[Mamabeakley]

I am getting around to making an Advanced Directive and will. No, there's nothing wrong with me - it's just a prudent thing for anybody to do!

So in my state, the forms allow women to specify different options about life support, tube feeding/hydration, pain medication, etc. if they are pregnant at the time such decisions are being made.

I know what my preferences are regarding these decisions. I would want my life and therefore the pregnancy to be maintained long enough for the baby to be born and survive without invasive life-support (IV nutrition, ventilator, etc.) - if possible. I would NOT want the baby "taken" before that point, even if it meant the baby dying with me.

But I don't have the technical knowledge to say reasonably when that point is likely to be. Can anyone help me out with some reliable source information about this? I know technology is advancing all the time - but I want to know when most babies are reliably able to survive WITHOUT (much) technological intervention.

Note: I know that many of you might have different preferences about this subject, and I absolutely respect your right to make your own decisions. I don't want to debate what the right decision is, because I think each of us must find the decision that's right for her and her family.

TIA!

 

[OnTheFence]

Mine is 28 weeks gestation, however medically here they try to save at 24 weeks gestation. Back in Feb. here though, they tried to save a 23 weeker that weighed 10oz.

 

[etoilech]

Having spent far too much time in the NICU, I wouldn't attempt "heroic measures" on a baby less than 26 weeks. That's just my opinion though. Good luck with your paperwork. I hate thinking about stuff like that.

Olivia

 

[Mamabeakley]

Yeah, me too. But I know I should. I've spent only a little time in a NICU, visiting twins born to a church member's family at a little under 26 weeks, and while I respected that family's decision to keep their babies alive, I'm not sure that I would have chosen the same course. I think I might have chosen to let them go.

Sigh. Not a happy thing to think about. But I'd rather have given it some thought before I am ever in the situation than end up there with no idea what MY values and preferences are.

Still looking for studies, research, position papers, etc . . . anybody?

 

[Henry's_Mamma]

I don't have any research (sorry), but in all honesty, I think it depends largely on the preemie, almost more so than the gestational age.

I have a friend who just had a baby at 26 weeks (last week of 2nd trimester). He was big for gestational age -- over 3 lbs. He responded well to admnistration of surficant (the stuff that coats the lungs so they can take breaths w/o use of a ventilator) and w/in 2 days of birth, he was breathing room air and oxygenating well. (Note: if there is time, drs. try madly to give mom steroids and surficant pre-birth to make the baby ready to breath at birth, thereby eliminating the need for a ventilator). Within about a week of birth, he was taking colustrum (via tube -- no gag reflex until about 34 weeks). He has had typical preemie ups and downs (some intestinatl issues and apnea episodes), but is doing remarkably well.

I also know someone who had a 29 weeker (same hospital) who did not fair so well and for whom they eventually decided to remove support. Never quite got breathing down and had severe apnea episodes, on and off ventilator, etc.

There is also some statistical evidence that suggests that premature female infants do better than male ones.

Personally, I would be comfortable around the 26-28 week mark, if baby was heavy for gestational age and administration of the appropriate drugs could be performed prior to birth. Otherwise, I'd be more comfortable around the 28-30 week mark.

You should know that there is a federal law provision that mandates that drs. do everything they can to save a potentially viable baby. Not all hospitals follow this rule to the letter, but typically, parents don't really have a say. I'll try to find a link.

 

[Mamabeakley]

Is this what you're thinking of?

http://www.pediatricservices.com/prof/prof-01.htm

"By 1984, the Child Abuse Prevention and Treatment Act had ordained that aggressive treatment of premature infants must be given, regardless of the prospects of future disability or the wishes of parents. The only exceptions: unless the provision of such treatment would be virtually futile in terms of the survival of the infant, (and) inhumane."

So it sounds to me like there would be a legal argument for the parents to have the right to decide what would be inhumane . . .

Anyway, whatever might actually happen in such a situation, I think I have a moral responsibility to state what my own moral beliefs/decisions would be. . .

Here's the wording I came up with:

Before x weeks (GA? LMP?), in any circumstance listed in items 1, 2 or 3, I direct that my spouse, or if he is not able to do so, my other health care agent, has the right to decide whether my life should be extended by life-sustaining measures, including the administration of nutrition and hydration artificially; whether to administer medication to alleviate pain and suffering; and whether I should be given all available medical treatment in accordance with accepted health care standards until the pregnancy reaches x weeks (GA? LMP?). If he (or she) decides not to sustain my life, or if it is impossible to sustain my life until x weeks (GA? LMP?), I direct that no life-sustaining measures, including the administration of nutrition and hydration artificially, be given to my baby, but that it be allowed to die with me. At such time as the pregnancy/baby reaches x weeks (GA? LMP?) I direct that the baby be born and placed in the care of his or her family as directed in my will. After the birth of the baby, my decisions herein stated for times when I am not pregnant are again valid.

After x weeks (GA? LMP?), in any circumstance listed in items 1, 2 or 3, I direct that my life not be extended by life-sustaining measures, except that if I am unable to take food and water by mouth, I wish to receive nutrition and hydration artificially until the birth of the baby. If other life-sustaining measures would be required, I direct that the baby be born and placed in the care of his or her family as directed in my will. After the birth of the baby, my decisions herein stated for times when I am not pregnant are again valid.

Still have to write the will - more fun stuff to think about.

 

[orangebird]

They will reciusitate 22 weekers around here. I wouldn't want my own baby rescitated until 28 weeks (depending, if it came out screaming and trying to live it would be different, but I don't want to push a floppy unresponsive 25 weeker, I just don't have it in me, I work doing this and sometimes feel like I am fighting a kid who just wants to die) but I don't know that I would be allowed to make that decision. It seems like they only let parents here decide if it's under 24 weeks. That said, a 22 weeker can do remarkably well ( I have seen some amazing babies) and a term kid can be sick as a dog. Or if we are talking premature, a 30 weeker, who usually they do great, can be very sick, have bad respiratory problems, sepsis, you never know. It is a tough decision. Especially when you are trying to decide the hypothetical and aren't going to actually be there to see the specific circumstances and make decisions as they come up. Gosh, good for you for making a will and advanced directive. It's so important and I know I'll never get around to it.

 

[doctorjen]

Hard to say what is best to do in this situation, or when it's "safe" to assume baby is likely to do well. When I was in med school, one of the neonatologists who was also an ethicist where I worked did a study that showed that after 72 hours of NICU care, the eventual outcome for the baby could be predicted accurately a high percentage of the time. If baby did well and could be stabilized initially for the first couple days, often they continued to do well, and if they couldn't, you could often predict severe disability then. He advocated that every baby over the age of viability be given 72 hours, and then a reassessment with honest information used to make more decisions. However, I know in real life parents often find it impossible to stop when baby is still living and there is a "chance."
Most babies over 30 weeks do well, with very little long term problems. Many babies over 28 weeks do well.

Some general advice on advance directives (I did a fellowship in medical ethics between medical school and residency.) In most states, the safest advance directive to write is a durable power of attorney for health care, naming someone you trust to make your decisions for you. This gives someone you trust the power to act as if they are you, so they have the power to do anything you have the power to do. You want to be careful what you put in writing in a formal document. You don't want to limit your power of attorney's (POA) power if at all possible. It is very, very hard to predict every possible situation you might find yourself in, and you don't want to commit your POA to do something they may feel later you wouldn't want. A good way to handle this is to write out in detail your preferences, and give them to your POA (and any backup POAs.) Then leave your durable power of attorney for healthcare fairly general (just giving you POA power to make decisions when you are unable.) The letter you've written serves to give your POA an idea of how to proceed when they have to act as you. If they have trouble with the medical staff not believing they are acting in your interest, they can produce the letter to show evidence of your stated beliefs, if they don't have any problem, they can just use the letter to help them know what you want.
The problem with putting down in a formal document very specific wishes is that doctors treating you may decide those specific wishes hold trump over what your POA wants to do. You want to leave your POA the ability to make decisions that they think are in your best interests, and then you want to make sure your POA understands what you want.
Does that make sense?

 

[orangebird]

The POA idea is a great one, IMO. It seems much better that someone is there to judge the actual situation, there are so many variables to make such a blanket judgement ahead of time.

 

[Mamabeakley]

Yeah, the form my state provides is actually pretty general, I think. On it I name someone and a back-up someone to make decisions for me, and then I have the option to specify what treatment I do/do not want. Because I am very sure I do not want to be on life-support in a terminal or non-recoverable state, and that I wouldn't even want artificial nutrition or hydration, I'm stating that. But I'm not making any directives about specific treatments, short of that terminal state.

What I'm doing in the section about being pregnant is taking even those limits off of my decision maker until the baby can be born. Basically saying that person has complete discretion about what to do with me to make it possible for the baby to get to viability as I define it (whenever I figure that out.)

ETA: Does "30 weekers usually do great" refer to 30 weeks GA or 30 weeks LMP?

 

[Mamabeakley]

Okay, I finally found search terms that gave me some data (survival premature).

Here is a table I found helpful:

http://www.geocities.com/Heartland/A...077/table.html

 

[Twisti]

Quote:

Originally Posted by Mamabeakley Okay, I finally found search terms that gave me some data (survival premature). Here is a table I found helpful: http://www.geocities.com/Heartland/A...077/table.html

I found that very interesting...

 

[doctorjen]

I mean weeks from LMP. And I said "Most babies over 30 weeks do well" not "usually do great." By usually do well, I mean they usually recover from their early birth with no long term disabilities. They do, however, still face weeks of special care.

As long as you trust your POA to make decisions, I would put as few things down formally as possible. It's just too hard to know every possible situation. Also, even things that seem obvious to you when you're well may be interpreted differently by a physician when you are not. "Terminal" and "non-recoverable" aren't as easily defined as you might think. Some living wills have actually made it harder for family members to discontinue or withhold treatment, because the medical staff didn't feel the conditions of the living will were met - as in they thought there was reasonable hope for recovery, even though the family thought the benefits were outweighed by the burdens. I still feel you are safer to make a private letter, but leave your durable power of attorney for healthcare document wide open, or perhaps with just a general statement such as "I believe that I would want to have medical treatment only if there was a reasonable chance of meaningful recovery. I do not what my life to be prolonged if my agent feels that the benefits of further treatment are outweighed by the burdens of such treatment." Such a statement gives evidence of your general philosophy, but doesn't have any binding specifics.

 

[Mamabeakley]

Jen, thanks so much for your insights into this. They're really helpful to me. (BTW, a pp said "do great".)

I am liking the idea of leaving private instructions rather than public ones. There are things I'd like to say, like, "please consult with other family members before making any final decisons" that I can tell would be REALLY unwise to put in writing. I'm kinda laughing at my desire to make this a committee decision! :LOL

Thanks again!

 

[kofduke]

Thought this was an interesting article for those following this thread:

http://news.yahoo.com/s/usatoday/200...esofsavingbaby

 

[Moon Faerie]

I honestly don't know what my comfort level would be. My cousin's daughter was born at 24 weeks. She did have a rough start. She's 5 now, and her only complication is a lazy eye that she wears glasses to correct. Knowing that, I'd probably lean more towards the earlier end of viability. They did have a section on their website about what they dealt with, but it doesn't appear to be there anymore.

 

[liberal_chick]

Hi. I usually don't post much here, but I'd like to reply to this. My water broke at 20 weeks and I was hospitalized until 30 weeks when I had a c-section.

My 30 weeker (now 3 weeks old) is doing very well. However, he did have to be on a vent for several days, had problems with jaundice, and had to have surgery b/c his feeding tube punctured his stomach.

I would lean toward prolonging the pregnancy until around the 30 week point, just judging from my experience and observing the micro-preemies my ds was surrounded by at one point. 32 weeks is a great, solid gestational age for a preemie.

Mandy

 

[because]

Check your state laws.

I believe that some states do not allow a pregnant woman to choose (in a POA or living will or whatever) to refuse life support.