Hospital Informs Parents Their Baby Is Being Taken Off Life Support Via Letter

WOW... I just read your blog & I am sick. As the mother of a child that was taken off life support if things would've happened for me like that I would have been highly irate. To say the least.

I guess I didn't express myself properly.  I don't know that the healthcare system had anything to do with what happened to this family. I only meant that this could be a possible reason/cause/explanation - I don't know that to be fact. 

I didn't mean for this to become a debate on the issue of national health care (i'm sure i can go else for that). The original thread dealt with a sad situation and while a letter is certainly a cold approach, legally is may be necessary for the hospital to cover all its basis and nothing covers one's butt like a letter in writing. It's often a formality. 

You believe wrongly or have been misinformed, National Health Services will fight for longer than a system where you have to pay. What happens when your insurance refuses to pay or you run out of money?

In the NHS hospitals do not get paid for services provided, they get given a set amount of money no matter what and that pays for everything.

The rest of your comment is so wrong it makes me too angry at all the lies that have been spread about a system that has done a hell of a lot of good for a lot of people who otherwise would have been unable to afford treatment. Strangely i hear a lot about people in America who have problems paying for treatment and have to pay to go see a doctor let alone get treated.

Health care in Canada is a provincial mandate, not federal.

Contributing Editor Sassymonkey also blogs at Sassymonkey ( http://sassymonkey.ca ) and Sassymonkey Reads ( http://sassymonkeyreads.ca ).

A letter is surely a cold hearted approach, but I think this also may have something to do with the Canadian health care system.  With a national health care system, the type of injuries and illnesses that get "treatment" and the type of treatment that is appropriate is determined by written guideline with very little "wiggle room" to evaluate an individual situation.  That is certainly a downfall to a "single payer" system.  The baby probably meet certain criteria and the hosiptal won't get paid for services provided.  I know that sounds harsh, but I believe that is how the system works. 

I have no doubt that the parents had several discussions with doctors and that the parents were told in no uncertain terms what the extent of their baby's condition is.  The issue here and the thing that has all of us picking our jaws up off of the floor is that instead of discussing with these parents (in one of these many face to face discussions) the fact that they needed to seriously consider taking the child off of life support.  Something like that SHOULD be the parents' choice.  The issue is that, instead of doing that (which is humane to grieving parents) the hospital sent a cold letter to them INFORMING them that they were going to be unhooking their child from life support at this day and this time.  It was almost like an invitation to the death of their baby.  That is horrific.

If these parents need more time to consider other options and to be made more comfortable with the terrible decision that lay before them, we should not begrudge them that.  We are, after all, fellow human beings and should remember the feelings of the grieving.

Somer blogs at Merry Wife of Canon ( http://www.merrywifeofcanon.com ) as well as Smell My Plate ( http://www.smellmyplate.com ).

Aurelia, first of all thank you for your comment. Yes, I did not link to the Toronto Star article ( http://www.parentcentral.ca/parent/familyhealth/ar... ). So am now, and it also quotes Kerry Bowman, a bio-ethicist a the University of Toronto, saying that she has never heard of people getting handed a letter either.

I have a great deal of respect for people who work with babies like Isaiah all across our country. I want to make sure you understand that when I said cold-hearted it was in regards to the letter. I have no doubt, NONE, that Isaiah's medical team treat Isaiah and all their patients with anything but the best care they can give.

In regards to this "What disturbs me about Isaiah's story, as it is being reported, is that the Mays were not advised that Isaiah shouldbe removed from life support, but told that he would be removed from the machines that were keeping him alive." How did I misinterpret the part of the letter that said Isaiah would be removed from the ventilator?

Aurelia, you clearly feel very passionately about this story and I love that and I love that you let your passion show here. I wish you had blogged about it as well. This story needs people like you saying these things on their blogs.

Contributing Editor Sassymonkey also blogs at Sassymonkey ( http://sassymonkey.ca ) and Sassymonkey Reads ( http://sassymonkeyreads.ca ).

Still...it should be ultimately left up to the parents as to whether they remove their child from life support.

I, too, have had a similar situation with my own son. He suffered an accident that left him with an anoxic brain injury at 11 months old. Although his injury is severe, there is hope for rehabilitation and it isn't as severe as Isaiah.

However, being around children who were as severe as Isaiah, I can tell you that there are other options rather than pulling the plug. If these parents want to give Isaiah a chance, why not? Doctors are not end all be all, I know THAT for sure.

The discussion about whether this is ethical to keep a child alive on machines is really only a subnote. It should be the decision of the parents that determines what happens to this child unless they're deemed incompetent to make the decision.

Shauna

 Mom to Gabriel (11), Christian (18 months), and little Lola (6 weeks).

Even after discussions. Even after consultations. It was a letter that informed them. That is newsworthy. 

Politics & News Contributing Editor Erin Kotecki Vest ( http://queenofspainblog.com/ )

Before I write this, I'd just like to state that I understand better than a lot of people the hell these parents are going through. I have buried more than one child, and I know exactly what happens in a NICU. And the real, ACTUAL odds of survival, not the glamourized media portrayals.

http://www.parentcentral.ca/parent/familyhealth/ar... ( http://www.parentcentral.ca/parent/familyhealth/ar... )

Somehow Sassy, you seem to have missed the paragraphs, here in the Toronto Star as well as the other news sources that says quite clearly that doctors and nurses and social workers have had many many meetings with this couple, explaining very gently and firmly what brain dead means. "Before receiving the letter, the parents had met many times with the doctors."

So pretty much your entire characterization of the hospital's actions is inaccurate.

This couple is young, and uneducated and quite clearly over the last 3 months has not been able to comprehend what brain death means. (And yes, I blame the media at large for that. The endless "miracle" stories are really a very small number of babies, many don't make it, but I never see the press camped out at their door.)

They have had second and third independant opinions, and the baby has had top flight medical care, all free, all as advanced as possible, even though it was pointless from the beginning because he was oxygen deprived from the start.

"Alberta Health Services, which oversees the province's hospitals, released a statement Tuesday, saying:

"The medical and ethical discussions for this family and care providers are the most difficult imaginable. Our heartfelt sympathies go out to the family.

"Our medical, nursing and allied health teams have and will continue to support this family in every way possible. It is appropriate to turn now to the courts for direction."

"Before the letter with the deadline was written, doctors consulted with an ethicist, a hospital doctor not on the baby's care team and a neonatologist in Manitoba who reviewed the infant's records, according to David Steele, lawyer for Dr. Ernest Phillipos, head of Stollery's neonatal clinic."

And that all that is because the ethics of resuscitation and treatment are so difficult. Some call it saving a baby? I call it painful agonizing torture. Ventilators, g-tubes, catheters, IVs, CT scans, MRIs, drugs, even just the act of being in a brightly lit, loud, intrusive NICU is hell for a baby. It should only be done if the benefit outweighs the cost. If the child actually has a chance at living.

I'm sorry the parents misunderstood the endless meetings, the social workers, the ethicists, the Doctors, the multiple explanations of brain death.....but that doesn't change the reality.

That letter? Was the VERY LAST STEP prior to going to court. And do you know why?

Because every single day babies in NICUs die, and because we have the technology to keep them breathing many grief stricken parents think breathing = alive. And it doesn't.

How long should the parents be given to accept the death of their baby? A minute, a day, a month, a year? And all the while, that baby is in pain. And the staff, who are there, 24/7 have to watch that child, knowning that every time they give more drugs, or change his IV he is in agony. With no hope.

I had to make a decision similar to this with my son, and it was hell, but I truly loved him, so I did it. Keeping him alive so I could feel better would be wrong. So yes, the hospital would have to try to make the parents understand, and not just let it all sit.

Sassy, it took absolutely no effort to find that statement or the Star story, and even a casual google of any NICU blog would have told you what these terms really mean. Saying that "maybe they had discussions" is not enough to cover you, and calling them cold-hearted is just wrong. And this? What disturbs me about Isaiah's story, as it is being reported, is that the Mays were not advised that Isaiah should be removed from life support, but told that he would be removed from the machines that were keeping him alive. 

That is not true.

This hospital has acted with great ethics and kindness and charity. They don't deserve this.

The cruelty of this world sometimes just flattens me. Who wrote that letter? Who approved it? Who sent it? They should all be sent for a long time-out. That is just horrible.

My prayers for Isaiah but she definately  deserves better than what she is getting now....

After all I've been through this week, I'd like to write a letter to that hospital and tell them this:

Their decision to thus end the life of a still living being, on their own clock, is neither fair nor humane. Too many clocks stop ticking without those who love them having a choice in the matter. To remove that choice from the parents is to subject them to a form of torture that no family should ever have to endure.

I'd give anything to have a choice today. I don't.

@FireMom ( http://twitter.com ) from Stop, Drop and Blog ( http://stopdropandblog.com ) and The Chronicles of Munchkin Land ( http://thechroniclesofmunchkinland.com )

After all the hyped up press reports on parents or spouses who do or do not want to turn off life support and the hospitals caught in between, I am quite surprised that someone in any administrative or managerial capacity would send such a letter to parents of a baby.   The letter is insensitive and down right tactless.  A gentle discussion of his condition and options would seem more appropriate.  If the hospital administration (social services I'm assuming) could not get the parents on the phone to discuss a face-face meeting then sending a letter requesting a meeting might be understandable as a legal means to cover their butts.  By failing to use some common sense and decency, the hospital created a bad situation and will cost themselves and the parents unnecessary legal fees.  

Lynn PO Blogging about helping elderly parents and assisted living at http://help-4-mom.blogspot.com ( http://help-4-mom.blogspot.com/ )