Baby Joseph (end of life issues in an infant) died.

[emmiedahl]

Is this a genetic disorder or just a random thing?

[Maul the Koala]

It's very important to emphasize these decisions are NOT made by one doctor either. They're made by a panel of people that include doctors and other medical people/people specializing in ethics. The whole idea of checks and balances. I think once it gets to that point you can ask for outside opinions from specialists in Canada and the US, but you'll generally get maybe 1 or 2 specialists who will even consider it.

[gustava]

What I find most telling is that NO hospital in Canada and apparently just the one in the US was willing to do the procedure. If that many doctors ruled it unethical, it probably was and I don't believe it's up to a patient or parent to make a doctor go against medical ethics.

I think the US hospital was Catholic and I'd assume many US Catholic hospitals would have the same position. I wonder, though, about Canadian Catholic hospitals. Any Canadian who could offer a perspective??

[docmom]

Many posters are saying that they don't think doctors should be the ones to make these decisions- that it should be up to the parents. Please believe me when I say most doctors don't want to make these decisions- would you? It's much, much easier just to give the drugs, do the procedures and keep the ventilator going than it is to actually engage loved ones and refuse to do that which is medically futile and potentially painful. I completely understand that parents want their child to be the miraculous exception to the rule, but the medically and ethically correct thing for the physician to do is to help the parents come to a point where they can agree to do the right thing and if they can't then to act in the best interest of the patient. Doctors aren't omnipotent and we do make mistakes but by the time a case gets to this point, we're pretty damn sure about the outcome. Believe me there is no benefit directly to the physician in going against the wishes of the parents. It is hard, heartbreaking and risky, but it is right.

[Eclipse]

Is this a genetic disorder or just a random thing?

Its been reported to be a genetic disorder but to my knowledge its never been released to the media what the genetic disorder is.

[pebbles]

According to Wikipedia it's Leigh's disease.

[Boogalou]

I think the US hospital was Catholic and I'd assume many US Catholic hospitals would have the same position. I wonder, though, about Canadian Catholic hospitals. Any Canadian who could offer a perspective??

Canada doesn't have any Catholic hospitals, at least as far as I am aware. I am pretty sure it would be a big no-no anyway since our hospitals are (or are they? why don't I know this?) governmentally run (at least I think they are). Religion shouldn't really be playing a part in Doctors decions, IMO.

[Maul the Koala]

Canada doesn't have any Catholic hospitals, at least as far as I am aware. I am pretty sure it would be a big no-no anyway since our hospitals are (or are they? why don't I know this?) governmentally run (at least I think they are). Religion shouldn't really be playing a part in Doctors decions, IMO.

Alberta has Catholic hospitals but the point is moot since they're all under the provincial health region. It wouldn't surprise me if there are Catholic hospitals in every province, considering a lot of Catholic nunneries used to set up the hospitals and do the nursing. I've never had to deal with hospitals in other provinces but I've been told Ontario has Catholic hospitals. A case like this would be dealt with the health region in Alberta. It wouldn't be up to the individual hospital.

[treemom]

As someone, like several people here who was forced to make one of two horrible choices I sympathize with the parents firstly and then the doctors secondarily. I believe everyone was trying to make the right choice here and offer a solution to what that is.

In these cases there is no right choice or wrong choice. This isn't medical malpractice or child abuse both things I have heard from peers about this case.

Until you are given two options all of which suck ass all over the place you can only imagine what it is like. And I mean that for the doctors too. My thoughts are with the family and those who love and care for them. And for once I find myself lacking in judgement.

[treemom]

Yes. Excellent point.

Of course, just give birth to all the pitiful little beings doomed from birth one can. That makes sense. *headdesk*

To me this is selfishness to the extreme. If you want kids that badly and you have genetic issues then adopt. I love reading Angri-la's stories about her child from adoption. That is the best route, not pumping out babies in the hope one will live to double figures and be able to understand its own name.

I believe the disorders were unrelated. A case of a really shitty lottery win twice. And adopting isn't an option for lots of people. (hi! Me!).

[treemom]

Many posters are saying that they don't think doctors should be the ones to make these decisions- that it should be up to the parents. Please believe me when I say most doctors don't want to make these decisions- would you? It's much, much easier just to give the drugs, do the procedures and keep the ventilator going than it is to actually engage loved ones and refuse to do that which is medically futile and potentially painful. I completely understand that parents want their child to be the miraculous exception to the rule, but the medically and ethically correct thing for the physician to do is to help the parents come to a point where they can agree to do the right thing and if they can't then to act in the best interest of the patient. Doctors aren't omnipotent and we do make mistakes but by the time a case gets to this point, we're pretty damn sure about the outcome. Believe me there is no benefit directly to the physician in going against the wishes of the parents. It is hard, heartbreaking and risky, but it is right.

How do doctors know objectively what is in the best interest of a patient?

[treemom]

What I find most telling is that NO hospital in Canada and apparently just the one in the US was willing to do the procedure. If that many doctors ruled it unethical, it probably was and I don't believe it's up to a patient or parent to make a doctor go against medical ethics.

No one made any dr go against their ethics. They left the country and got the treatment they wanted for their kid, even if it was futile.

They didn't abuse their child. So I guess I don't get what it up with a lack of compassion for the parents for a morally and ethically ambiguous choice. They didn't molest or stab their kid. They didnt do anything that can be agreed upon as wrong by the majority of people across cultures. And their kid still died, of no fault of their own.

And not doing a procedure might not be because they think it is unethical but rather futile a totally different thing.

[YPestis]

There is no right and wrong answers with many end-of-life decisions. There is only loss and death at the end. I don't think anyone was "at fault". The doctors, ethics panels and parents were all doing what they thought was best.

I'd also point out that the doctor didn't "make" the decision for the parents. The hospital, including ethicist, specialists, care providers all discussed this case and decided the procedure was futile and unnecessary. This wasn't some standard protocol that the hospital refused on financial grounds. The hospital refused to do the procedure based on ethical grounds. I also think it's entirely appropriate for physicians to follow their conscience and refuse to do procedures which they believe to be unethical as long as the patient can seek out second opinions. In the parents' case, they had to look pretty hard to find that second opinion. It didn't appear that many medical practitioners shared the parents' initial optimism.

I did a few rotations at a pediatric hospital and saw a lot of sick babies in the NICU. It was very heartbreaking to see them suffer like that. I'm sure if it was my child, I would try my best to get them the best care, but if they were to die, I'd try to make my child comfortable. Pediatric hospice care is severely underrated as a field. Why waste resources on futile gestures which are most likely painful and unnecessary? I think it's this last part that finds the most conflict between doctors and patient families.

I had to sit through a debate between a surgeon and the family of a dying man. The man was dying, there was no question. The family was advised that they should ask the surgeon to perform a procedure to alleviate his enlarging belly. The surgeon refused. He didn't want to put the man through a painful surgery which offered few benefits and (in his view) most likely will kill him. The family insisted. Another surgeon took the case (out of friendship with the man's doc). The man died on the operating table. I felt the family didn't fully understand the medical implication of what they asked the surgeons to do.

I think the problem with these end of life decisions is that the family will continue to fight long after physicians stopped. It puts the hospital and doctors in a tough spot. Do I want to perform a painful procedure on a patient to placate the family? Shouldn't a physician's first duty be to the patient? People say that the family should make the decision for the patient. However, it's more complicated than that. The physician's duty is also to the patient. If a doctor feels they are doing a painful, risk-filled procedure only to make the family happy, then they are no longer following their oaths to do no harm.

Anyways, there's enough medical ethics issues to make most people's head spin.

[chaotic life]

In the US, well over half of all medical costs occur at the end stage of life. Canada has a vested interested in keeping medical costs under control.

However, when it comes to palliative care, there isn't such black and white/right and wrong answers. I would want my child to die at home too. And, I would probably move heaven and earth to get my child home if it was possible. A trach is NOT a big nor complicated procedure and actually got him off of assitive equipment.

My guess is that the Canadian doctors were probably FAR less concerned with whether it was compassionate or effective but the risk that it would in fact prolong his life and thus require an open-ended amount of home health care to manage his case instead of the finite termination point pulling the plug would provide.

[browngrl]

In the US, well over half of all medical costs occur at the end stage of life. Canada has a vested interested in keeping medical costs under control.

However, when it comes to palliative care, there isn't such black and white/right and wrong answers. I would want my child to die at home too. And, I would probably move heaven and earth to get my child home if it was possible. A trach is NOT a big nor complicated procedure and actually got him off of assitive equipment.

My guess is that the Canadian doctors were probably FAR less concerned with whether it was compassionate or effective but the risk that it would in fact prolong his life and thus require an open-ended amount of home health care to manage his case instead of the finite termination point pulling the plug would provide.

I am a Canadian doctor and I your statement is flat out wrong. EVERY single doctor I know tries to do the right thing. This is not always easy as many medical problems do not have a right answer. No one here knows the real story of this family - we only know the story that the family and media wants us to know. However from personal experience I will tell you that the doctors did not come to this decision easily. I have never seen a case where doctors took legal steps to stop treatment where the decision was made lightly or based on cost.

edited because "if" and "is" are not the same thing

[treemom]

I am a Canadian doctor and I your statement is flat out wrong. EVERY single doctor I know tries to do the right thing. This is not always easy as many medical problems do not have a right answer. No one here knows the real story of this family - we only know the story that the family and media wants us to know. However from personal experience I will tell you that the doctors did not come to this decision easily. I have never seen a case where doctors took legal steps to stop treatment where the decision was made lightly or based on cost.

edited because "if" and "is" are not the same thing

And I will defend parents here. As a parent who made a choice to terminate a later term pregnant because of a genetic disorder I have been active in conversations and also in actual action about parents rights during pregnant (being offered abortio. And palliative care and prenatal hospice...) but also for living infants and children.

And no parent I ever have talked to makes a descion lightly. It is an agonizing series is sleepless nights, Internet searching, tears.

I am going to assume the best of all involved because I was involved in a termination decision, that while not the same can feel the same. I believe the doctors acted in good faith and I believe the parents did so as well.

There is no right choice, they both suck.

(I typed that on my iPad, sorry for the rampant typos.)

[Vex]

Why are some people convinced the doctors wanted to cut costs?

There might be some hospitals who place money over ethics, but they went to many hospitals where dozens of doctors made the same call. Their duty of care is to the patient, not the parents. That's what the Hippocratic Oath is there for. The vast majority of doctors are extremely caring people who want more than anything to help people. You don't go though 7+ years of med school to say 'Let's deny this helpless infant a life-prolonging procedure, if we do it he might actually LIVE and cost the government millions!'.

I admire pediatric doctors and nurses who care for terminal patients so much. I considered applying for medical school, and part of the reason I didn't go forward with it was that I felt I couldn't deal with people who were dying, especially if I had to do a pediatric rotation. That's why I work with the dead.