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| No. 20 | 
Nov 02, 2009, 09:40 AM
 Re: Dad Fights Hospital to Keep Baby on Life Support
We already have insurance companies deciding for us who gets treatment and who doesn't. So government involvement in healthcare decision making wouldn't be a new thing....
Very sad case.
 | | Advertisement Sponsored Links | | | | No. 21 |
Nov 02, 2009, 11:17 AM
Re: Dad Fights Hospital to Keep Baby on Life Support
I have seen medical futility claimed twice in the unit I work in, both cases went to court. In both cases, the parents were never there, hardly called or we couldn't reach them, and these two babies were over one year old. They had severe bleeds, brain atrophy, constant seizures, on vent, unable to tolerate feeds, had HAL hepatitis, PPHN,and many more ailments than I can type. Those poor kids just laid there day, after day with only us to take care of them. In one case, the child became a ward of the county and was taken off the vent, he died a peaceful death in the arms of all of us that had taken care of him. We couldn't find the parents. The other one, an aunt took custody of and then she discontinued life support, but she never came in when we did it. Both of them had John Doe burials at the county cemetary.
Sometimes, living is worse than dying. In our area it is a very emotionally driven process, and most docs do not want to dc life support, but there are times when it is absolutely futile and all you are doing is causing the baby pain and suffering trying to save them. Sometimes, traching and GTing them aren't enough to get them home...they need nitric and vasopressors and a multitude of other drugs to keep them alive. And when you have parents that don't come in or only call to say keep doing what you are doing it becomes very hard on the staff. We have told parents that we will not continue certain treatments because they aren't working and the baby decides, usually later that day, that it is time to go to God or where ever they go.
It is truly a rock and a hard place.
| | No. 23 |
Nov 02, 2009, 11:53 AM
Re: Dad Fights Hospital to Keep Baby on Life Support
A somewhat neutral telling of their story that includes the mother's perspective: http://www.telegraph.co.uk/health/he...existence.html In a statement, the mother's lawyer, Anthony Fairweather said: "RB's mother has sat by her son's bedside every day since he was born.
"Every day she has seen the pain he experiences just to survive.
"In deciding to support this application she has listened and consulted with some of the best doctors in the world. Their view has been unanimous.
"In her mind the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child." | | No. 24 |
Nov 02, 2009, 12:08 PM
Re: Dad Fights Hospital to Keep Baby on Life Support
In my opinion, with 15 years experience managing a Peds ICU, I advocate that if the 2 parents cannot agree then the decision must be to continue all support. Our default position should be to support this life in the absence of parental consensus. The hospital should begin the discharge planning for this child. It is unclear to me why he must be hospitalized after such a long period of time. As we all know, it is very possible to take a child home who is trached, ventilated, and fed via a PEG or other tube. His quality of life would undoubtably improve if he could be in his home rather than in a hospital, environment is so important. Additionally, both parents are subject to a change in opinion about quality of life if the child were cared for in the home rather than in a hospital. It is not written in stone that his mother might feel better about the child's life if she could have him home and be more in control of his day to day life. The father might decide that the child's life is not great if he can interact with him in a more custodial fashion rather than as a visitor. We cannot know. The illness, injury, or death of a child can take a terrible toll on a marital relationship...
| | No. 25 |
Nov 02, 2009, 12:37 PM
Re: Dad Fights Hospital to Keep Baby on Life Support
I've seen a lot of cases where we withdraw care, i've seen some cases where the person on life support wants care to be withdrawn, and we've done it. I've seen 1 doctor actively kill someone who wasnt "dying fast enough" because he needed the bed for "someone save-able." I have seen far too many cases were we torture someone per their families wishes until their entire body just gives up. I have seen far too many people who get a trach and a peg and get shipped off to a nursing home. I have only ever seen one patient that was deemed futile, and I wanted to jump for joy.
He was 40 years old with end stage lung cancer. His insurance company refused any more chemo or radiation, so he was going to mexico for more treatment. He never made it there and ended up in our ICU when he had a respiratory arrest on his way there. He was ventilated and his lungs were just shot. He was never ever going to get off the vent, he was never going to be able to not be sedated because he couldn't ventilate if he was alert. He was a sheer bag of bones, very sad. The attending rounded and said "You know, we do not have to do ANYTHING that we see is unethical. I do not have to get ANYONE treatment that I deem is not ethical. and THIS is not ethical. Give me the DNR paper, I will sign it right now and when his family gets here, call me. I am going to explain to them that this is simply the end and there WILL BE NO heroic measures." Everyone was speechless. But, he did it, the family came, he explained that he was not going to do it, they said OK, and the patient got his morphine gtt and a private room and died a few moments after we extubated him. If that is "murder", then when I am sick and in his shoes - let someone "murder" me.
| | No. 26 |
Nov 02, 2009, 12:44 PM
Re: Dad Fights Hospital to Keep Baby on Life Support Originally Posted by oramar  You are confusing me. You say, it is murder to take a baby off life support when the parents don't want them to be removed. Are you then saying it is not murder to take them off if the parents want them removed? You should be careful about throwing those words "kill" and "murder" around in these situations. Human beings are removed from life support everyday and no one is killing them, no one is murdering them. There is an issue here about removing a child from life support without the consent of both parents. It is a valid issue and needs to be discussed and it is no wonder it is ending up in court. A lot of times these things do end up in court for good reason. But using words like kill and murder turn the discussion into something altogether different. It is not murder to turn off machines and let a death that nature intended to take place. It is not killing someone to refuse treatment and allow nature to take it course.
Some would disagree with you.
| | No. 27 |
Nov 02, 2009, 12:48 PM
Re: Dad Fights Hospital to Keep Baby on Life Support Originally Posted by tewdles In my opinion, with 15 years experience managing a Peds ICU, I advocate that if the 2 parents cannot agree then the decision must be to continue all support. Our default position should be to support this life in the absence of parental consensus. The hospital should begin the discharge planning for this child. It is unclear to me why he must be hospitalized after such a long period of time. As we all know, it is very possible to take a child home who is trached, ventilated, and fed via a PEG or other tube. His quality of life would undoubtably undoubtedly improve if he could be in his home rather than in a hospital, environment is so important. Additionally, both parents are subject to a change in opinion about quality of life if the child were cared for in the home rather than in a hospital. It is not written in stone that his mother might feel better about the child's life if she could have him home and be more in control of his day to day life. The father might decide that the child's life is not great if he can interact with him in a more custodial fashion rather than as a visitor. We cannot know. The illness, injury, or death of a child can take a terrible toll on a marital relationship...
To me, there's plenty of doubt. I'm not sure why you think it would be easier to have the child at home. That will mean workers forever in and out of the house, no true privacy, parents will have to care for him if workers don't show up - nothing joyful or better about that, in my mind, but I guess each case is unique.
| | No. 28 |
Nov 02, 2009, 01:00 PM
Updated
Nov 02, 2009 at 01:16 PM by >30yrsRN
Re: Dad Fights Hospital to Keep Baby on Life Support
[quote=caroladybelle;3950302]And we know that everything medical on Wikipedia, is well researched and accurate.
On the other hand, data from the Mayo Clinic indicates that there can be great variation in the treatability of the disorder and that some forms are fatal. It also indicates more serious issues in those that manifest the symptoms of the disorder earlier in life - I would say since birth indicates very early onset.
It also indicates that there are forms that have no drug treatment.
The other problem is the phrase "treatable". Virtually EVERYTHING is treatable. That does not mean curable, nor tolerable, nor maintaining good quality of life. Pancreatic cancer is treatable (but frequently not curable) with surgery/chemo, however frequently those "treatments" make actually risk shortening life, and frequently involving worsening quality of life. Is it worth lengthening one's life by a few days, if those days are marked by nonstop vomiting, being attached to IVs, NG tubes, or feeling acutely ill?
We do not receive the severity of the child's disease, whether it is presynaptic, or synaptic....all we know is when it has onset. That onset in early childhood (at birth) indicates that it is probably more severe, but again we do not know. We also know that child is unable to leave the hospital. As such, we cannot judge. But I would expect that the MDs in this DO have data on the longterm prognosis, and feel that they are better to judge than those of us, especially when relying on Wikipedia as a source of knowledge.
Yes given this is a tough decision situation . We do not have all the Facts about this situation and the article was just a attention getter!. I know not any one of us would want to be in this situation. Oh the site I was referring to had excellant referances to back this up. I will continue to use all the resources that have excellance referances. I think you jump to conclusion to fast . I was being general so any common person and a the street idiot could see this is a treatable. For Petes sake get over yourself! KUDOS to All the KUDOSERS to! LOL This is only a blog and yes sometimes it also has wonderful resources in it to. ( oh and this is not a true Medical referances site LOL) KUDOS TO ALL YOU BLOGGERS! I do not find your reply to be insultive in an shape,form or fashion. I just expected it after blogging a one liner. Shame on me! LOL
| | No. 29 |
Nov 02, 2009, 02:50 PM
Re: Dad Fights Hospital to Keep Baby on Life Support
I see both sides but want to add that this concerns me a bit: "Neither of the parents, who have been living at dedicated family accommodation, based near the hospital, since the birth of their baby, can be named for legal reasons."
Daddy might lose his housing if the baby isn't in care anymore.
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