I agree. From what I’ve read it seems like the parents are desperate to have more time with their child before he dies, but how is smothering to death when his ventilator is removed now any different than smothering to death in a few months when his respiratory system shuts down even with a trach?
Also, the parents aren’t doing a good job of convincing me when they say stuff like:
How is a tracheotomy = dying according to God’s plan? I’m pretty sure tracheotomy is no more of an unnatural intervention than being in the hospital most of his life and being on a ventilator right now. It seems like I’ve heard many medical ethics-related stories over the years where people want to pick and choose which medical interventions fit into “God’s plan” and it makes no sense to me.
I know, right? It’s ridiculous cherry picking. If you wanted him to die according to God’s plan, then why is he in the hospital at all?
On the other hand, would you want to try arguing logically with a mother (or father, for that matter) about to lose her second child to something that she probably feels is her fault because it’s genetic? Good luck with that. I’ll be over here, whistling nonchalantly to the ceiling. I’ll grab some gauze pads in case she claws your eyes out.
Exactly. I’m a nursing student too, and I’ve had a couple of my patients die in clinical but they were all older adults. Dealing with parents with a dying kid and trying to discuss illogical religious beliefs with them? Not for a million dollars.
When I have years more experience and if they were more calm I might try to do some teaching about what PVS means and what the pros and cons of some interventions are vis-a-vis quality of life. But it would be really tricky.
Ooooooo…yes, the trach would basicly keep Joseph in a prolonged dying statis. That was basicly my reason for posting this. Would you really want to draw out the dying process? This is a tough tough case.
I know there’s levels of PVS. (Glascow Coma Scale) It’s possible the parents think " oh his sister was in PVS" (when she was in a milder PVS) and she lived with a trach.
Again, she was prolly a bit more “higher functioning”
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I think a really good idea for parents who are carriers of extreme profound degenerative birth defects would be to offer the option of sterilziation AND to make it easier for them to adopt.
I am sorry, but in the case of extreme profound birth defects (such as Tay Sachs, Battens etc) it’s cruel to knowingly willingly have a kid with the condition. I do remember reading that Tay Sachs is rarely seen nowadays b/c of parents making the right choices.
I’m not pro eugenics…but in the case of extreme profound mental degenetative conditions…these are conditions that are all shades of fucked up, where the baby will live a few months, and have seizures and not have much of a life at ALL! Shouldn’t we prevent that from happening?
No. That way lies eugenics. What “level” of impairment is okay to kill against the family’s wishes? Even anencephalic infants (infants born without a brain, but with the brain stem) can breathe and have a pulse - do we starve them to death while their parents beg us to feed them? What if they have enough brain to have an IQ of 20? What if they may someday have an IQ of 40? 60? Ann Coulter? Who gets to make that decision, and by what rubric - especially when so much of this is guesswork?
My own daughter was born at 23 weeks gestation, with very good reason to believe she’d suffer at least one long term disability like blindness, deafness or cerebral palsy. She’s 6 now, and (knockwood) reading and writing and talking and running and painting and has absolutely no disabilities at all. None. It’s astounding and amazing and an outcome the doctors never thought likely.
Okay, we might (might!) all agree that an anencephalic infant shouldn’t be kept “alive”. But there are still parents there, parents that might honestly love this little person and need (emotionally, spiritually, religiously) to spend some time with this person before being ready to let it die. That amount of time can vary, and we can educate about prognosis and treatment options, and we can work in private and public to take away the ethical, medical and social stigma against “pulling the plug”, but beyond that, I’m not going.
The real problem here is that parents facing the death of a child aren’t always capable of making rational decisions. For these parents, there will always be decisions based purely on emotion (and religious justification is another form of emotion, IMHO), and a great deal of doubt and second-guessing. “If we had just done x, our baby would still be alive.” To give parents the absolute right to make every decision isn’t fair to the child, nor is it fair to the clinicians, who have to act according to the parents’ wishes or look like monsters if they don’t.
I believe that these parents should have access to bereavement counseling, spiritual support, and at least one bio-ethicist to help them work through their loss, and to help guide their decision-making. If the parents aren’t capable of being rational, there should be someone involved with the case who is, and who is capable of acting as a mediator where difficult decisions have to be made.
The parents have experienced this already (with their other child) and feel that removing the tube causes suffering through a prolonged state of suffocation and want the procedure so the child can suffer less and die at home.
I don’t see where they are looking for any kind of miracle or are deluded that death is near. It’s clear to anybody who has experienced severe pulmonary distress that this is a very unpleasant condition.
I can’t tell you what they were thinking. But amniocentesis carries a small, but real, risk of miscarriage. So the pros have to be weighed against the cons.
In our own case our baby had a slight chance of having Down’s Syndrome. So it was suggested that we undergo the procedure to check. We declined, in part because the risk of the syndrome was about the same as the risk of miscarriage from the procedure. Fortunately, our son turned out to be perfectly healthy.
I know that they think they want to avoid the baby slowly suffocating. IANAD, but it seems like they’re just trying to avoid suffocation now instead of suffocation later. If they put in a trach and the baby lives a few more months, even with perfect trach care and suctioning of mucous, won’t the baby eventually succumb to either pneumonia or other respiratory illness, or just plain loss of respiratory function when the progressive neuro degeneration makes them unable to breath properly even with a trach?
Unless there’s something else associated with the condition that would directly cause death, it seems like the baby will likely die from respiratory failure either way. Or maybe they’ll die from lack of adequate nutrition if the neuro degeneration makes them unable to swallow - would the parents want a feeding tube then?
It would be good if we had more information, but either the genetic condition is unnamed in the news reports, or it’s an unknown/unnamed condition
i know what your saying. I also suffer from IANAD syndrome but I’ve watched both my parents die from cancer related diseases. If I had to make decisions on their end-of-life care I would certainly fall back on any personal experience I had.
I’d hate to be in their shoes. At least they’re not hoping for any kind of recovery. That would clearly be wrong.
I’d like to add there is physical suffocation which is highly traumatic and then there is slow loss of oxygen transfer to the blood which is just the body shutting down.
Here’s a twist. I AM actually disabled, and a hardcore disabilty rights activist and with a genetic disabity to boot. The thing is…this isn’t a “they said that they’d be severely disabled and now they’re not.” This is an extreme profound disabilty. Granted it’s VERY rare…but still…
I’m proposing not mandatory sterilization…but it as an OPTION (along with ease in adoption, so they can have a family ) in cases where there are extreme profound genetic defects in the family. There’s a GIANT difference between this case and even a case of a profoundly MR kid.
I’m sorry, you’ve lost me. I don’t understand your post. Are you saying we should give people with profound disabilities the opportunity to not have babies? That is, we should give them access to genetic counseling and contraception? Absolutely, I agree with that…I don’t think anyone, disabled or not, should be forced to have babies. Not sure what it has to do with the thread, but I agree with it.
I am very comfortable with the medical team’s decision, the Consent and Capacity Board’s decision, and the Superior Court’s decision.
The parents were free to find other facilities to care for their child, and they did so. That the parents could not find any physicians in an entire country who were willing to do what they wanted speaks volumes.
It is very unfortunate that Priests for Life (the sponsors of the transfer to the right-to-life hospital outside of Canada) has claimed that the child was rescued under cover of darkness, for that implies that the hospital was trying to prevent medical treatment, rather than simply being unwilling to perform the treatment the parents wanted but otherwise being quite willing to transfer the child to wherever the parents wanted.
It is also very unfortunate that the child is being used as a poster child in the USA in the fight against socialized health care, for the socialized aspect of health care in Canada had nothing what so ever to do with the decision to not provide the treatment the parents wanted.
I’ve always wondered what happens when the situation is reversed–A child is born that needs immediate life support with little chance of survival and a very high chance of a major disability, and the parents would prefer not to offer that support. Does that ever happen? Are the doctors required to do everything they can to save the baby? What if they save the child but he ends up profoundly retarded; are the parents then obligated to care for the kid for the rest of it’s life?
Based on my own experience, the physician will generally follow whatever directive the parents establish. When my older son was on life support, we made the decision to terminate, and to establish a do-not-resuscitate order once it became apparent that any attempt to “save” him would be futile. His doctors followed our wishes to the letter and did not try to talk us out of it. In fact, I can’t think of any plausible scenario where the doctors would have the moral or ethical obligation to ignore such a directive.
In thirty years I have watched the outcomes of the choices being discussed here. I know people who have been on DNR orders for years, even decades. I know some who have suffered while receiving intrusive, painful, and terribly emotionally debilitating medical treatment for years, even decades, before dying. I know families that have had three children with genetic syndromes which killed two, and hospitalized all three for years. I had professional and personal opinions on each and every decision. I gave the professional opinions when asked. I keep my personal opinions to my self with one exception.
I give every bit of love and encouragement to the ones who “are going to die” that I can. I do that even when assured by competent professionals that they “are not aware of you” or “can’t learn those skills.” I have often said aloud in meetings about treatment options, “We should think about whether saving his life again is doing him a favor.” I personally have supported the wrong decision, and the right decision. When all the choices suck, you do what you can.
This is one of the toughest choices ever made in human experience, and it gets made thousands of times a day. Before you decide that that choice should not be made by parents, you should keep in mind who will make the choice if that right is not protected. Lawyers, insurance company representatives, bureaucrats, and people currying public favor to gain elective office. I trust the crack-head homeless hooker mom about the same. And she has the right to make the choice.
When WhyGirl was demanding entry into the world 4 months early, the “numbers guy” (ethicist and statistician) came to my room and explained our options, the chances - in numbers, hence my affectionate nickname for him that stuck during our stay - of short term disabilities, long term disabilities and death for each of our medical options. He described some of the disabilities that other families who took each course of action ended up dealing with.
One of my first questions, hard as it was to say out loud, and through many tears, was: “What if we try to save her today and things get bad? Can we take her off life support if it comes to that?”
“Absolutely,” he said. “We’ll support you in your decisions and give you all the information we have so you can make good decisions.”
Now, looking back on that, I wonder just how literal that was. I mean, no one’s going to let a *healthy *newborn starve to death because the parents decide not to feed it. But for what we were facing, in the moment, it was a good answer, and what I needed to hear.
