What rights do parents have regarding emergency medical care of a newborn?

March 10, 2009 3:21 PM

What rights do parents have to stop resuscitation and other medical intervention in an extremely premature or gravely compromised newborn?

My wife and I recently learned we are expecting twins. We have already lost two pregnancies, one to a severe fetal defect. We are more conscious than most parents-to-be about what can go wrong, and twins carry their own complications. My wife is a health care professional in an emergency room and she deals daily with the possible negative long-term consequences of aggressive neonatal intervention. It may shock some, but we both believe that in some cases it is better to let a baby die peacefully.

All of this had led us to wonder what rights we have, if any, to limit care to a newborn arriving with a profound life-threatening defect or condition. Our nightmare is to have babies who would be in our opinion better allowed to die whisked away and given heroic treatment that would prolong their suffering. I can easily imagine the tremendous pressure in a delivery room to do whatever is necessary to save a baby, and we fear being steamrolled by that momentum.

It appears the topic of neonatal do-not-resuscitate orders is almost taboo (a google search of “neonatal DNR” returns just three results) but such orders are possible. Complicating further is the so-called “Baby Doe” law of 1982 that requires hospitals to provide certain types of care to newborns regardless of parental desires, and defines the failure to do so as abuse/neglect.

The actual question is what can we say no to, and under what circumstances? How premature (in this time of expanding viability) is premature enough to say “no, too early!”

We will definitely be talking to our OB about this, but I would dearly appreciate the input of the hivemind. Thanks in advance for discussing law, rights and practice instead of morality. This is a really tough thing for us. We're in Minnesota, USA if state law matters.

posted by werkzeuger to law & government (18 answers total)

OK on practice: Here in the UK the majority of OBs and Paeds people we know would see this exactly as you are describing it and would be incredibly empathetic and receptive. (My husband is still actively involved as an Anaesthetist in the Delivery room on an almost daily basis, I'm not).

So, acknowledging the different legal code that applies in the USA, you should, we believe be completely understood in how you have expressed yourself here. Obviously you should know if your OB has any reservations ethically, and it would be completely justified to change your OB should that be the case to protect both parties.

I'm aware that OB/GYNs in the USA are really under pressure to practice defensively so your OB may need things drawn up in a legal/written fashion according to the laws of your State.

There really can't be any hard and fast rules about weeks of maturity. Some X week olds breath spontanously other X+2 week olds don't. So that very much is the field of the Paediatrician. You'll have a better idea the closer to your date of induction you get.

I hope more USA based mefites can give better and more specific advice. I simply want to express my admiration for how you've framed this issue and how hard it must be to consider this in light of your losses. I wish you two healthy and happy additions to your families.
posted by Wilder at 3:39 PM on March 10, 2009

all those plurals, I need to get to bed!, sorry, family, I mean.
posted by Wilder at 3:42 PM on March 10, 2009

werkzeuger, please check your MefiMail... one of my family members experienced precisely this scenario.
posted by scody at 4:25 PM on March 10, 2009

Before 28 weeks gestation, i remember the decision was 100% up to us (this was 9 years ago). I think it changes somewhere around "age of viabiltiy" and of course with modern advances this might not be 28 weeks anymore.
posted by agentwills at 4:28 PM on March 10, 2009

I'm really sorry to hear your circumstances. I gave birth to a 32-weeker who spent about 4 weeks in the NICU. I can honestly say I do not recall any DNR orders posted on the Isolettes or cribs; however we were just a level 3 NICU so it may be different in level 4 facilities where they take more serious cases.
Rather than talking with your OB, can you schedule an appointment with the maternal-fetal specialist and/or the neonatologist at the hospital where she will deliver? These folks would do this when she's admitted for delivery, anyway, so it's not a bad idea to get both of you involved at this point, just so everyone's clear.
I found the nurses who post at allnurses.com's neonatal forum to be very informative. I would point you over there; they are the nurses who practice in the NICU each day and can give you a very clear answer. My feeling is it depends on what the family wants, just like any other medical situation. And of course, if your wife's life is in danger in any way from the pregnancy or delivery, the clinicians will preserve your wife's life over the baby's. That's what happened to me, at least.
posted by FergieBelle at 4:32 PM on March 10, 2009

Talk to a lawyer familiar with the laws in your state. Absolutely do not rely on advice or anecdotes from anyone on the internet or any medical personnel.
posted by iknowizbirfmark at 4:43 PM on March 10, 2009 [4 favorites]

This is an extremely tricky issue, and it is completely dependent in which state you reside.

I've litigated this from both sides, the parents and the healthcare providers; for treatment and against it. I've drafted policies for hospitals on this point. I'm currently litigating a case involving intractable anoxic ischemic encephalopathy which is profound traumatic brain injury (basically, a fetus was delivered with 0 Apgar scores across the board for the first 15 minutes and was brought to life by the physician; the basal ganglia was destroyed). I know how bad this can get because I've seen the worst.

If this were Texas, I'd ask you to contact me privately, because I could give you some extremely useful direction or possibly assist you directly. Sorry I am not that familiar with Minnesota.

I will do this, though: I'll take a look at the Minnesota statutes and see if I can figure out which one applies, if any, and direct you to the relevant one. It may not be until tomorrow, though.
posted by dios at 5:13 PM on March 10, 2009 [6 favorites]

Just to make clear: you'll probably still want to talk to a health lawyer in Minnesota.
posted by dios at 5:14 PM on March 10, 2009

Agreeing with the need to talk with the appropriate medical and legal specialists but willing to ramble anyway: You can plan scenarios out with your OB all you want but, in my experience, your neonatogist or pediatrician is really who you need to speak with. At most high risk centers, a neonatogist is usually called within X amount of time after delivery. And once the neo is involved as the infant's doctor, any plan with the OB who is the woman's doctor may no longer be in place- esp if the neo wasn't involved in the plan's formation.
posted by beaning at 5:23 PM on March 10, 2009

In just a few hours there have been so many thoughtful and caring responses. My wife and I are touched and very appreciative.

I will do this, though: I'll take a look at the Minnesota statutes and see if I can figure out which one applies, if any, and direct you to the relevant one. It may not be until tomorrow, though.

Thanks dios.
posted by werkzeuger at 5:52 PM on March 10, 2009

Yes, the best bet is get a legal opinion from someone from your area.

Since I can't do that, I will just send along my best wishes and hopes.
posted by never used baby shoes at 6:13 PM on March 10, 2009

If you know which hospital you will be at, they should have someone to talk to about some of these issues. Hospital ethics committee, patient advocate, etc.
posted by i_am_a_Jedi at 7:05 PM on March 10, 2009

Werkzeuger, I am so sorry you are going through this, and I wish you and your family all the best.

While you need to speak your specific health care providers and a lawyer in your state, I can offer you some concrete advice: you will need to avoid a Catholic hospital. They are much more likely to treat aggressively regardless of the family's wishes.

In general, this area or law is incredibly state-specific and is also a new and expanding area of law. South Carolina is trying to pass a law right now that would require doctors to provide all care available to any fetus born alive (they define born alive as any response or movement) at any stage of development. I am pretty sure Minnesota does not have such restrictive policy, as far as I know, but I am definitely not a legal expert. You could contact an organization such as the Center for Reproductive Rights, or the National Advocates for Pregnant Women, who may be able to help or suggest a MN lawyer who is an expert in this topic.

You may also wish to discuss with your OB extensive prenatal testing and monitoring, and base some of your decisions on the results of these tests.
posted by min at 8:04 PM on March 10, 2009

When I worked in a hospital, the staff in the NICU were some of the most amaziing people I met. Go visit and ask them.
posted by theora55 at 2:45 PM on March 11, 2009

In grad school for bioethics, I spent a semester following the hospital ethicist. It has been my experience, that every hospital has one. They are usually philosophy trained, but often have extensive legal training as well, because they are often the ones who advise the medical professionals on appropriate response to certain events.

If there is a bioethicist at the facility where you will be delivering, then I would recommend setting an appointment to talk to her/him. Not only can they provide some interesting insights, but they can tell you what the hospital policy is, which is some private hospitals can trump your written instructions, and they are willing to fight it out in court later.

My heart goes out to both of you, and I hope that you find yourselves the exhausted parents of happy, healthy twins.
posted by dejah420 at 11:50 AM on March 12, 2009 [1 favorite]

I can't speak to the legal side of things, but the children's hospital where I work has a level III-C NICU which is the most advanced (does ECMO and open heart surgery in addition to all the other criteria) and this sort of thing comes up all the time. You asked how early is too early; the risk goes up substantially before 28 weeks (and is non-trivial even then). I have seen 23 and 24 week preemies do well, but a lot of them have serious problems and of course some do not survive. Here is a study looking at long term outcomes of 1036 infants born between 23 and 26 weeks gestation for more info. (I am at work where we have institutional access; I do not know if the full text is available for non-subscribers but you should at least be able to see the abstract). To get to the meat of your question, the subject you are looking for is neonatal palliative care; googling it will get you some good results. You might want to look at this site; while it is mainly concerned about palliative care for older children, there is some information on newborns. Finally, this article was written by one of the neonatologists I work with and gives a review of the current thinking on this subject. Once again I am not sure you will be able to get the whole thing; if not MeMail me and I can send it to you via email. I agree with those above who suggest talking with the neonatologists at the hospital you plan to deliver at (or the NICU they would refer you to if needed) ahead of times to get their take on things.

I can only imagine how worrisome this is to you given your history, and I sincerely hope things go well. FWIW Minnesota is the birthplace of congenital heart surgery and there are some world-class medical facilities there.
posted by TedW at 1:31 PM on March 12, 2009 [2 favorites]

Addendum: now that I am home, I see the first journal article I linked is available without subscription, but the first is not and my link just gives you subscription options. Here is a link to the abstract; if it looks like something you would find useful my offer to email you the entire article still stands.
posted by TedW at 7:22 PM on March 12, 2009

I don't know if this will be at all helpful because it is purely anecdotal, however I lived through the very thing you fear the most.

After a very prolonged labor, my son went into distress when my OB was not in the hospital to deliver him. In the time it took for another doctor to prep me and do an emergency casarean, he had been without oxygen for too long and was born dead. Unfortunately, they revived him and whisked him away without my ever having seen him. Three hours later I was allowed into the neo-natal intensive care where he was hooked-up to several machines. The next day I was told that he had no measurable brain function, however they could not just turn off the machines keeping him alive; a panel would have to convene to discuss his case and that would take about a week. An hour later I was told he was dead. Did someone, a nurse perhaps, mercifully intervene? I don't know. I do know the hospital expected to be sued. I never took any legal action, but I was informed a year later that my OB lost his right to practice in that hospital because he put me on a Pitocin drip and then left the building.

I don't see how the hospital could have done anything different. I agree with you that sometimes we go too far in medicine and keep people, babies, alive when it would be more merciful to let them go. I was lucky, My life would have been unimaginably worse if my son had had some brain activity-- not enough to develop into a fully functioning human being but too much to turn the machines off. Yet how could any delivery team make the decision on the spot as to whether or not to revive a newborn? The only way to prevent modern medicine from using everything in its powers to keep your baby alive is to deliver at home.
posted by Secret Life of Gravy at 7:24 PM on March 12, 2009 [7 favorites]