Monday, April 30, 2007
What is in the best interest of the dying?
There are few things sadder than seeing a child with a tube up his nose. When Catarina Gonzales first showed me video she had shot with her camera phone of her little boy, Emilio, my heart broke for them both. Emilio is Catarina's life, and soon, Emilio will die. The 17-month-old suffers from Leigh's disease, a rare genetic disorder that's destroying his central nervous system. Emilio can't hear, see or eat without help.

Emilio is spending his final days in the Pediatric Intensive Care Unit at Austin Children's Hospital in Texas. A ventilator keeps him alive. Doctors say they can't help him. In fact, they believe the ventilator is prolonging Emilio's suffering. The hospital, which is run by the Catholic church, believes the ethical thing to do is to stop life support and let Emilio die. In Texas, that's permissible. Under a law signed by then-Gov. George W. Bush, a hospital can cease life support if it is deemed "medically inappropriate".

But Catarina says it's not her son's time. She is suing the hospital. The two sides have been in and out of court, with the next hearing scheduled for May 8. Catarina contends the hospital is "trying to play God by saying who lives or dies." She says that Emilio isn't in pain and that he responds to her touch. In the meantime, Catarina is by Emilio's side day and night. She spends hours on her cell phone, trying to find another hospital to take her son. But so far, she's had no luck.

In some ways, Emilio's situation is the same one thousands of American families face every day. When death is near, what is in the best interest of the dying? Should doctors have the final say or the family?
I thnkink that the hospital should have no say in whether or not Emilio is taken off of life support or not. It should be 100% up to his mother, because it is her son and she is the one who brought him into this world. If she wants to let him stay and continue to fight then she should have that right. I'm all for you Catarina. I'm praying for you.
The ethical question over who gets to decide that life-supporting measures are futile is a very hard one to answer. On one hand, prolonging life that has no hope of ever improving in quality and in fact, may prolong suffering, seems unethical. On the other hand, how do you measure suffering, a purely subjective experience. Also, the difference in beliefs about faith and dying between families and the medical system often leads to conflicts between the two.
I believe lawsuits are not the answer as they bring anger and distrust into an already painful situation. Communication and consensus and constant reviews of the day-to-day situation can help to bridge ideological gaps, and do what's best for the patient.
I believe they should give him a high dose of painkillers and let him die in peace that way. Suffocating to death from having the ventilator removed is not humane and keeping him alive but in pain is not humane either!
In one article on cnn, the mother was quoted as saying that she wanted her son to die the "way God intended"

if that's true, he should never have been put on a ventilator in the first place and he would have been dead a long time ago

I understand that this is an agonizing sitution for her

but she has to accept that her child is never going to be better and this is just prolonging the inevitable at the expense of everyone else.

Not only for the medical expenses that the taxpayers are paying for, but also the resources being used - the bed, the staff hours - for other people with a chance at life.

It's time for people to start considering the quality of the life more than merely continuing an existance.

The machines should only be used when they can actually help the person on them.not when they are merely a comfort for those who are not to feel like everything is being done to prolong exisitance for as long as possible.

- a concerned Canadian
I find it ironic that Catarina doesn't want the hospital playing God or interfering with what God intended by removing the [man-made] ventilator. Medicine and technology are in many ways our new god. Anybody who is remaining alive solely through the use of machinery is not alive in a natural state. If we are so concerned with "what God wants" out of this child's life, the hospital should be allowed to let him pass on as peacefully as possible.

My heart goes out to Catarina in her time of suffering. I hope she can allow herself proper grieving so that she can progress with her life and use this suffering to strengthen her purpose.
Whether the child should be kept on life support ishard to say, but I must agree with a couple ither commenters here.

How is removing life support "playing God"? I would think that putting the baby ON it would be. Look at your book. Sometimes, God chose death.
Though I do not agree with the hosptial taking charge and trying to force this poor mother into a decision, I do believe that this innocent child, this gift, should be allowed to rest.

Ventilators and other medical life sustaining things are horrible selfish ways to prolong the life of those who have no hope of a life. I would hope that if my child were in that situation, I would set aside my feelings, my grief, and see that this child is in pain, is suffering, but can not tell anyone. As the mother, the protector, the caregiver she is the only one that can let this child go.

I pray for her to find the strength to do what is ultimately the most unselfish, most loving thing she has to offer this poor child...the choice to be free of this pain and this human body that just could not live here, and allow him to fly in heaven where he will always surround her.
Playing God? Hah! I am an RN and see similar scenes played out all the time. I once had a neurosurgeon tell a family "if it was up to God he'd be dead now, I saved his life!" Truer words were never spoken. People need to realize that death happens. People need to realize that health care is not free. I hope this family is paying every single cent of this hospital bill. Having a terminally ill child is devastating but for God's sake take that kid off that machine, keep him warm and comfortable and let him go back to the God you put so much faith in.
I do believe that the 'playing God' comment is a poor choice of words. However, any and all decisions should be left up to the parents, they know their child the best. If that were my child, I would want him to be kept alive as long as possible at any cost as well. God bless and good luck.
I am a critical care RN and I have seen many families unable to make the decision to take their loved ones off life support. I believe most families have an easier time with MDs and Ethic committees making recommendations (my facility does not permit making decisions. It is easier for the families when they do not feel that they chose when their loved one died...
Reading this story just made me cry. I am too the mother, I understand the feelings of not wanting to “let go”. Children are not supposed to die before their parents. I also don’t believe that the hospital should have the say in whether or not the child is kept on life support or not, that should be the parents call.

But is story is horrible. I have had to make this decision. It was the HARDEST choice in my life. When my son was born he also had medical issues and the only way to keep him alive was life support. We tried everything we could to help him. When the doctors came to me and said that nothing could be done that life support was his only option and he was in pain, as hard as it was, I spent my time with him and let him go. I know that when I see him again he will thank me rather then ask me what I was thinking and why I was so selfish to keep him here.

God bless my son, Kyle and may he rest in peace.
Having a Special needs child myself I truly believe that QUALITY of life should be the determing factor. Vent life is NOT quality.
I believe that that what God give you, God can take it, our children are not ours,are God's children.
The fact that the child its alive because human tecnology means that its not supose to be alive; but again if it was my child........I'm sure I will also fight to the end like a candel in the wind , until there its no more flame in his litlle body, thinking what if.. maybe if...
God bless this little angel, the only words that I have for this poor mother it's that his little boy its so preccious that God want to have him.
Marinela from texas
To the RN who posted last. I hope you are never anywhere near my child while he is in the hospital. Your words come form a heart of stone and not from someone who is supposed to be comapssionate.

Healthcare is a right not a luxury that should only be available to those who have the funds or who are blessed with good insurance. My son is 6 years old and has been fighting cancer since July. We have been blessed with great insurance, but I can atest to the great difference in care that is given to the children who have lttle or no insurance. I grieve for this poor mother who is slowly watching her little one fade away. What will I do if my child reaches that point? I don't know. He is my only child, my everything. I do know that no one has the right to judge her perception of her child. If she says he is smiling at her and responding, then he may very well be. I know that when my child became ill, I knew,in my heart I knew there was something seriously wrong with him and no one would listen. I had to fight with the doctors to run more tests and there it was, he had Cancer.

I urge this mother to pray unceasingly for God to guide her, to give her wisdom and strength to do what she must for her child. I will be praying too.
This is happening in my city, Austin, at a hospital that I work for (in a non-clinical capacity). This is the 'charity' hospital of Austin, meaning no one is turned away because of their inability to pay, which is the only reason this child is on life support right now. Catarina is having little luck transferring Emilio to another hospital not only because of his condition but because of her likely uninsured status and the strain his care is putting on the system. As everyone has so far stated, this child will have no life and should be allowed to die naturally, without the selfish motives of his grieving mother. Death happens, and unlike the students at VTech who had education and a life to live that was cut suddenly short, this child hasn't even made it out of the hospital. Let him go, Catarina. You can have another, healthy child that will give you all the happiness you deserve, and will not drain the resources of an already strained healthcare system.
The question of ethics here is very difficult. As another comment says, if not for current medical advances, this child would have already died. It would be SO hard as a mother to have to agree to let your child die- you just CAN'T. But seeing their suffering? I think that would be worse.
This is ridiculous! This child isn't living... it's existing ... and that's no life. Take him off the machines.

And, who do you think is paying for this child's time in the hospital?!?! We are, the tax-payers!!! So frustrating!
There is no reason the hospital should have ANY say in this matter. Whether the child's suffering is being prolonged or not, the choice to pull life support should never be the right of any doctor. If a family believes in keeping their loved one alive for as long as possible and letting them die a natural death that is their right, and doctors should have no say. A doctor can voice their opinion, but not take it to the next level. It is the families decision.
I just went online to find out what Leigh's disease was. Unfortunately it's a fatal disease therefore Emilio will die. Although my heart breaks for Catarina, sometimes we have to put aside our own selfishness and consider what is in the best interest of someone who is terminally ill. Although I am not a parent, I did go through the experience of letting go a terminally ill parent. My father was diagnosed with terminal cancer and given less then 6 months to live. We all had hope that just maybe he could still be saved since the origin of his cancer was unknown. We went to the Mayo Clinic as a last ditch effort for help and was told that chemo and radiation would quite possibly kill him and if it didn't, it would extend his life only by a few more painful months. My father took all of the information in and decided that as much as he and the family wanted him to live, the attempt to extend his life was not worth all the pain. He signed papers declaring that he should not be resucitated nor hooked up to machines should he lose consciousness. My father and family did not give up rather he explained that his quality of life would be diminished and that being hooked up to machines is not living. My father was able to tell us to let him go which he did one week later. As hard as that was, I'm at peace to know he did not have to suffer anymore then necessary even though none of us wanted him to go.
What's a "natural" death? The way for this baby to die "naturally" is to take the vent away and let him go. Not to have every orifice plugged with some kind of tube, every futile medical procedure done, until finally after a couple of years he gets pneumonia or a terrible decubitus ulcer with some kind of superbug that is incurable, and eventually he dies anyway ("unnaturally"!), after having consumed millions of dollars of resources that would've better been used to help save a baby who really could be saved.
This is the choice of the family. That said, the Mother should do the right thing and let her son go. If it were not for the artificial machines keeping him alive he would be gone already. Imagine what it would feel like if someone were standing over you and manually pushing on your chest 24/7. It would be painful and that is what this machine does. This is not life.
I would just like to say that unless you are in this situation, you have no idea what you would do. I would like to think that I would not prolong my child's unnecessary suffering, but I also could not image having to make that choice. It is a horrible situation to be in. If there was no hope the hospital should never have put him on life support to begin with. Then the mother would not be in this situation at what is the worst experience in her life. And to tell her to move on and have another child is cruel. Not one of my children could be replaced by having another. Nor would it lessen the pain of losing one. They are all unique creations.

To the RN who's neurosurgean said "if it was God's choice he would be dead, I saved his life" Part of that is correct if it was God's will that he die he would be dead, God allowed that person to live through the actions of the neurosurgeon.

As far as Emilio is concerned, we all should have compassion for this child and his family. Money should not be a consideration in healthcare. I would rather our tax dollars go toward healthcare for people who can't afford it than to discover what is in space or how many stars there are.
As a Neonatal ICU RN, I see this situation all too frequently. A lot of the babies we have are very sick. We don't want to have to put a price on life, but, unfortunately, health care isn't free. You can't look at a baby and say, "$1,000 is ok, but I don't think we should pay more than that." At the same time, there are a finite number of resources available. If you have only 10 doses of a medication, do you give those 10 doses to 10 people who will most likely die soon or to 10 people who have a much better prognosis? There is a well-known nursing shortage and this child is "taking up" the nursing care available. The hospital very well may be turning away admissions for a lack of bed space or staffing. What about those kids that need the care?
A lot of Americans have a hard time thinking about death and a lot of Americans can't confront the idea of death. But it happens. Not all babies survive. As sad as it is, there is nothing we can do to change that fact.
Its hard to ask a family to make the decision to end their child's life. Trust me, they will feel better for it in the end.
These decisions are no less agonizing for the mother of the unborn child who has been diagnosed in utero with a deformity noncompatible with life - yet many (quite possibly some of those on this board) - would say the government and courts (Supreme Court, perhaps) should be the ones to decide what the best health care decision should be. Certainly not the mother/father. Certainly not the doctor.

We need to make up our minds.
If someone is on a machine to keep them alive they are no longer able to live on there own. Period.
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