Infant euthanasia in the Netherlands

**hadassahchana**[$] · #1 03-19-2005, 05:57 AM

Here's an article about a pediatrician in Holland who has created guidelines for euthanizing infants. The guidelines are being published in the NEJM this week.

Quote:

He and his colleagues started familiarizing prosecutors with difficult cases, even including them on daily rounds. And they developed a protocol, published this month in The New England Journal of Medicine, that is both a checklist and a how-to guide for Dutch doctors who are considering ending a baby's life and still want to stay out of jail.

Now, he is suddenly in demand as an expert in the medical and ethical issues surrounding infant euthanasia and not exactly sure what to make of all the fuss.

Is it ehtical to 'euthanize' a seriously ill infant? Euthanasia is legal for children over 12 in the Netherlands. Will such a policy ever be put into place here?

To me, it feel s like open season on people with disabilities. Of course it is easier to simply kill a severely handicapped baby - but is it right?

Cindy

cristina1 · #2 03-19-2005, 08:48 AM

It sounds so wrong on so many counts, but then again, I have never seen a child that sick and in that much pain. The baby the article described with skin that fell off everytime someone touched her - well, I couldnt imagine the amount of pain that child was in. I dont know that I would have been able to judge the parentshad they chosen this path.

**mjfrombuffalo**[$] · #3 03-19-2005, 08:56 AM

We had another discussion about this going on, but I think it was in Ye Olde Soapbox 'cause I can't find it.

Another case where our improved medical knowledge and technology has turned around to bite us in the butt. Used to be this wouldn't be a grey area because the infant would not live long anyway. But now that we know how to keep people alive through serious medical crises and conditions, lots of grey areas come up.

**hadassahchana**[$] · #4 03-19-2005, 09:52 AM

Oh, I do understand grey areas. I went into labour really early with #4, late enough that the hospital would have been required to try to save him but too early for him to have survived more than just a few pain-filled weeks. I stayed home and prayed that the contractions would stop. A month later, when the same thing happened and his chances of surviving were much greater, I hurried to the hospital. Judicious use of interventions is one of the things that we are lucky to be able to have.

However, actively killing a baby just tunrs my stomach. I've seen spina bifida babies (the four most recent that he supervised) and it would have been a hard thing to raise one, but I could have done that. I also understand the pain of watching the baby with the skin disease, but I;m not sure why the pain meds couldn't have been increased even further? I agree that is heartbreaking. I also understand the parents who flinched when they took their sick child to the hospital and Dr. Verhagen walked in. I would refuse care from him. That's me being a PITB, but that's how strongly I feel. I don't think I could trust him to do everything humanly possible to save my child if I knew that he could advocate the child;s death at any time.

Cindy

**theworm**[$] · #5 03-19-2005, 06:38 PM

I am so torn on this. A big part of my brain says no, but then I think of photos I've seen of Tay Sachs babies. They decline quickly, but not so quickly that they don't suffer horribly, and they never survive. I don't know that I could put my baby through that. I just don't know.

wivabef · #6 03-19-2005, 07:22 PM

I have a problem with euthanizing, though it is an agonizing decision.

I wanted to check out the Hallopeau-Siemens disease the doctor spoke of. So I went on the web and found this site:

She is 21 years old. Her name is Cristina. She has this disease. And if you look at her pictures (they are pretty graphic) you can see she has been through a lot. But she is 21 and she is not only alive, but managing a website.

I am sure there are some fatal diseases that are horrifying in which perhaps heroic measures should not take place. And I am no doctor. But Cristina has this disease.

From her site:

Quote:

I was born on July 4th, 1983. Being born on Independence Day, of all days has always had a special meaning in my heart. Who would ever think that a baby, born with no skin on her leg and covered with blisters could ever grow up to be an independent, strong women? Certainly not the doctors who told my mom I wouldn't live past the age of two. I have proved them wrong, and continue to do so as I never give up my quest to be independent. But it's taken a lot of tears and bumps in the road to get here and every day is a struggle. However, I've grown up with a loving, supportive family and I'm ready to become the independent women that seemed so impossible to achieve that July afternoon.

I am sure alot of people with EB are glad her mother didn't find this doctor.

cristina1 · #7 03-19-2005, 10:26 PM

Thanks for posting that link, Elyzabeth. I like the way Cristina described people with the condition - Butterfly children. She is lucky to be alive - and lucky to have strong parents.

I remember reading an article about a parent of a severly disabled child. I forget now what the child's diagnosis was, but the parent described it this way (and I am paraphrasing)

"It's like having a plane ticket in hand for Florida. Everyone is going to Florida and you can't wit to get there yourself. And you step on the plane and it takes off, but lands in California instead. California isnt the destination you thought you were getting, but it is beautiful and fun regardless, just in a different way than Florida is."

I read that article before I ever had children, but it always did stick with me. I prayed that if my plane landed in California instead of Florida I would be able to have as wonderful an attitude. I guess I'll never know the answer to that question. I'd like to think so, but I still can't judge a parent that doesnt.

Just a quick question - how do you all feel about aborting a baby when tests show "abnormalcies"? (Please let us not get into the standard abortion debate over that question.) I relize that abortion and euthanization are clearly not the same, but Cindy's comment about this being open season on the severely handicapped made me make the connection.

*emeleel* · #8 03-19-2005, 11:20 PM

Quote:

cristina1 said

Just a quick question - how do you all feel about aborting a baby when tests show "abnormalcies"? (Please let us not get into the standard abortion debate over that question.) I relize that abortion and euthanization are clearly not the same, but Cindy's comment about this being open season on the severely handicapped made me make the connection.

Well, I think you do have to tie the "standard" debate in, at least to some degree. Whether or not you believe life starts at conception, or first heartbeat, or whatever point, is going to color your feelings about the issue.

Since I do believe that life begins at conception, I don't believe it's up to man to take that life. Now, for a child with severe abnormalities, I would probably tell the doctors not to use heroic measures and just let nature take its course in whatever direction it goes. There are just too many "what if's" for me to feel that I should make that life or death decision. There are many children who quietly go on their own, and many who live for a time or even a long time, as the girl above, and are a tremendous blessing to their families and those who know them. Who are we to just take that away?

**hadassahchana**[$] · #9 03-20-2005, 12:11 AM

Me again (don't I always have an opinion on everything?

)

My baby, #4, had a severely enlarged kidney, discovered on an ultrasound one week before he was born. It was a huge shock- we were told that our doctor suspected a Wilm's tumor (apparently always fatal) and he put us in touch with a doctor in a larger city for a second opinion. While we were discussing this, the doctor mentioned that it was a real shame we hadn't discovered this defect between 5 and 6 months, because then we could have had an elective termination of the pregnancy. I have always been grateful that that man was a good two hours away and I was too tired and pregnant to drive that far, I just longed to give him a good hard smack up along side the head. Two days after his birth, we discovered that in fact he did not have a Wilm's tumor. It was something else entirely, and correctable by surgery.

Btw, my baby turned 8 this week, His kidney, monitored twice yearly for many years, for some reason became a normal functioning kidney the summer he turned 6. It just about breaks my heart to think how many babies might be aborted or killed after birth based on a misdiagnosis such as ours.

Cindy

**jgibson2**[$] · #10 03-20-2005, 03:07 AM

Cindy,
Wilm's tumor is treatable . It truly would be a shame to terminate a pregnancy for a treatable condition. There are syndromes which predispose to Wilm's and include mental retardation - that would be enough to get some docs to suggest pregnancy termination.

Back to the topic at hand. This is one which is very emotionally draining for me. Most of you know I'm a NICU nurse. I work in a Catholic hospital, so active euthanasia is not really a concern, although it is occasionally a topic of discussion when there aren't any parents or other "outsiders" around. Withdrawing the high-tech life support is something that occasionally happens.

We try to save lives, but sometimes we also take care of dying babies. Some have congenital syndromes not considered compatible with life. Others are too small or immature, or have developed some serious illness. I'm always really glad I'm not the one who has to make the ultimate decision. It can't be easy.

Last year, we had 2 babies for whom we called the hospital chaplain the same night. The man was wonderful with the parents, but he was in tears by the time he left. I think we all cried that night. The babies were so sick that none of us thought there was any hope for them. We didn't see much point to what we were doing and felt that we were torturing them unnecessarily.

They're both healthy today. They may have some long-term problems as a result of their illnesses, but right now they're doing very well.

I'm so glad that Elyzabeth posted the web site about EB. I've only heard about the bad side of that particular syndrome, and we've been lucky enough not to see it in our NICU yet.

**hadassahchana**[$] · #11 03-20-2005, 12:00 PM

Judy, thanks for that link - I am just stunned! I was told by a couiple of different docs that Wilm's is always fatal, and that termination is always recommended. This, of course, was about 8 years ago, not sure if things have changed since then.

And thank you for the story about those babies. I really do understand that watching a baby in pain would be agonizing. It just seemed to me that the doctor in that article seems wayt too much in favour of simply ending a child's life so quickly. That makes me sad.

Cindy

realtraveller · #12 03-20-2005, 12:41 PM

Within the last few days there was a story out of Great Britain in which a late-term abortion was performed because the baby was diagnosed with a cleft palate. Obviously a very treatable condition with surgery.

There is a slippery slope between aborting late-term or euthanizing a baby with a totally untreatable, incurable, painful and terminal condition and one with a mere cosmetic deformity. But some people who want only 'perfect' babies are apparently willing to kill the imperfect.

**drmomentum**[$] · #13 03-20-2005, 01:00 PM

That slope sure is slippery. Next we'll be aborting ugly 40-year-olds.

**jgibson2**[$] · #14 03-20-2005, 01:07 PM

Quote:

drmomentum said

That slope sure is slippery. Next we'll be aborting ugly 40-year-olds.

Not the ugly ones, just the burdensome ones. One of my co-workers was very nearly apoplectic last night when I declined to agree with her about the need to do that very thing. Some times she scares me.

realtraveller · #15 03-20-2005, 01:23 PM

There is a certain dissonance in our laws over abortion, euthanasia and right to die issues. And there is little logic in that dissonance.

Christian Scientists or cult members who deny medical treatment to their children are prosecuted under child endangerment laws. But if those children are severely disabled and in the hospital, denial of treatment is done routinely.

One can abort a child in the eighth month of pregnancy but once the same viable child is born, killing it is murder.

Starve an Alzheimer's patient at home and be prosecuted for elder abuse. Starve a person in a hospice and it's okay.

Assisted suicide is okay when a doctor does it in Oregon, but is not okay if done at home with a gun.

**theworm**[$] · #16 03-20-2005, 01:52 PM

This is one of those issues that I hate thinking about and I hope I'm never in a possition to HAVE to think about it. I'd have to work hard to get pregnant, so the thought of choosing to abort is hard for me to imagine, but, as I said above, I would not want to bring a child into the world whose life was one of great suffering. A cleft palate can be fixed. A deformity can be lived with - but something like Tay Sachs - if I knew that I was having a Tay Sachs baby I would abort in a second.
Many people who have amnios decide that they will abort for Down's Syndrome. I don't think that I would, but if a person looks in their heart and says that they're not prepared to deal with those challenges, is it better for them to abort than to bring a child that they won't care for well into the world (and yes, adoption is an option). Euthanizing a baby is something I just can't really think about, but given my views on abortion, etc, I don't know that I can say without a doubt that I'm totallyl against it in very very very limited cases. I'm just not comfortable with how those decisions would be determined. I'm so upset about the Terry Shiavo case, so these issues are on my mind, and its really painful to think about!