Per The Vancouver Sun: Canadian baby still alive despite Family Day death deadline

http://www.vancouversun.com/health/Canadian+baby+still+alive+despite+Family+death+deadline/4322127/story.html

LONDON, Ont. — A 13-month-old gravely ill Ontario child who was expected to take his last breaths Monday is still alive.

Armed with a new, experienced lawyer and buoyed by supporters, Windsor resident Moe Maraachli defied a court order and his gut-wrenching, sleepless weekend turned into guarded jubilation Monday as the fight for his son Joseph intensified — and became more political.

Joseph’s breathing tube was not removed by 10 a.m. Monday at the Victoria Hospital of the London Health Sciences Centre, as it was expected. Instead, serious negotiations, led by expert health-care lawyer Mark Handelman, were taking place to transfer the baby to a Detroit hospital. Handelman was retained by the family with help from Alex Schadenberg, executive director of the Euthanasia Prevention Coalition who took a special interest in Joseph’s case.

“I’m very excited. I feel like it’s a real Family Day today,” Maraachli told reporters at a London hotel, referring to the holiday celebrated in several Canadian provinces. “God sent angels for me to help me.”

Joseph is in a vegetative state, according to London specialists who’ve been treating him since October, and will not recover. His parents have accepted that, but refuse to let him die in hospital by choking after the breathing tube is removed.

They have been asking doctors to perform a tracheotomy so that Joseph can live out his last days at home and die in peace. It’s how they said goodbye to a daughter nine years ago, who had the same condition as Joseph and died six months after being released from the hospital.

This kinda **** pisses me off. As someone who has had to make the decision to remove life support from a child, the government has NO business deciding when that happens. George Bush and the Congress in 2004 pissed me off when they tried to intervene in the Terry Schiavo case, and this story pisses me off too. No one in the government that is charged with making this decision knows what this family is going through. Each case is different. There is no reason for the family to have get a lawyer involved to prevent the hospital from removing the breathing tube. I really believe that this decision is the hardest decision a parent will ever have to make. To arbitrarily assign an"expiration date" for treatment is not the governments job.

I know, I am too emotionally attached to decisions like this and can't turn an unbiased eye to this. The whole "death panel" BS from the healthcare debate aside, this is what happens when the government controls healthcare. A board got together and decided that treatment should stop. If that is not the definition of a death panel, what is? They decided for this boy's family that it is time for him to die.

/rant

Isn't Canada Universal health care and that is the reason they are trying to remove it. If the father was paying on his own this wouldn't be an issue. The Terry Schavo case was different, because the husband wanted it over with and the family wanted to keep her alive. The problem was she never stated what she would have wanted in her will. It wasn't the government paying for it.

Dude that is awful, my daughter is almost 14 months and I couldn't even imagine doing that.

We need more death panels...wasting money and resources

The child will die no matter what, this is their second child they will have die with the same disease the parents wanted to take the child home to die and the hospital said they it would make it harder on the baby and they can give medicine to help the child.

This is not euthasia this is the natural course that life would take without intervention.

Why bother with the natural course?....don't we go against it in other cases?

Why extend what is inevitable

Wow Popeman, I'm so sorry. Please accept my condolences over the loss of your child. Losing a loved one is hard enough. Having to make the decision to withdraw care makes it infinitely more difficult.

With that said, I'm going to have to take the opposite side on this issue for a number of reasons. I've seen probably thousands of patients in vegetative and end-stage disease states over the years and participated or observed in all facets of their care from the routine day-to-day stuff all the way up to doing CPR and being the one to pull the endotracheal tube and turn off the vent. These patients endure a lot of pain, loss of dignity, discomfort, fear, anxiety, and a whole host of other bad things that could be avoided by simply making the decision to withdraw life support at the appropriate time followed by good palliative care.

I also have a problem with the continued mischaracterization of how various universal healthcare systems handle end-of-life care issues as being some form of government sponsored euthanasia. In most cases what it amounts to is that the patient’s physicians and other members of the healthcare team come to the conclusion that further interventions will not improve the patient's medical condition. At that point, in many universal healthcare systems the government as payor will then in some way require that care be withdrawn. In other words, the government (i.e. the payor) is reacting to professional advice from the clinicians that know the patient best to avoid prolonging an inevitable death. To do so needlessly inflicts pain and discomfort on the patient and often gives the family false hope. Moreover, private insurance companies in this country have denied care in this manner for years.

From a practical standpoint though, we simply cannot afford to continue to throw the kitchen sink at patients that won’t benefit from it. While the families of terminal patients and even the patients themselves often want that last ditch effort, what they usually don’t realize is that doing so likely means that others will suffer or die because of their decision to use scarce healthcare resources to provide futile care.

TWA I am not sure what you are going on about, this case has nothing to do euthanasia

...but many will chose to see it that way DRSmith.

It should....there needs to be a option to end life

added

Yusuf ...isn't with drawing support going to lead to clinical death?

Why not have a quicker option?

...but many will chose to see it that way DRSmith.

I knew this thing was going to get ugly as soon as I heard they were bringing the groups from the US

I live an hour from this town and had to take my mom there for her cancer treatments and tests, when the decisions were being made.

Popeman, can you please fix the title?

It should....there needs to be a option to end life

added

Yusuf ...isn't with drawing support going to lead to clinical death?

Why not have a quicker option?

I personally don't have a problem with euthanasia assuming it's what the patient actually wants. I have often thought of how ironic it is that we treat our pets better than human beings in this regard.

However withdrawing life sustaining care is not euthanasia. It is simply allowing things to take their natural course without our getting in the way other than to provide palliative care.

It should....there needs to be a option to end life

added

Yusuf ...isn't with drawing support going to lead to clinical death?

Why not have a quicker option?

There does need to be an option to end life. Unfortunately groups that oppose it have left us, in the states, with the feeding tube disaster. Watch your family members starve to death because it's illegal to give them a shot and painlessly send them into the after life. Criminals are afforded better deaths in this country than those that are left in a vegetative state.

It really does shock the conscience.

I do have to ask though aren't pro-life groups the reason we have no option to end life?

FWIW, The Suicide Tourist is an incredible documentary that explores the questions, ethical and others, of assisted suicide. I'd highly recommend it.

"At this point, I've got two choices," Ewert reasons. "If I go through with it, I die, as I must at some point. If I don't go through with it, my choice is essentially to suffer and to inflict suffering on my family and then die -- possibly in a way that is considerably more stressful and painful than this way. So I've got death, and I've got suffering and death. You know, this makes a whole lot of sense to me."

---Craig Ewert

We need more death panels...wasting money and resources

Two things:

1 - There is no insurance plan I'm aware of on the planet that would pay for surgery on a brain dead infant. If the parents can afford it on their own I see nothing stopping them from having it done and I certainly wouldn't object. I note that at the end of the article the it mentions that deciding who will pay for a tracheotomy was the item holding up the babies transfer to a different hospital. This isn't about socialized medicine this is about parents that can't let go and it's horribly sad because I can't imagine the pain.

2 - That pictured belongs in the owned thread as it is hilarious.

I do have to ask though aren't pro-life groups the reason we have no option to end life?

I wouldn't really know,I'm rather open to ending life and not into the group scene.

If pro-life groups were that powerful though I'd assume abortion would be banned as well.

added

Ins and public plans do pay for quite a bit of extended intensive care for patients such as this child

Dude that is awful, my daughter is almost 14 months and I couldn't even imagine doing that.

Bro, I also have an almost 14 month year old daughter. Congrats. Daughters are awesome. My baby is crazy.

Here is the thing the parents are asking for the surgery so they can take the baby home to die

Joseph Maraachli's family received word late Wednesday afternoon that a request to transfer Joseph from a London, Ont., hospital to the Children's Hospital of Michigan had been denied.

Moe Maraachli had asked doctors to perform a tracheotomy so Joseph could be brought home to Windsor to spend his final days surrounded by family.

Maraachli and his wife, Sana Nader, lost their appeal before a Superior Court judge last week to stop the removal of Joseph's breathing tube.

Justice Helen Rady upheld an earlier decision by the Consent and Capacity Board of Ontario, an independent body, which ruled that Joseph's parents must consent to the tube removal.

However, the family refused consent and was hoping to move Joseph to the Detroit hospital. Family lawyer Mark Handelman said he hopes there's still an opportunity to get Joseph home so he can die surrounded by loved ones.

"The next option is appealing Justice Rady's decision to the Court of Appeal," Handelman said.

Family friend Alex Schadenberg said he was with Joseph's father when he got the news.

"Moe's first comment was, 'I don't know how I'm going to say this to my wife'," Schadenberg said.

London doctors recommended Joseph be removed from life support in November because they say he won't recover from the rare neurological condition that has left him in a vegetative state. He is fed through a feeding tube.

The family fears Joseph will suffer a painful choking death if the ventilator is removed.

Doctors refused their request to perform a tracheotomy so the family could take the baby home to die surrounded by loved ones, saying it wasn't in the boy's best interests.

http://www.am770chqr.com/News/National/Article.aspx?id=264509

The baby could die on the ride home and in the hospital after the tube in extracted meds can be given so the baby just goes to sleep to not wake up with no suffering

Popeman, I am so very sorry to hear of your loss. I can't imagine anything in life worse than having to pull a child off of life support. Bless you and your family, friend

This is an emotional subject for me too as I have two friends who've had to have that decision made for them. One friend passed away in 2007 from a traumatic brain injury after his wife and parents decided to remove him from life support, and one of my girlfriend's husband went against medical advice and refused to pull her off life support within that critical "window" and she has been in a vegetative state since the summer of 2009...he now lovingly cares for her at home and our group of friends visit her on occasion.

Probably two of the most heartbreaking situations I've ever been involved in and all I have to say is that no matter what side of the debate you are on, there are no winners here. I can't fault the family for wanting to enable their child to pass away in a way they see as most peaceful. I also can't completely fault a medical panel making a decision based on sound medical evidence to cut financial losses.

All I can say is this family will be in my prayers.

This is a tad off topic, but I want to share the anecdote.

A good friend of my family had a child "unexpectedly" despite using birth control. They named their daughter Milagro, which is miracle in Spanish, because she sort of was. The child was born with a terminal heart condition, the specifics of which I don't know. She was transferred down to children's hospital where, after a few days, they were informed that the girl was a lost cause. Very distressed, the family understood; they made the decision to pull the plug on their daughter.

Before children's hospital could pull the plug, the initial hospital at which she was born intervened. They refused to allow children's to pull the plug, and threatened to call the police on my friend's family for murder and such. When my friend stood his ground and confirmed his decision, the called the INS. My friend and his wife and perfectly legal citizens, but they profiled him as hispanic and called the INS anyways.

My friend missed the last moments of his daughters life, he wasn't able to be there for her last breath, because he was in court proving his legality and fighting for his right to make this decision. Thankfully, at least, his wife was able to be at the hospital when the child passed. Tragic story if you ask me.

The parents wanting the trach so that the child can go home to die sounds perfectly reasonable. Well, it does until you examine things a bit more closely.

IMO the doctor's explanation about the risks of doing the trach didn't quite seem to make a lot of sense to me. After all, a trach is generally a quick, simple and I think relatively inexpensive operation...though obviously any of that could be different in this case based on this child's clinical status.

Unfortunately even with the trach, the baby still wouldn't be able to breathe on his own. Therefore, he's not going to go home and survive for very long without a ventilator in addition to the trach. So what the family is doing is trying to back-door their way into continuing life support without explicitly saying so. Moreover the baby has no brain stem reflexes and yet the parents say he's responding to them. They've also accused the doctors/hospital of wanting to "murder" their son.

So reading between the lines I suspect the doctors know that the parents are delusional (as one would expect in such a case) and are simply choosing to not make a tragic situation worse for the patient and the family by choosing to take the fall as the "bad guys".

Of course the right to life and death panel nitwits have grabbed ahold of the story and started running with it facts be damned, since it feeds into their respective agendas. But hey, what do they care? It's not their suffering that will be prolonged. Again I find it incredibly, bitterly sad that if asked, most of these folks would probably say a suffering dog or cat should be put down to prevent needless suffering while a suffering human doesn't deserve the same mercy.

Again I find it incredibly, bitterly sad that if asked, most of these folks would probably say a suffering dog or cat should be put down to prevent needless suffering while a suffering human doesn't deserve the same mercy.

Maybe they bought into the fallacy of medical pain management and alt definitions of human?

Isn't it really just a clump of meat?

added

sorry I forgot...it's breathing so it is human...my bad

Isn't Canada Universal health care and that is the reason they are trying to remove it. If the father was paying on his own this wouldn't be an issue. The Terry Schavo case was different, because the husband wanted it over with and the family wanted to keep her alive. The problem was she never stated what she would have wanted in her will. It wasn't the government paying for it.

that is not true at all, Canadian Hospitals, in fact this specific hospital has kept patients on life support for years if there is hope for recovery, if this child had any hope of surviving, they would keep him alive, regardless of costs, there is no CFO or board at the hospital saying "this cost us too much, kill the kid"- Canadian Hospitals are not run like US hospitals, or what Americans think their hospitals will run like after Obamacare, care is the number 1 priority, not fiscal responsibility. The true issue in this case is how bad this boys health really is. The family had another child in a similar situation and they took the child home where it passed away, this is not a possibility for this kid because he is in such bad shape. The doctors fear that the operation to give him a breathing tube to let him die at home will result in an infection, and could cause the child significant pain and discomfort in his final moments, and they are fearful of the impact on the parents of watching their child suffer.

Don't take the propaganda Sarah Palin and the Tea Party crack heads are selling you about Universal health care and try to apply it to this situation, it simply is not true. The Canadian health care system is not perfect but they are not to blame here, they are trying to do what is right by the child and the family, and they will not proceed with an operation that will cause pain and suffering for both the child and family, simply so he can die at home. The hospital even offered to set up his life support system at the home and then unhook him if the family really wanted him at home but they refused, saying "we want to do it the way we did with our last child" but that simply is not possible. The Health care system does not want this kid to die, but it cannot keep him alive so they are looking to do the most humane thing and let him die in peace instead of risking some terrible alternatives.

Popeman, can you please fix the title?

Care to explain what I am fixing?

NM, figured it out.

---------- Post added February-24th-2011 at 03:15 PM ----------

The parents wanting the trach so that the child can go home to die sounds perfectly reasonable. Well, it does until you examine things a bit more closely.

IMO the doctor's explanation about the risks of doing the trach didn't quite seem to make a lot of sense to me. After all, a trach is generally a quick, simple and I think relatively inexpensive operation...though obviously any of that could be different in this case based on this child's clinical status.

Unfortunately even with the trach, the baby still wouldn't be able to breathe on his own. Therefore, he's not going to go home and survive for very long without a ventilator in addition to the trach. So what the family is doing is trying to back-door their way into continuing life support without explicitly saying so. Moreover the baby has no brain stem reflexes and yet the parents say he's responding to them. They've also accused the doctors/hospital of wanting to "murder" their son.

So reading between the lines I suspect the doctors know that the parents are delusional (as one would expect in such a case) and are simply choosing to not make a tragic situation worse for the patient and the family by choosing to take the fall as the "bad guys".

Of course the right to life and death panel nitwits have grabbed ahold of the story and started running with it facts be damned, since it feeds into their respective agendas. But hey, what do they care? It's not their suffering that will be prolonged. Again I find it incredibly, bitterly sad that if asked, most of these folks would probably say a suffering dog or cat should be put down to prevent needless suffering while a suffering human doesn't deserve the same mercy.

Yusuf, this family has already lost a child to this disease. They know that eventually their son is going to die. There is no reason not to perform the trach and send the child home with a portable vent. This family is praying for a miracle but expecting death. The hospital has decided that they should no longer be obligated to provide support. They did not technically decide to kill the child, though they know that the result of ending support will be certain death. By all accounts, the child is alive by medical definition. What difference does it make if a tracheotomy is performed? It takes 5 minutes, can be done with little capital expenditure, and allows a parent to actual hold their child and kiss that child in a more practical manner. Trust me, I have experienced holding a child with normal intubation and a trach. The trach is much more flexible when it comes to ease of movement. There is nothing more precious to a parent at the end of life than being able to hold their child, hug their child, kiss their child, peacefully allow their child to pass on to a better place with no tubes or needles or probing. Additionally, being the person that decides to disconnect the trach, and tun off the vent is huge when it comes to end of life decisions. My wife and I made that choice. I removed the tube. I turned off the vent. I can't blame anyone for that. I did that. I fought my ass off for my son, and in the end decided when he had enough. I am at peace with that. I am not sure I would ever be at peace if a nurse or a doctor had done it. If you haven't been there, you can't truly understand.

This was not intended to devolve into a euthanasia debate, or Obamacare debate, or a religious debate. Please attempt to refrain from getting on that train. Thanks you.