Thursday, March 15, 2007

Glass Half Full or Half Empty?

I'm smashing that damn glass!

There, it's done. Now no one can use it anymore.

Should we really be measuring success based on inaccurate research?

Call me a pessimist. I don't care. The facts show that preemies are not escaping the effects of the NICU. Period.

I am not saying that ALL preemies are majorly affected, long term. There are success stories. I am honestly not disputing that fact. What I am disputing is the number of them. Parents do not share honest information about their child and adult preemies do not either.

I worry what this misinformation does for the future preemies. If neonatologists think the glass if half full, will they try to improve conditions in the NICU?

I hope everyone takes a moment and checks out Clark's post on pain in in the NICU.

20 comments:

Helen Harrison said...

Yes! Please check out Clark's post. And then ask yourself, honestly: Is this care reasonable? Is it humane?

Would *you* submit to this kind of care to save your own life?

Knowing what I now know, I certainly wouldn't!

Anonymous said...

Are you seriously suggesting that heel sticks are inhumane? Painful...certainly. But I am pretty certain I would not asked to be let go based on pain from heel sticks.

Helen Harrison said...

To anon who said: "Are you seriously suggesting that heel sticks are inhumane? Painful...certainly. But I am pretty certain I would not asked to be let go based on pain from heel sticks."

No! Please *read* the comments in response to this post. My son was subjected to *major* unanesthetized surgery as were/are many other preemies.

They are subjected to levels of pain that would never be tolerated in adult care. Please read the comments to Clark's post!!!!

Clark Bartram said...

Helen,

In all fairness, nobody performs surgery on infants without appropriate anaesthesia. If you know of this being done today, please provide some information on that. It is during the pain control as the child recovers from major surgery that the ball is sometime dropped to various degrees.

And your question, "Would *you* submit to this kind of care to save your own life?" is loaded. I personally would submit to any degree of pain if it meant that my life, and it's quality, would be saved.

Comparing our opinions on such a broad all encompassing scenario as your question sets up isn't helpful when it comes to the reality of caring for neonates of any gestational age. Should we not correct a duodenal atresia in a 36 weeker because they might have significant pain for a few days afterwards? Should we not put a 30 weeker with a diaphragmatic hernia on ECMO because they will be in severe pain for a couple weeks?

I am very sympathetic to your concerns about the push to lower the age of viability and the long term outcomes of our micro premie population. And I am a proponent of improved methods of controlling pain in any child but pain is not an appropriate reason to not resuscitate these babies. You have much better ammunition in that respect.

Clark Bartram said...

Oh, and heel sticks are inhumane if they are done without a valid reason and without appropriate effort to control the resulting pain.

Long Time Listener said...

I wish we could insist that those writing the research are made to be clearer in their reporting of findings. Obviously, critiquiing the research before publication is the job of the reviewers and the editor but I do wonder if they really insist on the same light/scrutiny be placed on all outcomes. That - and provide a proper glossary. I feel like we should have a traffic light system - the positive outcomes in green, the poorer outcomes in red! I know - it ain't gonna happen, but it would sure show if similar weight has been given to all outcomes! Just a throw away comment as I am tired of wading through percentages and outcomes!
As I have said eleswhere, anyone should be able to read the research- how we interpret it is then up to the reader. But, I do think that maybe if editiors asked researchers to be clearer in their reporting, then we all may feel that we can make our minds up on solid, well explained research.

Lori said...

Clark-
In all fairness, the fact that babies were ever operated on without anesthesia is still worthy of discussion and warrants our continued skepticism about the decisions that can be made in the name of medicine.

I have a personal friend whose son was born at 24 weeks twenty one years ago. He lived for three months in an NICU before succumbing to death. Like Helen's son, her son was also subjected to major surgery without anesthesia, without his parent's knowledge. When she and her husband learned of that reality, long after his death, they were in agony. She has learned to live with that terrible knowledge, but I doubt a day goes by that she still doesn't think of her firstborn son's painful three months he spent in this world.

In the grand scheme of things, 20 years ago is not that long ago. It is hardly ancient history. Just because this might be an embarrassing piece of the history of neonatal medicine doesn't mean it should be swept under the rug. To do so belittles the considerable pain those babies endured, and the considerable pain their families endure today. Sometimes our emotional responses to people's pain can be just as inhumane.

Anonymous said...

Any surgery, whether "Major" or minor, deserves anesthesia. I'm sorry, but if this does still happen, those people need to be punished. I have difficulty believing as Helen quotes "...subjected to *major* unanesthetized surgery as were/***are many*** other preemies." that infants ARE STILL having surgery without appropriate pain control...and as Clark mentions, yes, sometimes the ball is dropped afterwards, but this happens in the adult world too..

Clark Bartram said...

Well I certainly didn't mean to imply that anything should be swept under the rug. I just wrote a post where I cleary mentioned how insane it is that we only recently accepted that these infants feel pain. I just objected to the specific way that Helen expressed her prior experience in a question that was entirely too emotional and general to be of any help.

Lori said...

Clark-
I read your post, and I think it is great you are raising these issues. I always appreciate those in the medical field who are willing to admit we don't have the all the answers, and are not afraid to grapple with the tough questions.

I think what ruffled me was the somewhat clinical response to what could be construed to be an "emotional" response by a parent who has truly "been there." The idea that the emotional responses of parents and patients can't be of help is not supported by history. It is very often the emotional response of those who have suffered, who fight most passionately for change and research. The protocol change in obstetrics regarding Group B Strep came from the emotional response of parents. The battles being waged against stillbirth are predominantly being fought by emotional parents. The Susan G. Komen foundation was started by one very emotional woman who made a promise to her dying sister. I think our emotional responses to the problems in this world often carry the most power to truly bring about change.

I will also admit my response came from a personal, and albeit emotional level. In my dozens of conversations with various medical professionals following the premature birth and then deaths of my twins- obstetricians, pediatricians, perinatologists, reproductive endocrinologists, neonatalogists, nurses- I can name about three who ever once just said, "I am so sorry for your loss." Personally, I think that is something doctors could work on too. I am speaking generally, not about you specifically.

Helen Harrison said...

to Clark Bartram who said:

"In all fairness, nobody performs surgery on infants without appropriate anaesthesia. If you know of this being done today, please provide some information on that."

This is exactly what I was told 20 years ago when the unanesthetized surgery debate began. Everyone said that what they were doing was "appropriate."

I realize that many doctors see pain control as an important goal now which they didn't previously, since they did not believe babies even felt pain 20 years ago.

What actually goes on in the ER today is something I'm not privy to, but I have been told by nurses, relatively recently, that there are still surgeons and neonatologists who do not use anesthesia (only paralytic drugs) on infant surgical patients.

I have also heard that anesthesia for chest tube insertions, intubations, arterial catheterizations, certain eye procedures and other extremely painful maneuvers are not always/often given, depending on the NICU. I believe Sunny Anand has documented at least some of this.

Then there is the chronic pain of ventilator care and surgical recovery -- not to mention the gaping wounds in babies born with gelatinous skin only one cell layer thick, skin that peels off to the touch.

I would probably not personally want life-saving, but excruciatingly painful treatment, in the situations you mention if I were the patient. Certainly I would not consent to ECMO.

I think the immediate and often life-long pain these children and their families endure is a perfectly valid reason to forgo resuscitation. It is actually the one I find most compelling.

Jennifer said...

My father was telling me about my time in the NICU (in 1978) just recently. I am an ex-30 weeker.

The staff in the NICU (St. Elizabeth's hospital in Boston, MA) were PURPOSEFULLY keep information from my father. He has a temper and it would flare when he would learn of something second/third hand.

I had a major 'event' at 3 weeks old which required chest compressions. Everything worked, obviously as I am here - but the hospital never told my father or mother what happened. He learned of it 2 days before my discharge (3 months later) and became irrate, justifiably. Two weeks after that 'event' I had surgery to repair my PDA (at least thats what my father thought it was).

After my discharge my father ordered copies of my medical records and gave them to his brother (a orthopedic surgeon) to look over as they were considering legal action. In reviewing them my uncle found they didn't use ANY anesthetic in my PDA surgery, or at any time in my NICU stay (and my stay was riddled with many procedures - it was a teaching hospital and I was the youngest surviving neonate they had there in a long time, so prime candidate for 'testing on').

My brother was born 16 months later at a different hospital and legal action was never sought. In my opinon it should have been.

Only after having my own preemie and learning about how devestating prematurity can be am I able to look at my history and see how much can be attributed to prematurity itself - and it makes me mad that my parents were never told of the possible connection. It, most certainly, could have saved me from all the medical procedures I had as a child/pre-teen. It would have also been nice to know about the possiblity of me having a preemie just because I was a preemie, I would have been more diligent in demanding services during my prenatal care.

The Preemie Experiment said...

I can't speak for current practice but I can tell you that when Paige was born, 8 years ago, they were not using any pain control.

I hope protocol has changed because it was heart wrenching to watch them place her central line, IV's for blood transfusions, etc knowing she could feel it all. She almost always had an episode following a procedure.

As far as heel sticks. She had them hourly at times. They are horrible. The shape of her heels are actually abnormal, as are others preemies that I have seen. And, she is missing the fat pockets on her heels too. If you touch her heels, to this day, you better watch out.

terri w/2 said...

One of my twins who is nearly now 21, had a botched ventriculostomy done in the NICU when she was 2 months old. We KNEW the procedure was botched because nurses met us at the door when we visited that day and told us to prepare ourselves for how she looked. Her skull had collapsed because the physician's assistant (not a neurosurgeon mind you) who had done the procedure, removed the fluid from her ventricles too quickly. Interestingly, the cranial ultrasounds done following the procedure mysteriously disappeared. .we suspect that she hemorrhaged again, but cannot prove it.

A year later after numerous concerns about her medical care post-NICU, we decided to abandon that particular facility and go to one of the largest pediatric places in our state for continued care. .we ordered her NICU records. . what we found was so horrific, it sent me into a depression that lasted for months.

The ventriculostomy done at 2 months apparently caused an uproar in the NICU among the nursing staff. They documented the verbal exchange with the PA begging him not to do the procedure until my daughter had received anesthesia. He refused. He proceeded to place the large needle through her skull and into her ventricle and removed fluid. Obviously, the guy had no clue what he was doing. .

On top of that, my daughter had 500 heel sticks done during her stay until the point her feet began to break down.

Pain is the reason I will never, ever become an NICU nurse once I graduate from my RN program. There is no way in hell anyone could make me do or stand by and watch this kind of thing. I do not know how anyone truly can feel good about subjecting children and families to this kind of torture.

23wktwins'mommy said...

This is a very interesting debate to me. I gave birth to 23 and 5/7 twins just shy of 6 months ago. We were informed of what to expect in the NICU and possible long term outcomes, at every stage of the game. I guess what I find difficult is the expectation that parents can really make a 100% sound decision in most cases involving the birth of a micro preemie. I hadn't had ANY issues in my pregnancy and only found out I was in preterm labor due to a routine internal ultrasound. We had a NICU consult (mind you I am in preterm labor, 3 centimeters dialated, have bonded with these twins, and am scared out of my mind.) They tried all they could and I still delievered 3 days later. I guess what is hard for me as a parent to grasp is how do you say "I don't want you to try and save my child/children?" when you have medical professionals telling you they have a shot, and that NO ONE knows what the outcome will be...even if the statistics are grim. I guess I know I couldn't live with myself had I opted just to give up right away. We had a rocky road, but what I am thankful for is we were never lied to. We even made out son a DNR at one point, at the Drs suggestion, because we opted to allow our son to make the decision whether or not he was going to stay with us. I don't know what is considered dramatic means anymore, because saving micropreemies has become routine in many NICUs. I'd like to think I did what was best for my two, but reading these posts does evoke guilt because I know they felt pain, (even though we had a great NICU who did everything possible to avoid it.) I guess my point/question is if a parent is informed of the risks, but you know there are miracles out there, how do you know what to do?

Helen Harrison said...

Mom of 23 weeks twins asked:
"I guess my point/question is if a parent is informed of the risks, but you know there are miracles out there, how do you know what to do?"

What helped me formulate my own views was growing up with a brother who had mild autism/schizophrenia.

I knew that this outcome (which has been very, very difficult for my brother and our family) would likely be the best case scenario.
This would be the only realistic "miracle" we could hope for.

I was used to discussing ethical/philosophical issues like these with my parents and my husband. Having a bit of a medical background also helped.

I don't really know that any one strategy will help all parents to understand the issues of prematurity realistically. But it would help if the media stopped (or accurately follow-up on)the "Miracle Baby" stories which are filled with distortions and unrealistic hopes and expectations.

The coverage of the recent birth of the alleged 21-weeker (who, as has been explained on the blogs previously, was really a 23 or 24 weeker) is a case in point.

I'd also like to see a curriculum addition to all "famly life," "sex-ed" and biology courses in high schools that honestly discusses fetal development and the consequences of interruptions to that development.

I think prospective parents should be encouraged to talk to each other about their value systems and how their famliy values relate to the possible birth of a baby whose treatment will be extremely painful, long, and unlikely to result in a live, normal, healthy child. Do they really know what they are going to have to face in terms of probable life-long care for such a child?

Prenatal directives might be used to allow parents to state their preferences in the event of the birth of a marginally viable baby in advance.

Doctors and hospitals should also be transparent about their resuscitation and care philosophies so that parents can choose a center and/or doctors in philosophic agreement with them.

Comfort care for marginally viable babies should be described for propsective parents as an alternative to aggressive care.

Neonatal hospices, in which parents can help give care give comfort care for their dying babies, should be widely available.

There is no perfect solution here, but parents should have some idea of what is involved in saving and caring for a marginally viable baby well before they find themselves in the DR.

Helen Harrison said...

Here is an article in which NICU nurses discuss the changes they would like to see made.

From the San Francisco Examiner:

Saving preemies takes toll on nurses
Keeping extremely early newborns alive tests emotions, ethics

Ulysses Torassa, EXAMINER MEDICAL WRITER

Monday, March 22, 1999

The heroic, often invasive, attempts to save premature babies at the earliest stages of their lives apparently are leaving many nurses in emotional and ethical distress.

So finds a survey published this month of neonatal intensive-care unit nurses at California Pacific Medical Center in San Francisco. Many said they felt parents of extremely low birth weight babies probably don't realize how agonizing the treatments are that keep their children alive, nor do they fully comprehend the poor quality of life their babies might face if they do live.

"Are we crossing over the line of what nature has meant to reject and what we save? Are we trying to play GOD?" wrote a longtime nurse in the medical center's neonatal intensive care unit.

Wrote another nurse in the unit: "Sometimes I feel like we are in this contest to see how young we can go."

Many of the difficult cases involve couples who used fertility treatments, such as the Texas woman who gave birth to octuplets, one of whom later died.

California Pacific has a fertility clinic, and nurses said families who spend tens of thousands of dollars to get pregnant often are reluctant to let go of even very sick babies.

The anguish among the nursing staff is palpable in the comments, excerpted in an article in the latest issue of the Cambridge Quarterly of Healthcare Ethics.

But their feelings apparently aren't unique to California Pacific; neonatal nurses around the country are having trouble stomaching the prospect of prodding and poking tiny babies to prolong lives that might end days or weeks later, or that will be seriously compromised forever.

"Many of us have lived through this angst with literally dozens and dozens of families over our careers," said Madge Buus-Frank, a neonatal nurse practitioner and consultant in New Hampshire. She is working on a national teaching program on ethics issues for neonatal nurses.

"My sense in talking with nurses," she said, "is that there is an accumulative burden that you deal with over time from babies that have survived and come back for visits and are not the healthy children you would have wished for the family. And also from the babies that didn't make it."

The new technologies, including artificial linings for the lungs and high-pressure ventilation, have produced "miracle" babies who were born extremely early but went on to thrive. But many others ended up with cerebral palsy, retardation, blindness and developmental delays.

And the infants being kept alive are younger than ever.

"When I first started in this field, we would never have saved anything less than 27 weeks and 1,000 grams," said Renee Reynolds, who has been a neonatal intensive care unit nurse at California Pacific for 19 years. Now, infants born at 23 weeks weighing less than 500 grams (1.1 pounds) are often resuscitated. A normal pregnancy lasts 36 to 40 weeks.

Statistics cited in the Cambridge Quarterly found that at one major medical center, 80 percent of babies born between 22 and 23 weeks died, and 37 percent of those born between 24 and 25 weeks didn't make it. A large portion of those who survived ended up with handicaps.

A string of troubling cases at California Pacific, where extremely early infants were given "no-holds-barred" treatment, prompted several staff nurses to take their concerns to the hospital's ethics committee in 1997, according to the article.

The survey was taken to gauge concerns. Twenty-nine of the approximately 100 staff members responded to the questionnaire; most had at least 10 years experience in the unit.

"When I came back with the results, people were blown away by the fact that these were seasoned, front-line nurses who were experiencing such a high degree of moral distress," said Pam Hefferman, a co-author of the study.

Other nurses quoted in the survey expressed concerns about the effect the work is having on their own psyches.

"Basically, after working in the NICU for 10 years, I have become numb to my emotions involving ethical concerns," wrote one nurse.

Another said she had many memories of going home hating her job and angry at doctors after spending many nights with a baby born at 23 weeks - the very edge of viability.

Several also said they felt parents were not counseled well enough about how poor their child's chances were, or what they faced even if the infant survived.

"Parents have no idea what their babies will be going through in the months to come. They don't see all the suctioning, all the lab draws, all the sticks and pokes . . . all the handling, X-rays, ultrasounds, IV restarts . . . the lights and sounds," she wrote. "If I were to give birth to a premature baby born at 22-25 weeks, and knowing what I do . . . I would let that baby go! Just because we have the technology to keep those babies alive doesn't mean we should use it on every baby that is born."

Another wrote that the increasing number of women relying on fertility treatments and in vitro fertilization (IVF) has led to more pressure on the staff to prolong the lives of marginal babies. Such reproductive treatments lead more often to multiple births and complications.

"The concern is not for the comfort of the infant; the concern is to give the parents their child no matter what," the nurse wrote.

In the weeks before the survey was taken, three children had to undergo ileostomies - removal of their large intestine - and left the hospital with bags attached to their bodies to collect feces, one nurse wrote.

"One mother, left with one surviving twin who has an ileostomy, told me that she is glad the sibling died and does not have to endure what the living twin is enduring," the nurse said. "She also stated that knowing what she knows now, she would not have had IVF."

The survey was an eye-opener for William Andereck, chairman of the ethics committee at California Pacific Medical Center.

"We were shocked at the level of moral stress that the staff was subjected to," he said.

Still, he said, the harsh reality is that society has

"statistically unrealistic hopes" and the medical staff has to absorb much of that.

"We are the ones who are carrying the day-to-day grief for caring for these people, and we have the sinking feeling that hopes are getting in the way of reality," he said. "Caregivers have to suck up some of the pain caused by some of those irrational decisions. We have to prepare ourselves."

Kathy Lewis, medical director for the neonatal intensive care unit, agreed. She said doctors give families the latest information on outcomes for similar children, and it is up to them to pursue heroic measures.

"Let their values determine whether they can accept that outcome or not," she said.

Since the survey, Andereck said, the hospital has begun to offer the staff ethical conferences on the issues.

Recently, the staff viewed a documentary about the anguish one couple in New Hampshire went through when their twin boys were born at 24 weeks.

One had severe brain damage and died. The other stayed in the hospital for six months undergoing treatments for brain and heart problems. The couple's marriage suffered, and they finally took home the surviving twin to what appeared to be an uncertain future.

The staff who saw the film said they were deeply moved, even shaken, Reynolds said.

"It's very tragic, and it's very right," she said.

Reynolds said she sympathized with parents faced with life-and-death decisions, and with the doctors expected to do whatever they can to save these children's lives.

"I think the doctors really feel they are advocating for their patients," she said. "Plus, they are afraid to tell some parents at 24 weeks that we should let it die and then these parents find out two years later than somebody else's 24-weeker came out fine."

Steve Heilig of the San Francisco Medical Society, a co-author of the journal article, said the nurses' concerns are a "symptom of success."

"The technology has advanced so that you can really do all of these things, and what you see is that the people in charge of the technology - the specialists and physicians - may have a different view of it than the nurses who are at the bedside all of the time."

Three neonatal doctors responded in the survey. However, their comments focused more on the need to respect the authority of physicians and parents as final decision-makers rather than their own feelings about the wisdom of employing some treatments.

Several nurses said they were happy to be interviewed on the subject because they want people to be aware of the difficulties faced by tiny infants.

They were concerned that too often the media focuses only on the miracle children who make it through and not on the many others who don't, or who end up poorly.

"Get this story in the paper. Get people to start talking about this over the kitchen table before they're in this situation," said Linda Weaver, a nurse practitioner in the unit.

23wktwins'mommy said...

Helen,
I do appreciate you taking the time to respond and give such a detailed answer. When I randomly googled one day and came across some of your writing, I have to be honest, I thought you were very harsh and extremely negative. I didn't give you a fair evaluation, I guess I just couldn't accept that some people think saving 23 weekers is wrong. Now I see that what you believe is based on medical facts and personal experience. I understand where you are coming from, and in many places I agree. I have been tormented with the delievery of my 23 weekers, and have struggled with my decisions. I agree that not all micropreemies should be saved. I was witness to a very, very sick micropreemie, whom the Drs and nurses tried to tell the parents was not going to make it and begged for comfort measures. The parents declined, and in a sense I felt a huge amount of guilt. You see, they had twins (thought to be 28 weekers, but they weighed about 600 grams a peice, either extremely IUGR or the dates were off). Either way, they primarily spoke Spanish and would come to our family on many occasions asking about our experience. They saw our twins when they were full term adjusted age. They were (sill are) cute, eating from a bottle, no NEC, no hernias, no major brain bleeds, and on a nasal cannula. Things looked great...23 weekers who were making it home on just O2. But our cases were very different. Our daughter did quite well for a 23 weeker, and although our son was quite sick, we were in constant communication with Drs and had very real limits to what we were willing to do to keep him alive. I have detailed the many decisions and issues that came up over our NICU stay in my blog, and although the tone is usually highly optimistic and maybe even a little too positive, it was my frame of mind at that time. Needless to say, that very sick child was kept alive at the parent's request, but the Drs told them flat out they were not willing to do much else and convined the parents to make her a DNR (basically just told them they would not be taking any drastic measures to bring her back if her heart was to stop...I still don't think the parents really were on board with that, but the Drs made it extremely clear that this was their position.) The parents opted not to take their child off life support and have her die in their arms which was an option presented to them one night we were there. They believed she would be saved, they told us. She eventualy died on the oscillator while heavily sedated. I know there are parents out there who would do anything to try and save their child. I saw preemies with sats in the 50s and below for hours and days whose parents couldn't let them go. I talked to parents whose child had grade IV bleeds who had significant brain injury who couldn't say stop treatment even when the Drs told them it wouldn't be unethical in the least. These are their choices, and I have difficulty passing judgement on them. We were very lucky to have a NICU who explained things to us, and they knew where we stood in terms of extreme measures. I think we came real close to extreme measures for our son, but just when we were about to make the decision to discontinue support, he made it onto the conventional vent and medically "turned the corner" so to speak. I agree with our NICU's approach. Not all babies are viable, not at 23 weeks, not at 24 weeks, not even full term kids who are very ill. There needs to be a limit to how much we do for preemies, I agree. I guess what I am struggling with is the decision not to treat right from the start. While in labor and panicked, it is difficult and usually impossible to do research for yourself or to fully accept everything you are hearing from the Drs. You're informed that there are 23 weekers who've been saved, they tell you some do quite well, for me I had to at least give them a shot, which meant electing to resuscitate immediately after delievery. But I do hear you on having these conversations before you even get pregnant. Values and beliefs need to be discussed before hand.
On the point of if I could change things would I? I would. But I guess what I get confused about is change what? If I could, I would wave a wand and keep them in me for 40 weeks. I would take away the pain they felt in the NICU, I would give them better lungs. I would take away my son's reflux. I would make sure they didn't have any brain damage. (they are too young yet to know what we will be faced with). But I wouldn't take them away. I wouldn't take away my decision to try and treat them. When we are talking about not changing anything, how many are talking about going back in time and opting not to treat or opting to discontinue treatment OR wanting to take away our children's pain and disabilities...still have them but have them be healthy? I think there is a difference.

niobe said...

Yeah, we kind of ended up with that smashed glass.

The hospital made it clear that it was probably not worth taking aggressive measures for our 25w6d daughter, mainly because I suffered from preeclampsia and she had IUGR. She died after 4 hours and my husband's feeling is that we dodged a bullet.

Me, I keep wondering if a few more days would have made a difference.

Helen Harrison said...

To 23wktwins'mommy said:

I agree with you about the choices parents make, and as long as the parents are given options and honestly told the probable outcomes, I wouldn't second guess them either.

These situations are so complicated, and we all have to do the best we can with the information available. We each have to make a decision we can live with.