Canadian Family Fights to Keep Baby Boy's Breathing Tube in Place

[jjenny]

I'm sorry, but I hadn't seen that they wanted to give poor Joseph something to make him die faster. Where did you see this?

Since he apparently can not breathe on his own (unlike Terri Schiavo) there would be no need to give him anything to make him die faster.
Just removal of the ventilator would presumably lead to a fast demise.

 

[CHICANA]

I'm sorry, but I hadn't seen that they wanted to give poor Joseph something to make him die faster. Where did you see this?

In the video. It was what his father said so he could have misunderstood or I misunderstood him. But he did say they wanted to give him an injection at the time they took him off life support.

 

[jjenny]

What we are talking about isn't any kind of a cure. Presumably the most that can happen is prolonging the child's life by some months. The child is deaf and blind so what kind of quality of life is it going to be during these months? Does the child feel pain?

 

[Kimberlyd125]

It should be the parents' decision no matter what.
They should be the ones deciding if his quality of life is worth it.
I can not imagine something like this being forced upon my family.

JMO

 

[MagicRose99]

I'm sure I'm in the minority here, and believe me, I do have compassion...

But, if this were my child, I'd be brave enough and love that child enough to let him go. In my own opinion, that child does not and will not have a quality of life that would make any difference except a burden on loved ones who have to give so much of their life just to keep him breathing.

And what about paying for all the medical treatments and medicines and nurses and doctors... who's paying for all of this? What about when funds run out or money shortage - what happens to that poor baby then?

I'm all for loving a child and sacrificing, but when it comes to the child living only a smidgen of normalicy, living on life support, living, but not living, I'd say, "I love my child enough to let him go, to be at peace and to go with God."

 

[vjlaw]

I guess I have a totally different understanding of what is going on with this tragic situation. It is my understanding, the family wanted to take their baby home to die with them and with a way to breathe but the powers that be over him in Canada would not allow them to do that. Cardinal Glennon Hospital in St. Louis is doing a trach so he can breathe. As far as God goes, HE gave that baby to the parents, not the Canadian courts. jmo

 

[CHICANA]

I guess I have a totally different understanding of what is going on with this tragic situation. It is my understanding, the family wanted to take their baby home to die with them and with a way to breathe but the powers that be over him in Canada would not allow them to do that. Cardinal Glennon Hospital in St. Louis is doing a trach so he can breathe. As far as God goes, HE gave that baby to the parents, not the Canadian courts. jmo

You are correct.

 

[HOOKEDNAN]

I don't post often, but as a Canadian who has been following this from the beginning, this is the way I understand the situation. The parents wanted to have the hospital give their baby a tracheotomy so that they could take him home to die. They had had a daughter with the same condition and had been able to do that then. The reason their current doctors did not want to do that was they thought the baby would be better served to die in peace at the hospital. The parents thought that the baby would suffer being removed from the ventilator. The doctors said they would make sure it would be peaceful By this time things had gotten out of control and the doctors and the hospital ended up looking like the bad guys, which they are not IMHO. A very sad time for all.

 

[Soulmagent]

I'm sure I'm in the minority here, and believe me, I do have compassion...

But, if this were my child, I'd be brave enough and love that child enough to let him go. In my own opinion, that child does not and will not have a quality of life that would make any difference except a burden on loved ones who have to give so much of their life just to keep him breathing.

And what about paying for all the medical treatments and medicines and nurses and doctors... who's paying for all of this? What about when funds run out or money shortage - what happens to that poor baby then?

I'm all for loving a child and sacrificing, but when it comes to the child living only a smidgen of normalicy, living on life support, living, but not living, I'd say, "I love my child enough to let him go, to be at peace and to go with God."

I cant judge someone elses quality of life, That is to much responsibility for me. I cant call someone elses loved one a burden on them either.

My dd had cancer we owe 90,000 dollars for bills that we cant pay. Our poor baby was worth it. Even if she suffered though painful crap we hated seeing her go though. Sometimes it isnt about what I as a parent even think or feel sometimes it is all about the child. FWIW.

It is not an easy place to be and they have my respect.

 

[vjlaw]

I don't post often, but as a Canadian who has been following this from the beginning, this is the way I understand the situation. The parents wanted to have the hospital give their baby a tracheotomy so that they could take him home to die. They had had a daughter with the same condition and had been able to do that then. The reason their current doctors did not want to do that was they thought the baby would be better served to die in peace at the hospital. The parents thought that the baby would suffer being removed from the ventilator. The doctors said they would make sure it would be peaceful By this time things had gotten out of control and the doctors and the hospital ended up looking like the bad guys, which they are not IMHO. A very sad time for all.

It doesn't matter who thought what,IMO, but the parents were not being allowed to do what they thought was best for their family. The courts from my understanding were denying the parents to make the decision. Hospitals are not a place for peace. That is for the parents to make. I really could care less about how the hospital or the doctors look. jmo

 

[Snoopster]

Not surprisingly, the issue devolved into angry rhetoric, mistruths and unfair accusations, the worst of which came from Priests for Life.

Their press release stated "under cover of darkness" Father Frank Pavone "rescued" Joseph from LHSC and delivered him to the St. Louis hospital "where efforts to save his life will not be officially labelled 'futile.' "

"I knew, after this dragged on day after day, I needed to be here myself to get Baby Joseph to safety," said Father Pavone in the release. "He needs to be in a hospital that cherishes life over the bottom line."

What a load of crap.

Pavone's words are nothing more than blatant self-promotion, the politicizing of a child's horrible and tragic fate in a cynical bid to promote their own cause.

http://www.lfpress.com/comment/columnists/joe_belanger/2011/03/18/17674041.html

I agree with this commentator's opinion. Implying that they had to sneak Baby Joseph out of the hospital 'under the cover of darkness' is a load of baloney. The family was always free to take Baby Joseph home. The problem was that they wanted the hospital to do a surgical procedure, which would not save Joseph's life, and which could possibly cause him pain.

A hospital in Michigan considered taking Joseph, but once they looked at his medical records they refused to take him. (Perhaps they too, were of the same opinion as the hospital in London?)

My son was treated at this hospital. He received excellent, loving care. I find it offensive that others would presume to believe that the medical staff is uncaring and don't have Baby Joseph's best interests at heart, and that what motivates them is the almighty dollar.

Of course we all should make the final decision, as parents....but at some point we can't force intrusive procedures that will accomplish nothing.

I am thinking of Joseph's parents and hope that they will find peace soon. I can't imagine being in their position, facing the loss of a precious child.

 

[PeteyGirl]

IMO, the burden of suffering is much greater for the parents, not to mention the burden of suffering they will endure for the rest of their lives, long after this baby boy is at rest.

The death of their baby will be the last experience these parents will have of him. That's got to mean something.

This is a test of empathy and humanity for the healthcare providers and a very necessary thing for all of us to contemplate.

A week ago I had a patient transferred from critical care to the oncology unit for "hospice". My direct report from ICU stated "they are ready to let him go". When the patient and family arrived, within moments it was clear they had no such "readiness". All orders for his feeding tube and antibiotics and blood pressure medicines had been stopped on arrival to my unit.

The patient was a young man who suffered a brain bleed. He was minimally responsive and the neurologist considered him "locked in", aware of his surroundings yet without ability to respond. He could breath on his own. He looked at his family and often had tears running down his face.

I thought of the little boy in London, and with him and his parents in mind, I minced no words and told the family the intention of the medical staff. They were flabberghasted. I got real clear on what they wanted, called the doctor, and we restarted his feedings and medication.

He died the next afternoon Of COURSE he died. He didn't have a hope but I was NOT going to be a part of taking it away from his family, when they were so determined to keep what shreds they had.

His family did not spend his remaining time FIGHTING with us, feeling betrayed and frightened in an already unbearable situation.

With whatever power I have as an RN, what happened to the little boy in Canada won't happen with any of my patients, at least on my watch

 

[LCoastMom]

I'm sorry, but I hadn't seen that they wanted to give poor Joseph something to make him die faster. Where did you see this?

Since he apparently can not breathe on his own (unlike Terri Schiavo) there would be no need to give him anything to make him die faster.
Just removal of the ventilator would presumably lead to a fast demise.

The purpose of the medication is not to make him die faster - slowed respiration is a side effect of morphine. It is administered to ease suffering.

Had they removed the respirator Joseph would have suffocated, not a pleasant way for anyone to die.

It is done right here in this country everyday - a baby is born with pneumonia and placed on a respirator - what no one realized was he also has a heart defect and is in need of a transplant. The parents make the painful decision not to have a heart transplant. He is given a dose of morphine just prior to removing the ventilator to ease the effects of suffocation, he is asleep in seconds and in minutes his respiration and heart stops. He passes quietly in his mommy's arms, while his daddy holds her.

Horrible? Yes for all concerned, including the doctors who are taught to do whatever it takes - sometimes there is just no other choice.

Is there for Joseph? IDK. I'm glad they will feel they have given him every chance or for him to pass in their care - if that is what they request.

 

[PeteyGirl]

Morphine and other narcotics (usually Dilaudid or Fentanyl) are used for "terminal sedation". When a person is actively dying, their organs are shutting down and this causes a great deal of discomfort. Or, we imagine it MUST. Suffocation can't possibly be pleasant, nor could dehydration. A death by kidney failure is particularly painful.

Narcotics like morphine are used in terminal sedation not just for the pain control but because they alleviate the "air hunger" of a body unable to oxygenate it's tissues. Tissues starving for oxygen HURT, it is one of the worst kinds of pain. Also, the narcotic (like morphine) stimulates the pleasure centers and keeps them activated so there is (hopefully) a sense of "well-being" in SPITE of the (assumed) discomfort of dying. Morphine causes a dying person to feel comfortable and "fine" even if they are literally suffocating.

Removing the baby's respirator after giving him morphine would prevent him from feeling the agony of air hunger and suffocation. He would die perhaps fifteen minutes, or an hour LATER without the morphine. Or, there would be no difference at all. Except, he would pass away in physical and emotional peace.

We never use terminal sedation to help the patient "die faster" (lol, I work in a Catholic hospital). That is a common misconception amongst lay people and pretty understandable. Counting days or hours of life "cut short" by terminal sedation is . . . well, righteously unimportant considering the alternative

 

[koolmum]

"LONDON, Ont. — Joseph Maraachli, the infant who became the centre of an international right-to-life controversy, died at his family's Windsor, Ont., home Tuesday."

http://cnews.canoe.ca/CNEWS/Canada/2011/09/28/18750326.html

 

[Kimberlyd125]

Awe. Rest in peace sweet Joseph.

 

[PeteyGirl]

They got to have Joseph for 8 more months than the hospital in London, Ontario would have allowed them. Eight precious more months to spend with their son.

I'll never forget this case. It profoundly affects the way I do my job. I've even had a couple of amazing conversations with the palliative care doc who works with us. I brought up the baby boy in Ontario in conversation about patients in our care.

MOST of the time, the family and patient meekly go along with the doctors recommendation to stop all unnecessary measures except for comfort. Once in a while, for reasons that are none of my personal business, the family and patient refuse. Even though it is clear there is no hope for recovery, the family and patient are clearly in denial, it is not our place as medical providers to brow beat or force them.

Another situation popped up a couple of months ago, where the doctor and the palliative care RN together wrote a 'do not resuscitate' order on a lady who was clearly dying. She was not able to participate in the decision, and her husband insisted that his aunt lived for twenty years on a respirator and if that was the case for his wife, then so be it.

I used every diplomatically pushy persuasive skill in my book and got the DNR reversed upon the insistence of the husband. He sat back and sobbed on the couch in relief.

His wife died later that night in the ICU. No one did CPR or perform invasive, painful procedures on her poor suffering body. The husband held her hand, and by the time she passed, he was in more acceptance, felt grateful to the staff. This is the report I got from the ICU doctor who took over her care in those last hours.

I understand the thinking that goes on in the heads of the docs and nurses. We see so much suffering, and we know when a person's prognosis is dismal and that it is time to make them comfortable. We see so MUCH suffering that we just want it to stop, you know? When the doctor finally orders a morphine drip on a dying person, the relief *I* feel myself is immense.

But if the family is not on board, we have to back off. And we can without causing more suffering for the patient. WE just might have to suffer a little more, but to me that's a part of our job.

 

[jjenny]

The child was terminal, there was no hope of recovery, and as far as I understand, he was in vegetative state. I guess what I am trying to say is that I do see the hospital's point of view of not prolonging his life.

 

[PeteyGirl]

So do I, very clearly.

It just should not be the "hospital's" sole decision on when to end that life. ESPECIALLY when the family is in disagreement.

Each patient, family and situation ought to be regarded individually. We have to be kind enough to each other to do this.

 

[Tuffy]

They got to have Joseph for 8 more months than the hospital in London, Ontario would have allowed them. Eight precious more months to spend with their son.

I'll never forget this case. It profoundly affects the way I do my job. I've even had a couple of amazing conversations with the palliative care doc who works with us. I brought up the baby boy in Ontario in conversation about patients in our care.

MOST of the time, the family and patient meekly go along with the doctors recommendation to stop all unnecessary measures except for comfort. Once in a while, for reasons that are none of my personal business, the family and patient refuse. Even though it is clear there is no hope for recovery, the family and patient are clearly in denial, it is not our place as medical providers to brow beat or force them.

Another situation popped up a couple of months ago, where the doctor and the palliative care RN together wrote a 'do not resuscitate' order on a lady who was clearly dying. She was not able to participate in the decision, and her husband insisted that his aunt lived for twenty years on a respirator and if that was the case for his wife, then so be it.

I used every diplomatically pushy persuasive skill in my book and got the DNR reversed upon the insistence of the husband. He sat back and sobbed on the couch in relief.

His wife died later that night in the ICU. No one did CPR or perform invasive, painful procedures on her poor suffering body. The husband held her hand, and by the time she passed, he was in more acceptance, felt grateful to the staff. This is the report I got from the ICU doctor who took over her care in those last hours.

I understand the thinking that goes on in the heads of the docs and nurses. We see so much suffering, and we know when a person's prognosis is dismal and that it is time to make them comfortable. We see so MUCH suffering that we just want it to stop, you know? When the doctor finally orders a morphine drip on a dying person, the relief *I* feel myself is immense.

But if the family is not on board, we have to back off. And we can without causing more suffering for the patient. WE just might have to suffer a little more, but to me that's a part of our job.

BBM: DNR is decided and written by the doctor ONLY? No input from the patient or family?

Do I understand this correctly?