Baby Joseph (end of life issues in an infant) died.

[dirtyhippiegirl]

http://www.cnn.com/2011/09/28/health/ba ... ?hpt=he_c2

http://en.wikipedia.org/wiki/Joseph_Maraachli_case

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I do pediatric home health and have a case that pretty much mirrors Baby Joseph. I don't know if there is a right or wrong answer. :/ In adults, cases like this are judged on the merits of what the patient would have wanted but you can't say the same for a newborn or young child.

[kpmom]

I do believe these decisions should be left up to parents, and not doctors.

[Austin]

So sad.

I don't really know how I feel about these issues. I go back and forth and for now, I just consider a definite opinion somewhat "above my paygrade".

Parents are not always objective and may not be realistic about the extent of the child's suffering, and doctors have their own problems and motivations perhaps . . . I just don't know.

[dirtyhippiegirl]

So sad.

I don't really know how I feel about these issues. I go back and forth and for now, I just consider a definite opinion somewhat "above my paygrade".

Parents are not always objective and may not be realistic about the extent of the child's suffering, and doctors have their own problems and motivations perhaps . . . I just don't know.

re. this story in particular, I have been following it since the beginning and at first the parents were making it seem like the trach would prolong the child's life indefinitely. NOW they're backtracking, they only wanted the child to die at home, etc.

[fundiefan]

re. this story in particular, I have been following it since the beginning and at first the parents were making it seem like the trach would prolong the child's life indefinitely. NOW they're backtracking, they only wanted the child to die at home, etc.

I don't know that it's backtracking so much as allowing reality to set in. No parent truly wants to believe their child is going to die. Of course it has to be accepted when it happens for the mental and emotional health of the parents, but in the process even they probably didn't have a firm grasp on what they thought or what they wanted or what their goals were.

I believe it should be the parent's choice in cases like this. Of course, there are always exceptions and sometimes extenuating circumstances, but the parent is the one who loves that child, dreamed of that child's future, cares for the child; it's the parent's heart that breaks for that child and is torn between decisions and options and 'what if's'. Doctors can give their best medical opinion, but they shouldn't be the ones making the decision. If my child were incapable of sustaining life, I'd want him or her to go as peacefully as possible, surrounded by love and being touched and hugged and kissed and held, not tied to an incubator in a hospital connected to wires and tubes, lying on an incubator bed sans the embrace of a loving parent.

[Beeks]

I don't know that it's backtracking so much as allowing reality to set in. No parent truly wants to believe their child is going to die. Of course it has to be accepted when it happens for the mental and emotional health of the parents, but in the process even they probably didn't have a firm grasp on what they thought or what they wanted or what their goals were.

I believe it should be the parent's choice in cases like this. Of course, there are always exceptions and sometimes extenuating circumstances, but the parent is the one who loves that child, dreamed of that child's future, cares for the child; it's the parent's heart that breaks for that child and is torn between decisions and options and 'what if's'. Doctors can give their best medical opinion, but they shouldn't be the ones making the decision. If my child were incapable of sustaining life, I'd want him or her to go as peacefully as possible, surrounded by love and being touched and hugged and kissed and held, not tied to an incubator in a hospital connected to wires and tubes, lying on an incubator bed sans the embrace of a loving parent.

Exactly this. It is scary to me that so many people think doctors should have the final say on these things in the majority of cases. Like you said, of course there are exceptions, but I think it should be up to the parents in almost every case.

[dirtyhippiegirl]

I don't know if parents really understand the persistent future of what it's like to care for a totally dependent child. I also think it's a bit...unrewarding? to love and care for a child who is incapable of loving you back. And parents eventually get this.

I do agree that parents should have the final choice (and, honestly, if you're going to diagnose a kid with PVS and then claim that keeping him alive is causing undue suffering? Does not compute.)

But as a nurse who sees these sorts of issues on a day to day basis...I'd estimate that the majority of the PVS kids I care for have parents who like the idea of their kid suddenly springing back to life...and then they get bored/tired/whatever of actually having to care for their comatose kid for years on end.

[Beeks]

I don't know if parents really understand the persistent future of what it's like to care for a totally dependent child. I also think it's a bit...unrewarding? to love and care for a child who is incapable of loving you back. And parents eventually get this.

I do agree that parents should have the final choice (and, honestly, if you're going to diagnose a kid with PVS and then claim that keeping him alive is causing undue suffering? Does not compute.)

But as a nurse who sees these sorts of issues on a day to day basis...I'd estimate that the majority of the PVS kids I care for have parents who like the idea of their kid suddenly springing back to life...and then they get bored/tired/whatever of actually having to care for their comatose kid for years on end.

Do you have children?? Of COURSE you would hope and dream and wish and long for your child to be ok. And obviously that dream would end and you would wake up to reality eventually. I don't think it's a matter of getting "bored" with your comatose child. The way you put this comes off really harshly.

[dirtyhippiegirl]

Do you have children?? Of COURSE you would hope and dream and wish and long for your child to be ok. And obviously that dream would end and you would wake up to reality eventually. I don't think it's a matter of getting "bored" with your comatose child. The way you put this comes off really harshly.

Yikes, sorry. By bored I mean negligent. I hear stuff all the time from other nurses -- with one, she was bitching because she went outside and the mom followed her to talk to a neighbor. She was SO upset -- "I can't believe mom didn't go back inside! I sat in my car and she was out side for, like, ten minutes." Kiddo is a very stable vent patient who is comatose. I'm pretty sure that mom having five minutes of normalcy isn't wrong.

Yes, some people get bored. And they get upset because their kiddo is doing better and their free babysitting hours are going to be cut. But you do get some families who are hyper-vigilant at first but slowly...seem to lose interest in their kid. To the point where you have a family who insists on keeping their comatose child alive but refuses to change his/her diapers, clothes, etc. Basic things.

[Beeks]

Yikes, sorry. By bored I mean negligent. I hear stuff all the time from other nurses -- with one, she was bitching because she went outside and the mom followed her to talk to a neighbor. She was SO upset -- "I can't believe mom didn't go back inside! I sat in my car and she was out side for, like, ten minutes." Kiddo is a very stable vent patient who is comatose. I'm pretty sure that mom having five minutes of normalcy isn't wrong.

Yes, some people get bored. And they get upset because their kiddo is doing better and their free babysitting hours are going to be cut. But you do get some families who are hyper-vigilant at first but slowly...seem to lose interest in their kid.

Makes sense I suppose. As you said, it is very hard to continue loving somebody who cannot show any emotion in return (and I think this is especially hard with a child that you haven't EVER had in a "normal" state, and so don't already have an established back-and-forth relationship with).

My first son has some special needs and in the beginning I was OBSESSIVE. Literally obsessive. Every spare moment was spent working on his therapy, going to doctors or researching on the internet. It was insane and I had to back it off to save my sanity....and in the long-run it was probably better for him too that I was able to tone it down a bit. So that's just where I'm coming from. =)

[Stickers]

I find it interesting the pro life foundations see extending his life with medical procedures as filling a "special mission from God" when part of the reason they're against abortion is it's an unnatural end to a pregnancy :think:

I'm not sure what I think of this case. I don't remember why the courts ruled for the doctors over the parents. Was it because letting him live was considered inhumane? A waste of resources? A part of me thinks the welfare of the child should come first but at the same time, if the child is not truly conscious and never will be, maybe doing what gives the parents peace is the best thing for us as a society.

edited

because expending doesn't mean the same thing as extending :P

[dirtyhippiegirl]

Makes sense I suppose. As you said, it is very hard to continue loving somebody who cannot show any emotion in return (and I think this is especially hard with a child that you haven't EVER had in a "normal" state, and so don't already have an established back-and-forth relationship with).

My first son has some special needs and in the beginning I was OBSESSIVE. Literally obsessive. Every spare moment was spent working on his therapy, going to doctors or researching on the internet. It was insane and I had to back it off to save my sanity....and in the long-run it was probably better for him too that I was able to tone it down a bit. So that's just where I'm coming from. =)

Taking into consideration the other moms I've worked with -- you're pretty normal. :D And a good mom, to boot. I work with some pretty frustrating moms. I have one, I love this kid, but mom is so weirded out by the trach that she doesn't even want me to take her outside. (I do, anyway.)

I get the hypervigilance. It's not a knock on your parenting skills or anything like that at all!

[PennySycamore]

I don't know that it's backtracking so much as allowing reality to set in. No parent truly wants to believe their child is going to die. Of course it has to be accepted when it happens for the mental and emotional health of the parents, but in the process even they probably didn't have a firm grasp on what they thought or what they wanted or what their goals were.

I believe it should be the parent's choice in cases like this. Of course, there are always exceptions and sometimes extenuating circumstances, but the parent is the one who loves that child, dreamed of that child's future, cares for the child; it's the parent's heart that breaks for that child and is torn between decisions and options and 'what if's'. Doctors can give their best medical opinion, but they shouldn't be the ones making the decision. If my child were incapable of sustaining life, I'd want him or her to go as peacefully as possible, surrounded by love and being touched and hugged and kissed and held, not tied to an incubator in a hospital connected to wires and tubes, lying on an incubator bed sans the embrace of a loving parent.

In our NICU, if it appears that death is imminent, the baby is moved to a separate quiet room in the unit where the parents can hold and be with their baby as long as they want to. The baby *is* surrounded by love even though s/he is still in the hospital.

[SunnyAndrsn]

Having done peds home care, I do agree that the parents should have the final say. I've learned a lot about what I would and would not do, if I was today (with all the knowledge and experience I have) presented with similar circumstance. I had a pt. that was trached and total care. It was very hard, and very heartbreaking.

His prognosis was poor, and imaging showed that his brain was deteriorating. I don't think the parents could handle or face that reality. They are very dedicated and involved, although initially resisted nursing care post trach. After a while, they got so used to us that they took a trip with the rest of the family. While I understood that, it was still strange to spend a week at their house with no one else around but my pt. In some ways it was easier, as they insisted we treat him "like a normal child". That is very hard to do when you know he is PVS.

Their was an incident with mom that was pivotal in me leaving homecare. She became very angry when I refused to take him to school one morning d/t a safety issue. I won't say more than that in the interest of privacy, but I really opened my eyes to the fact that this was not a good nursing situation for me to be in.

I know I've digressed a bit here, sorry! Bottom line--I understand both sides. I just wish no one had to make decisions like this in the first place. This family wanted everything possible done to grant this child an extra second to live. Another family I worked with had a child that was on hospice at the age of 9 months. They wanted no extraordinary measures taken to prolong their child's life.

May Baby Joseph rest in peace.

[muffynbear]

Wow, my eyes tricked me into thinking this thread was: "Baby JOSIE (end of life issues in an infant) died". I thought Josie Duggar had died. Time to get some sleep...the eyes are getting tired. :shock:

[maybeizfundie]

Sad for the family. I can't imagine the devastation of that loss.

I think it's an utter shame that it ended up being a big furor and that they had to leave the country in order to do what they felt was best for him, as his parents.

[JesusFightClub]

I am sorry. I cannot see the logic or kindness in prolonging that child's life at all. The Canadian doctors were correct. That should never, never have happened.

Dying on God's time requires medical intervention to that degree? That is certainly an intriguing interpretation. The child was not viable. Horrible though it is, that is the truth.

I try not to comment on these subjects but FFS what about the life of the child and the unnatural continuation of it was good or right.

[Beeks]

I am sorry. I cannot see the logic or kindness in prolonging that child's life at all. The Canadian doctors were correct. That should never, never have happened.

Dying on God's time requires medical intervention to that degree? That is certainly an intriguing interpretation. The child was not viable. Horrible though it is, that is the truth.

I try not to comment on these subjects but FFS what about the life of the child and the unnatural continuation of it was good or right.

I can see your point if the parents' only motivation was to make the baby live as long as possible. However, if what they wanted was to bring him home to die in a comfortable, loving environment instead of in the hospital, then I do think it was the good and kind thing to do to give him the procedure. I don't know if we'll ever know what their true thoughts and motivations were, and maybe they even changed over time.

[liltwinstar]

I don't know...seems to me that when it comes to end-of-life issues, there's no one "correct" answer.

I also know that some people believe that you should try everything, do everything, etc even if it seems completely unlikely that the person will ever recover. I know doctors probably don't want to tell people that they can't do anything further for their loved one, but at the same time, honesty is really important. It's just that sometimes you can be 100% honest and people still won't believe you.

I'm glad this poor baby was able to pass peacefully.

[JesusFightClub]

I can see your point if the parents' only motivation was to make the baby live as long as possible. However, if what they wanted was to bring him home to die in a comfortable, loving environment instead of in the hospital, then I do think it was the good and kind thing to do to give him the procedure. I don't know if we'll ever know what their true thoughts and motivations were, and maybe they even changed over time.

Beeks, that motive is still their own comfort though. This was a child too sick to survive and, to be honest, I doubt he could have told the difference in any meaningful way between hospital or home or have had any concept of either.

A lot of what was stated in the article was wishful thinking. I know people who think their deceased loved ones do things like send them lucky pennies or feathers. I don't attempt to disabuse them of this as it seems to bring comfort. But when it comes to RL suffering, logic needs to be applied.

The kindest thing would not be trach and rambling on about God taking the child in his own time. That appears almost as a form of selfishness.

[Beeks]

Beeks, that motive is still their own comfort though. This was a child too sick to survive and, to be honest, I doubt he could have told the difference in any meaningful way between hospital or home or have had any concept of either.

A lot of what was stated in the article was wishful thinking. I know people who think their deceased loved ones do things like send them lucky pennies or feathers. I don't attempt to disabuse them of this as it seems to bring comfort. But when it comes to RL suffering, logic needs to be applied.

The kindest thing would not be trach and rambling on about God taking the child in his own time. That appears almost as a form of selfishness.

I don't think we can know their motives, but I would assume that the vast majority of parents are trying to do what's best for their child. Further, if the child is in a vegetative state and essentially braindead, I don't think it makes much difference to the kid where or when he dies and if the parents feel better bringing him home, I say bring him home. It's just my opinion.

[FakePigtails]

What I find most telling is that NO hospital in Canada and apparently just the one in the US was willing to do the procedure. If that many doctors ruled it unethical, it probably was and I don't believe it's up to a patient or parent to make a doctor go against medical ethics.

[gustava]

What strikes me is that this is their second child to die from what appears to be the same illness.

[JesusFightClub]

It is not the bringing him home I object to. It is the needless prolonging of a pitifully short and tortured life.

What was the point in the trach for a dying baby?

[JesusFightClub]

What strikes me is that this is their second child to die from what appears to be the same illness.

Yes. Excellent point.

Of course, just give birth to all the pitiful little beings doomed from birth one can. That makes sense. *headdesk*

To me this is selfishness to the extreme. If you want kids that badly and you have genetic issues then adopt. I love reading Angri-la's stories about her child from adoption. That is the best route, not pumping out babies in the hope one will live to double figures and be able to understand its own name.