When "do no harm" meets parental denial

allnurses Guide · Jan 6, 2005

Do you have an ethics committee?

Some kind of system needs to be set up but then the guidelines of prematurity are so moveable. I read a story recently about a 24 weeker who lived with no physical repercussions - one of those stories that gives hope to everyone.

I'm sorry you are going through this - very tough because you have to be the one giving care you deem futile.

I'll be remembering your little patient in prayer .. and you.

steph

rainbows4me · Jan 6, 2005

I know what you are talking about and how you are feeling. I recently had an experience caring for a baby who had been born with fused eyes, less than 500 grams, supposedly 24 weeks. She finally passed away recently, after having been put through over a month of overwhelmingly invasive care. Her parents, like this mother, were in denial. Sometimes I think that a lack of communication with our docs makes the situation worse... there is so much rotation of docs that no one person ever seems to really take responsibility and be the one to sit down and have the big conversation. Family meetings aren't frequent if the family doesn't want to hear bad news - this family certainly didn't. This baby was coded (multiple meds, lots of compressions) many times, and the parents just continued to want it all. Our nursing staff had a really hard time with this case and there actually was an ethics committee meeting... with limited effects.

I usually have an easy time separating from my work, knowing that I leave my babies in good hands - but this baby got to me. I had several teary moments wondering what was happening at work. I was most relieved recently to come in and find out that this baby had finally passed on. Sad, it may seem to some, to wish for such a thing, but when you're the one watching all of the invasive care and the pain... and to know that the eventual outcome is death, you do wish for peace for the little ones sometimes.

breastfeedingRN · Jan 6, 2005

Don't have any advice to offer. Just wanted to send cyber-hugs to all you NICU nurses.

lmcnabbkv · Jan 6, 2005

i though this article from the AP fit well here...the worst thing a doc can do is give the parents a sense of false hope, as we now know, we do our best but there are rarely miracle babies...

Study Followed Premature Babies

Half of Infants Born 'Extremely Premature' Have Developmental Problems

By STEPHANIE NANO, AP

(Jan. 5) -- Tiny "miracle babies" make for heartwarming stories, but the reality is that nearly half of all infants born extremely premature have significant learning and physical disabilities by the time they reach school age, the largest such study found.

Medical advances have allowed doctors to save earlier and smaller babies. While some developmental problems are known to be common among such children, the long-term consequences were not entirely clear.

"We needed to have some idea of really what this group was like when they grew up," said one of the researchers, Dr. Neil Marlow, a neonatologist at the University of Nottingham in England.

Guidelines call for not resuscitating the most severely premature babies, but where to draw the line is a controversial and emotional decision. The study's findings may help guide doctors and parents about whether it is wise to use heroic measures.

"Parents need to go into this situation with their eyes wide open and with an open dialogue with their doctors as to what they should do," Marlow said.

Normal pregnancy is 37 to 42 weeks. Marlow and his colleagues looked at 241 children about 6 years old who had been born between 22 and 25 weeks. They found that 46 percent had severe or moderate disabilities such as cerebral palsy, vision or hearing loss and learning problems; 34 percent were mildly disabled; and 20 percent had no disabilities. Twelve percent had disabling cerebral palsy.

"This gives for the first time a real picture of what happens to these children who are at the limits of viability," said another researcher, Dieter Wolke of the University of Bristol in England.

Their findings are reported in Thursday's New England Journal of Medicine.

The rate of premature births in the United States has crept up in recent years, in part because of a rise in multiple births and older mothers.

"It's important to realize that prematurity is a major public health problem. One in eight babies are born prematurely," said Dr. Scott Berns of the March of Dimes.

The British researchers tracked all extremely premature births in Britain and Ireland over a 10-month period in 1995. Of those who were born live, only a quarter survived and eventually went home from the hospital - 1 percent of those born at 22 weeks; 11 percent at 23 weeks; 26 percent at 24 weeks; and 44 percent at 25 weeks.

The survivors were tested at 2 1/2 years, and about a quarter had severe disabilities. They were evaluated again at about 6 years.

Standard intelligence tests showed 21 percent of them had moderate or severe learning disabilities. That figure rose to 41 percent when compared to the test scores of a group of similar classmates who were born at full-term.

In an accompanying editorial, Drs. Betty Vohr of Women and Infants Hospital in Providence, R.I., and Marilee Allen of Johns Hopkins Hospital in Baltimore, said the study shows the limits of what medicine can do to help such babies.

They cited publicity about "miracle babies" as one reason parents might seek to have their very premature child resuscitated. Last month, a Chicago hospital said a premature infant born at 8.6 ounces is believed to be the smallest baby to survive.

"We wish they all were little miracle babies, but they're not," Vohr said in an interview.

Jamie Anderson of Logan, Utah, had to make a quick decision right before her twins were born at 23 weeks in 1997. She decided to have them resuscitated, although she knew the chances of survival were low and there was a risk of disabilities.

Her son, born at 1 pound, 2 ounces, died within hours. Her daughter, Navy, who was 1 pound, 6 ounces, endured four months of operations and blood transfusions before going home from the hospital.

"We were fortunate to have one survive, but we know what it's like to lose one," said Anderson, who will be sharing her experience as a March of Dimes ambassador this year.

As for her now 7-year-old daughter, Anderson said she is doing great with no complications and recently passed two milestones: learning to read and ride a two-wheel bike.

fergus51 · Jan 7, 2005

You know a baby with grade 4 bleeds is going to have problems. There are some "miracle" premies out there, but this obviously isn't one of them. That's why I hate seeing those premie stories on Oprah and in People Magazine. They just feed parents who are in denial, and I agree with you that it's selfish at this point to continue to torture that child. Unfortunately, other than discussing it with the ethics commitee and making sure mom is getting the truth consistently, there isn't much that you can do. I have actually refused to participate in caring for a child like this once. I just could not reconcile it with my beliefs.

elkpark · Jan 7, 2005

Does your hospital have a psychiatric consultation-liaison service that could be working with this mom to help her come to grips with this situation? Or the chaplain's service or social work department? I also agree strongly that an ethics committee consultation is in order. The hospital's legal counsel may also be able to offer guidance about what treatment the hospital is and is not obligated to provide.

I worked in the psych consultation-liaison service in a large urban teching hospital for a few years, and all the members of the team agreed that the referrals we dreaded most were those from the OB service -- those were always the "messiest," difficult, most emotionally wrenching cases.

Best wishes for your difficult and painful situation ...

LilPeanut, MSN, RN, NP · Jan 7, 2005

I've dealt with this just in different pg/mom support type groups. I agree that the 'miracle baby' stories have the potential to be incredibly damaging.

It minimizes the struggles and difficulties facing the micro-preemies and while of course life is still worth living and having, even for the disabled, I too have to wonder if people realize what all is facing their child. It's hard, because somehow it feels like I am saying that retarded or disabled children have a life not worth living, but it's just so complex. Children are born with congenital problems that cause severe retardation and/or physical disabilities, but no one questions whether they should be alive usually. I think for me the line is just the amount of intervention with little to no hope of recovery and the likelihood of the child feeling lots of pain. Much like at the end of life as well.

The other problem with miracle stories, is that it makes pg women complacent or even eager about preterm infants. While it is true 28 weekers usually survive now, that doesn't mean we should be laisez faire about the possibility of a 28w, and will even encourage labor at 32+ weeks. It drives me absolutely batty.

That was a lot of rambling, thanks for putting up with it.

talaxandra · Jan 7, 2005

I just want to say that I feel for you in this difficult and awful situation.

rn/writer, RN · Jan 7, 2005

Take a look at Jeff Lyon's book, "Playing God in the Nursery." It's from mid-eighties but the questions are still the same. I got so much out of reading this book.

Also, by accident, I ran across a movie called, "Baby Girl Scott." Although it takes the opposite tack from your situation (doc won't let go when parents want to), it brings up the idea that "saving" micropremies is hardly painless.

That's the thing that this mom may not be grasping--that her baby (assuming the Grade 4 IVH has left any cognition behind) is probably suffering greatly and may continue to suffer as long as it lives. Has anyone made it clear to mom that these extraordinary measures cost the baby a lot? As a nurse, are you even allowed to bring that up?

Jeff Lyon's premise is that with some of these scary-small and defective infants, "playing God" might not be taking tham off the vent but rather putting them on it in the first place.

I have one grandson with spina bifida and another with CP. The two of them give us great joy and I'm glad they both survived their early months. Then again, neither of them arrested or had severe IVHs.

Here's a question--what does social services have to say about the parents coming to blows on the unit? Doesn't seem like they'd want to send a fragile neonate home to that.

You have my prayers and admiration.

Miranda

DDRN4me · Jan 7, 2005

WOW quite a thread...especially at 6 am. I work with the "after the hospital" end of this question..."my kids" are the ones with these horror stories. Many of them have great lives, but then there are the others who you just wonder why. sounds like this whole family needs some serious counseling. Not just about babyJ, but the whole unhelathy dynamic going on. Maybe mom is feeling guilty (justified or not ) and that is why she is being so tenacious. i agree that she definitely needs to have some kind of counseling. Also, continually reminding her that J is infact, uncomfotable may help her realize this may not be the best for him. My thoughts and prayers are with you and this family

KarenNICU · Jan 7, 2005

I have just been accepted in the NICU of a hospital in Los Angeles with 6 months trainning. I'm a new graduate.

I have read your posts and cried a few tears. It's been a good introduction to what is about to come.

I'm very giving and I'm a little afraid that will not be too good, as I tend to become emotionally involved. Nevertheless I'm incredibly proud to be working with such compassionate people. I'd love advice from anyone willing to give.