose words to use outside of a situation (like a board discussion) that would be respectful enough to use to the faces of the people involved. To me, I would never say "shell" to someone's face about their deceased loved one (probably not even as a metaphor at a funeral, much less in an ambiguous situation) so it's not a good enough word.

As for what word to use, in real life I would take my cue from the people who matter most, particularly family members. It does me no harm to follow their lead, but I could hurt them by self-importantly prioritizing my own accuracy about brain death above their gut wrenching trauma. 

Since we don't have that option (knowing what word the family were using), I think it is wisest to revert to medical language 'the patient' or to vague terms like 'the child' -- it may not be a complete child, in the spiritual sense in some world-views, but it is a close enough approximation in the physical world. Choosing a word that actively emphasizes spiritual absence is an unnecessary level of specificity.

[meep]

To be fair, I have myself lost loved ones very close and dear to me, my own family members. I 100% would and actually have referred to their bodies as "shells" and "corpses" and what have you. Maybe I'm a bitch, I don't know. But I consider my family members to be gone, separate from their bodies. So it doesn't offend me, nor does it seem to offend my other family members (at least not that they've said to me). Of course this is an upsetting topic, there is no way for death not to be upsetting. That is just life.

[VelociRapture]

23 minutes ago, meep said:

To be fair, I have myself lost loved ones very close and dear to me, my own family members. I 100% would and actually have referred to their bodies as "shells" and "corpses" and what have you. Maybe I'm a bitch, I don't know. But I consider my family members to be gone, separate from their bodies. So it doesn't offend me, nor does it seem to offend my other family members (at least not that they've said to me). Of course this is an upsetting topic, there is no way for death not to be upsetting. That is just life.

If it helps you personally to think of your loved ones like that then I don't see an issue. Everyone grieves differently and everyone finds different things helpful. As long as someone is grieving in a healthy manner that's all that counts. 

I do see an issue with people saying that kind of stuff about people that aren't their loved ones though. You can't always know how someone is feeling and the last thing anyone should want is to potentially make the situation more painful by unintentionally being disrespectful or offensive.

(And for the record, I don't think you're a bitch for preferring those terms. It's good to know what helps you get through loss. )

[Fascinated]

I wonder if people are talking at cross purposes here.  Obviously we all agree it would be excruciatingly difficult (impossible really) to accept that one's child, or anyone at all, is dead while their heart is still beating. I understood the use of the word 'shell' as a way to explain that, appearances to the contrary, this child no longer lives.  I do not think that @Terrie meant that she would casually refer to someone that way, but rather as a tool to assist the family in their understanding and acceptance that their loved one has, in fact, died.  

 

[Toothfairy]

My heart goes out to the family. I don't think government should be in our lives. However some families refuse to acknowledge their loved one is dead. The hospital has to make room for someone else. Brain dead is dead. There's no recovery. 

[Terrie]

Guys, I wasn't kidding when I said I was also finding this upsetting. This family used the ability to refer to their child's body as "their child" to shroud the reality of his death from both themselves and the average person on the street. They took to the media and got people to donate money pay for them to have a corpse flown to another country for surgery in the name of "saving their child." It's sick.

You want to keep talking about it, fine. But leave me out of it. 

 

[Mercer]

I'm really uncomfortable with the idea that we should feel obligated to use the same level of delicacy and tact when speaking about an issue on FJ as we would when trying to console a grieving family. That really inhibits discussion and the ability to have opinions that may not be what a person would want to hear at the most difficult time of their life, but which are highly relevant to the issue at hand. 

It also seems like a pretty inconsistent suggestion. Much more pointed things are being said and have been said in the Jahi McMath threads, but no one seems concerned in the slightest about whether her family would find it hurtful or difficult to accept - nor should they, in my opinion, because her family are not being directly addressed and thus their feelings do not dictate the tone of the conversation. Much more pointed things have also been said about, for example, Michelle Duggar's fertility and ability to have future children, which is likely an extremely sensitive subject for her, but those subjects are also treated as fair game here. It just doesn't seem practical to me to expect that a snark forum will only discuss issues in ways the people involved would find acceptable and comfortable.

I have a great deal of sympathy for this family, as I already said. I'm sure they're suffering tremendously. But at risk of sounding cold, I just don't think it's reasonable to treat someone who is suffering tremendously from the issue at hand (and who almost certainly isn't even present) as the baseline for tone on Free Jinger. I guess the bottom line is I don't really understand why we would tiptoe around this family's feelings and no one else's. I'm pretty sure just about any issue brought up on FJ is triggering for someone somewhere, but sometimes a blunt response is the only honest one all the same.

[AmazonGrace]

On 6.9.2016 at 4:56 AM, SilverBeach said:

The situation is a brain dead child, somebody's son or daughter with a name, on extended life support. That's how to describe it.

JMO it is no longer "life" support when the person is brain dead. Brain death equals death and calling it life support would be misleading  and possibly give false hope to the family as no amount of support will bring a brain dead person back to life.  I'd rather say organ support or artificial support or some such term.

[meep]

18 hours ago, Mercer said:

I'm really uncomfortable with the idea that we should feel obligated to use the same level of delicacy and tact when speaking about an issue on FJ as we would when trying to console a grieving family. That really inhibits discussion and the ability to have opinions that may not be what a person would want to hear at the most difficult time of their life, but which are highly relevant to the issue at hand. 

It also seems like a pretty inconsistent suggestion. Much more pointed things are being said and have been said in the Jahi McMath threads, but no one seems concerned in the slightest about whether her family would find it hurtful or difficult to accept - nor should they, in my opinion, because her family are not being directly addressed and thus their feelings do not dictate the tone of the conversation. Much more pointed things have also been said about, for example, Michelle Duggar's fertility and ability to have future children, which is likely an extremely sensitive subject for her, but those subjects are also treated as fair game here. It just doesn't seem practical to me to expect that a snark forum will only discuss issues in ways the people involved would find acceptable and comfortable.

I have a great deal of sympathy for this family, as I already said. I'm sure they're suffering tremendously. But at risk of sounding cold, I just don't think it's reasonable to treat someone who is suffering tremendously from the issue at hand (and who almost certainly isn't even present) as the baseline for tone on Free Jinger. I guess the bottom line is I don't really understand why we would tiptoe around this family's feelings and no one else's. I'm pretty sure just about any issue brought up on FJ is triggering for someone somewhere, but sometimes a blunt response is the only honest one all the same.

100% exactly. ^^^^

Obviously I would never go up to someone and just say....what would I even say????...."Your child is just a shell now"???? What???? I think I'm being really misunderstood here. I mean I've used this term within my own family under private talks about the soul, the afterlife, how the ending of their life was (in retrospect). I didn't think it would be offensive talking in such ways on an internet forum where I am assuming none of the family members are talking on this thread (not that they would even care what a random internet stranger would say to them). I also feel like if you are so incredibly sensitive about such a topic, you shouldn't even be in here, but that's just my opinion.