Fight Over Baby's Life Support Divides Ethicists
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What do forum members think of this controversy?
The oddest thing I see is that the mother is fighting to keep the baby on the ventilator, allowing him to die "naturally, the way God intended." I don't think keeping the baby on a ventilator is "natural" by any stretch of the imagination and I can't imagine her religion would even agree with her on that point.
It's my feeling that this is very sad. However, it's also another situation like Teri Schivo, omly this time there's terrible suffering involved.
Fight Over Baby's Life Support Divides Ethicists
POSTED: 5:49 p.m. EDT, April 25, 2007
By Elizabeth Cohen - CNN
Story Highlights:
• Fight over baby's life support pits mom against hospital, divides ethicists
- Texas law allows hospitals to withdraw life support against family's wishes
• Hospital says treatment is painful, futile for 17-month-old Emilio Gonzales
- Mom acknowledges son is terminal but wants life support continued
AUSTIN, Texas (CNN) -- When Emilio Gonzales lies in his mother's arms, sometimes he'll make a facial expression that his mother says is a smile.
But the nurse who's standing right next to her thinks he's grimacing in pain.
Which one it is -- an expression of happiness or of suffering -- is a crucial point in an ethical debate that has pitted the mother of a dying child against a children's hospital, and medical ethicists against each other. (Watch more on the battle over Emilio. )
Emilio is 17 months old and has a rare genetic disorder that's ravaging his central nervous system. He cannot see, speak, or eat. A ventilator breathes for him in the Pediatric Intensive Care Unit at Austin Children's Hospital, where he's been since December. Without the ventilator, Emilio would die within hours.
The hospital contends that keeping Emilio alive on a ventilator is painful for the toddler and useless against his illness -- Leigh's disease, a rare degenerative disorder that has no cure.
Under Texas law, Children's has the right to withdraw life support if medical experts deem it medically inappropriate.
Emilio's mother, Catarina Gonzales, on the other hand, is fighting to keep her son on the ventilator, allowing him to die "naturally, the way God intended."
The two sides have been in and out of courts, with the next hearing scheduled for May 8.
The case, and the Texas law, have divided medical ethicists. Art Caplan, an ethicist at the University of Pennsylvania, supports the Texas law giving the hospital the right to make life or death decisions even if the family disagrees. "There are occasions when family members just don't get it right," he said. "No parent should have the right to cause suffering to a kid in a futile situation."
But Dr. Lainie Ross, a pediatrician and medical ethicist at the University of Chicago, says she thinks Emilio's mother, not the doctors, should be able to decide whether Emilio's life is worth living. "Who am I to judge what's a good quality of life?" she said. "If this were my kid, I'd have pulled the ventilator months ago, but this isn't my kid."
The law, signed in 1999 by then-Gov. George W. Bush, gives Texas hospitals the authority to stop treatment if doctors say the treatment is "inappropriate" -- even if the family wants the medical care to continue. The statute was inspired by a growing debate in medical and legal communities over when to declare medical treatment futile.
Dr. Ross says that under the law, some dozen times hospitals have pulled the plug against the family's wishes. She says more often than not, the law is used against poor families. "The law is going to be used more commonly against poor, vulnerable populations. If this family could pay for a nurse to take care of the boy at home, we wouldn't be having this conversation," she said.
Emilio is on Medicaid, which usually doesn't pay for all hospital charges. The hospital's spokesman said that he doesn't know how much it's costing the hospital to keep Emilio alive, but that cost was not a consideration in the hospital's decision.
"[Our medical treatments] are inflicting suffering," said Michael Regier, senior vice president for legal affairs and general counsel for the Seton Family of Hospitals, of which Austin Children's is a member. "We are inflicting harm on this child. And it's harm that is without a corresponding medical benefit."
"It's one thing to harm a child and know this is something I can cure," he added. "But that's not the case here." Regier says Emilio is unaware of his surroundings, and grimaces in pain. He said the ventilator tube down his throat is painful, as is a therapy in which hospital staff beat on his chest to loosen thick secretions.
But Gonzales says her son is on heavy doses of morphine and not in pain. She said her son does react to her. "I put my finger in his hand, and I'm talking to him, and he'll squeeze it," she says. "Then he'll open his eyes and look at me."
Gonzales said she'll continue to fight for treatment for her son. "I love my kid so much, I have to fight for him," she said. "That's your job -- you fight for your son or your daughter. You don't let nobody push you around or make decisions for you."
Elizabeth Cohen is a CNN Medical News correspondent. Senior producer Jennifer Pifer contributed to this report.
Story can be found here: http://www.cnn.com/2007/HEALTH/04/25/baby.emilio/index.html
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This seems to be wishful thinking on the mother's part. It's hard for me to say what I would do in this situation, it would require more than a quick thought. It's possible she meant he was only looking in the direction her voice was coming from, but I think there is more to it than that.
Edit: Correction of homophone typos.
"The idea of a personal God is an anthropological concept which I am unable to take seriously." [Albert Einstein, letter to Hoffman and Dukas, 1946]
I still don't understand how the mother can say she wants him to "die naturally" when the child is on artificial life support.
Seems to me that would entail removing the life support.
It's a horrible situation to be in. I cannot imagine how awful it must be for everyone involved, including the medical personnel.
It seems to me that the mother is putting her own feelings ahead of the child who is suffering greatly and isn't going to get any better.
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Seems pretty straight forward to me...pull the plug.
I understand that a mother should have a reasonably large influence on the direction that her child's life is taken when the child is ... well...still a baby. But I don't think it is right if we have the evidence that she is inflicting pain on the child by keeping him alive to keep him alive...I think it is pretty cruel. We can't let a baby suffer b/c of the stubbornness (sp?) and ignorance of his mother. But we also must be careful to understand and not get angry w/ the mother b/c it is highly understandable to be overtly protective of your child and to hope when there is none.
Without a doubt however, it would be right to end the baby's suffering by pulling the life support...seems more then cruel to extend a painful life painfully longer.
Yes, it would seem that she is, but I cannot imagine being placed in that situation. She is probably hoping for a miracle while denying the inevitable. In her mind (I'm guessing) she has equated authorizing the removal of the life support to be the same as killing her own child since she knows he will die without it. She is no doubt under tremendous stress and in this situation it is very difficult to think objectively. My heart goes out to all of them involved and I hope someday we find better ways to deal with this type of thing other than dragging it out longer with lawsuits.
I don't have any children, but if I did(or this were my fiancee or parent) I'd hope that I would have the strength to do whats best for them.
She's not keeping that kid alive because he wants to be alive, she's doing it for herself. Her motives are selfish and her actions are despicable.
http://atheismisrational.blogspot.com/
Abort the mother (act of mercy for her and the world)
Pull the plug on the baby (act of mercy for the baby)
Put all remaining kids into care
So speaks liberal British opinion
Jon
You are right, removing life support would let this process happen. This is a very sad situation and one very hard for me to imagine being in. I honestly feel I would not want to be in the hospital on a daily basis watching a machine make my child breathe and tubes feeding him with no hope of recovering. What kind of "life" is that for him? What kind of pain is he feeling? If any at all?
It would be the hardest decision EVER, but I think I would have to let my childs dignity surpass every feeling or hope I was having.
The mother is going through a heavy duty emotional and possibly religious conundrum. These are keeping her from thinking what is best for the child. As a mother, she does not want to lose her child, probably not accepting his condition is terminal and in her mind, pulling the plug will be tantamount to killing him. A guilt, real or not, that no mother wants to bare. I suspect that her emotions are having a stronger bearing on her actions than her religious beliefs. A normal human reaction.
The xtian concept of "dying naturally", that is, in suffering until the heart stops on its own" makes me sick every time I have butted heads over it. At least in this case, the doctors are realistic in what should be done. This case is just opposite what occurs when an elderly person is knocking on death's door. Then it is "do whatever it takes to keep the person alive for a few more hours, or days."
Having to watch a person slowly die (old age), in extreme pain, while the doctors talked about running more tests, has been the second worst thing I ever experienced. (My daughter and exwife deaths the worse.) I finally demanded the doctors give him morphine, or some thing similar, to relieve his pain. They had to get approval from higher up, as morphine is a controled substance and addictive. They grundgenly did that after I screamed at them that the man would not get addicted as he was dying. A really stupid situation.
As jce stated about needing a better way to deal with these situations is very true. Unfortunetly, a few people have tried to change the status quo and have been put in jail for it. Medical ethics, human emotions, and religious dogma disallow the laws and reeducation of the masses to change.
My sympathy goes out to these people and all the others who have and will experience this. Especially to the medical staff. They have to deal with these situations every day.
"What the world needs is an enema." Jack Nicholson, "Batman"
Agreed.
Enlightened Atheist, Gaming God.
Oh my. I'm so very sorry to hear that. Losing a loved one is bad enough, but I think losing a child must be the most horrible thing one can experience. Again, I'm so so sorry.
You're right. I've never understood why addiction is even an issue when morphine is being administered to a terminally ill patient. Even in cases where the pain is unbearable (such s a burn patient), if it were me I'd rather have the morphine to dull the pain and deal with the addiction later.
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Thanks, again. I had no love for the man I mentioned. I never like to see anyone suffer needlessly.
A person has to have been in the situation first hand to really comprehend why the woman does not want to pull the plug. Logic and reason are not in the picture. It is pure emotion controlling the brain. I suspect her religious beliefs are in full turmoil, only causing her more confusion and stress. Somebody else there will have to get her away from the child and do what is necessary for the child's benefit. That seems cruel, but is a part of life.
When a child of any age dies for any reason, something inside you dies also. It is the worst for the mother, as she has a tight physical and emotional bond with the child. It seems to be an even worse condition if a first-born baby. You carry that for the rest of your life.
Baby deaths are not that common any more, except in really poor, remote communities. We do not realize, or remember, how medical care for new born and childhood has improved since the early 1950s. A couple years after my daughter died (14 months old), I was walking through the family (farming community) cemetery with my mother. Mom shocked me by explaining what the small grave markers were. She never talked much on our other trips there.
The markers are concrete the size of a brick, level with the ground. Most only have "baby" or a first name and one date. The six markers mom pointed out are for babies born to her sisters, her mother, and her mother's sisters. The babies were 1-year old or less. There is many other baby markers from other families in the very small cemetery. My sister has a full size headstone. (Died at 8 months old. Four months before I was born.) So, this used to be a common occurance. My family is not unique.
From what I have read, this situation has been caused by the religious leaders and religious politicans over the years. Their lack of knowledge and experience about drugs, along with their dogma of having to suffer before dying, lead to the laws on limitations of pain-killer use.
From articles written 10 to 20 years ago, there is confusion, or lack of strong evidence, on if those with unbearable pain ever do get addicted. (burn victims, spinal injuries, etc.) From the patient comments in those articles, the majority never get addicted. Something about the body chemicals in the pain factor over-riding the addiction factor of the drugs. These were people on drugs a lot stronger and more addictive than morphine. Think John Kennedy and all the pain killers he took from WWII thru his presidency. (Sorry, all of this is from memory.)
So, the public is screwed again by religious dogma and narrow minded thinking.
(Sorry for the length of this. The pain killer issue is one of my hot button topic.)
"What the world needs is an enema." Jack Nicholson, "Batman"
Your story about the walk in the cemetary broke my heart.
You're right, though, about how common it used to be for families to lose small children.
I remember when Jackie Kennedy lost Patrick because he was a preemie. He was around 4 pounds if I remember correctly. Today, a 4 pound preemie has an excellent chance for survival. Heck, I had a friend that had preemie twins, each a little over one pound. The both survived and are doing well.
People also didn't talk about losing a child way-back-when. I cannot imagine what the lack of emotional support did to the parents. I learned recently that my grandparents lost an infant. Dad said they never talked about it and he wasn't even sure of the child's name.
That makes sense. I've heard stories about burn victims that only relief they've gotten from pain is to be knocked completely unconscious (drug induced coma). We also hear stories about terminally ill cancer patients who get little, if any, relief from very strong pain killers.
It's beyond my comprehension that any type of relief would be withheld from someone dying in terrible pain for any reason.
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This gets away from the topic of the thread, some what, and may need a different thread. It delves into the question of "since this woman is not dealing rationally with the situation now, what will she and her husband do after the child dies?"
The question I will try to pose here is: "Why has society, in general, suppressed talking openly about what we are feeling and thinking during, and after, these situations?" Especially between the parents and family members who are involved?
Has this grown out of the religious doctrine of "don't question anything, just accept it and move on"? Or is it a problem in our psychological makeup that has been passed from generation to generation?
Not talking, with the appropriate person(s), about emotional issues is still a problem in society. It is really bad for men (generally) in that it is shameful for us to cry openly and have to keep our emotions and feelings deeply buried. For myself and a few men I have talked with and listened to in AA and psychiatric establishments, we learned how destructive that concept was to our emotional health.
Susan, it is interesting, and good, that your father mentioned the lost of a sibling. You have more information about your family history. Mom talked briefly a few times over the years about "why" my sister died (a screw-up by a country doctor), but never the cause. I saw the distress she was having just mentioning it, so I never asked.
The conversation with my wife about our daughter lasted 5 minutes on the phone a week after and 15 seconds 10 months after the fact. We were 10,000 miles apart when it occurred. I knew ever since that day that we were both stressed by it, but I had no idea how to approach the topic or what to say or ask. The "keep it buried" was strong ingrained in me. I over came that too late to talk with her. (No pity or sympathy wanted or needed here. Just trying to relate the need to learn to talk openly with loved ones about these type issues.)
A male cousin, my age, has taken drugs for 30 years to totally knock him out so he can sleep. Nothing wakes him up. What he takes during the day, so he can work, has little affect on the pain level. A spinal injury. When I ruptured a neck disc, the doctors would not give me any pain-killers (did not want them because of the side affects) and thankfully, they would not operate on it. Luckily, Chiropractors, massages, and exercises keep the pain level down.
In the late 1960s, Mom came home fuming one day. She had just come from her 2nd visit with a co-worker who was in the hospital, dying from cancer. On both trips, the woman was screaming for someone to kill her. The massive doses of pain-killers were having zero effect. We had many long conversations after that discussing what we should/must do if one of us were in that position.
The article on Mother Theresa sums up the mentality that controls our laws and ethic systems in the States. Until that changes, the dying will continue suffering needlessly.
"What the world needs is an enema." Jack Nicholson, "Batman"
The basis of my view on this is simple, but I think it will allow for the complexities of various situations.
The baby is, first and formost, not a person, nor will it ever become one, just as a person in a perminent vegetative state is not a person. It will have very limited brain activity, no moral agency, no capacity to communicate, very little emotionality 'except wah wah I'm in pain', no self-consciousness (that is not coyness in public - but the ability to be conscious of a self, no problem solving skills, all in all it is lesser than a simple stimulus-response organism. Its sentience is perhaps the only thing that might make it a human and is perhaps the only thing that could give it any interest whatsoever i.e. the interest in not feeling pain. It is therefore against the baby's one interest to keep it alive if life in this case equals pain.
There are however certain factors that stand in the way of this perfect, rational solution, but rather than dismiss them I think we should have some compassion for them. The mother's instinct is one of the most powerful emotions possible (although I will never know this personally, being a bloke and all) and I think it is important that she calmly told, clearly and rationally that it is in the child's interest to die rather than the courts simply making the decision and it being carried out in front of a screaming irrate mother.
Another huge problem is religious morality, the constructs of which came thousands of years ago with more of a free-floating rationale, relying primarily on intuition and instinct. Moreover these moralities are set in stone to the deeply religious person, they believe them to be wrong without questioning why they are wrong. They are not flexible enough to deal with the complexity of situations humans find themselves it. Thou shalt not kill is all well and good in day to day circumstances, in fact it is a necessary law in ordinary circumstances, but it should be, thou shalt not kill unless the person being killed is... a) freely consenting b) in a perminent vegetative state or in constant pain c) has no interest in life d) is not a person. (note: the use of the word person does not equate with human).
Religious moralities should perhaps be treated with less sympathy in law than maternal instincts. They are crude, over-simplified and cannot account for any number of possible situations.
Atheist Books
There are support groups these days that people can use, if they're willing. That's definitely something that wasn't around years ago. Unfortunately, as you said, it's deeply ingrained in many people to keep grief hidden. Perhaps the bereaved thinks it will come across as a sign of weakness if they don't hide it.
When my mother passed away, one of the first things the hospital did, was to (attempt to) give my father information about a support group of people who had lost spouses. He was not receptive.
It only took him 85 years to mention it! I couldn't get any information out of him, probably because he didn't know. The infant was lost before my father was born (I think). Since his parents didn't talk about it, I would suspect it really didn't affect him much. Or at least that he will admit.
I think it's not just loved ones. Many people find it easier to talk to someone who isn't close to the situation. This might be easier for some because they're not afraid of upsetting another who is grieving.
When talking with someone who has lost a loved one, many times it's difficult to bring up the deceased because you're afraid of upsetting them and it's uncomfortable. In reality, what's on their mind is the loved one and usually they're grateful if you tell a story or relate a memory of that person.
Some people get a great deal from support groups, being able to talk with others who have experienced the same loss.
Something else that wasn't around years ago is that some families take a tragedy and turn it into action. I know of a family that lost a daughter to Viral Myocarditis (heart muscle inflammation that can cause sudden cardiac death in children) and have started a huge fundraising effort for research. It's impressive.
http://www.abbysrun.com/
What it comes down to, after all my ramblings, is that people need to deal with grief and not stuff it tightly inside.
I cannot imagine how Catarina Gonzales will feel after Emilio is gone. I wonder if she'll beat herself up emotionally that she allowed his suffering to go on so long. Or will she be glad there were days he survived even though all he knew was suffering and pain?
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