Ethical question

BittyBabyGrower, MSN, RN · Nov 25, 2008

A lot of what you asked depends on the attending at the time in the unit. We have some that are very willing to do pallative care and involve hospice right away, others don't go that route and we do everything until baby declares he doens't want to live anymore. We also have fellows who know when to stop in the DR and others that won't.

Insurance companies do not have a say in ethical things, but I suppose that if the child was not an ICU candidate anymore, then they could refuse to pay the bill, and then at that point we would have to look at long term options or the kid would have to go on medicaid.

As for the parents refusing treatment....again, if the docs feel that the baby needs treatment they can petition the court, but it depends on the doc. We would most likely get social work involved and ethics. But ethics can't make either party do something, they can only suggest options. The parents could sign baby out AMA, but then the insurance will not pay the bill, so they would be saddled with a huge bill.

You have brought up some great topic starters!

hikernurse · Nov 26, 2008

Most of the decisions are made in care conferences with parents, doctors, nurses, SW, and any team members who participate in care. The parents make the final decision, but it can sometimes take a while. We do what we can to support them and although I may be biased, I think nurses are the ones who offer the most support as they decide and then through the care given--whether it's hospice, palliative or removing support.

We have had babies whose parents have wanted everything done although their baby has basically no chance--some of these have gone through the ethics committee, but they don't have a lot of decision making power. Watching a baby die in the arms of his/her parents makes me very sad, but continuing to torture (and that's a great word for it) the rare baby who is being kept alive solely for his parents sake breaks my heart.

On the other side, though, I know how I feel as a nurse, but I'm not sure what my decision would be as a parent. That's a pretty big decision to make for another person, someone you dearly love. I can't believe the strength and grace some of these parents demonstrate with the decisions they have to make.

SteveNNP, MSN, NP · Nov 26, 2008

There is a great difference between killing someone and allowing the course of nature to be taken. I personally believe that keeping an innocent one alive on machines tubes and wires, while their bodies are telling us at every moment to let them go is against what God wants.

Sweeper933 · Nov 26, 2008

Removing life support is not killing someone. It is allowing them to pass as God and nature intended, to end their pain and suffering. Do I know that had we continued to keep them alive that they might survive? Not always. But when we are faced with that horrible decision, we are all at peace inside knowing that we are doing the right thing for the patient.

Extremely well said Steve.

texas2007, BSN, RN · Nov 26, 2008

I do know that I can sense when a spirit has left, and all that remains lying in that bed is an empty shell of a body kept alive by machines, or a child whose every fiber is telling us to let her go in peace.
Removing life support is not killing someone. It is allowing them to pass as God and nature intended, to end their pain and suffering. Do I know that had we continued to keep them alive that they might survive? Not always. But when we are faced with that horrible decision, we are all at peace inside knowing that we are doing the right thing for the patient.

:yeahthat: There's worse things than death!!! Nothing like seeing the old chronics paralyzed for months with tears rolling down their cheeks.

I will have been a NICU nurse for 1 yr in January. Unfortunately in that year, I have seen more suffering than I would have thought. Usually it's the parents who want everything possible done but on the opposite side of the spectrum, some of our neos like to talk parents out of taking their kid off. "But we still have more options" Cmon really, the kid isn't a science project... But in the end, it's all up to the parent. Have had a few 23 and change down in L&D who were adament about no resuscitation until they were 24 weeks (we routinely do 23 wk/500g) and they got their wish. Not sure what happens if a family doesn't want their child with a fairly good prognosis to be saved, have never seen it.

BittyBabyGrower, MSN, RN · Nov 29, 2008

Well said Steve!!! We have several kids right now that all of us are struggling with and it is starting to make me wonder if I can do this job until I retire....sometimes I wish the docs would remember first do no harm......and let us comfort them as Florence Nightengale intended nurses to do.

rnpreemie06 · Dec 1, 2008

I can only respond to this question from my own experience, prior to becoming a NICU nurse, or even attending nursing school, I was a mother to a beautiful term baby with a diagnosis of alobar holoprosencephaly. Completely undiagnosed prior to birth, with very good prenatal care. This condition was incompatible with life, she had a cleft lip and palate and within her 11 days of life we chose to have a GT placed in anticipation of taking her home and having whatever time with her we were to be given. She required no supplemental O2. For those that are unaware of this rare condition her brain had not developed much further than her brain stem. We chose palliative care, DNR and on her 11th day of life she passed away in my arms before she was discharged. We were confident enough to know their would be no miracle that could fix the problem she had and we let nature take its course I guess you could say.

Now nearly 8 yrs later I work in the very NICU she was cared for in, and I see cases where family need to accept what is beyond their control. I know that acceptance is beyond what anyone should have to face, losing a newborn child, it is something that no one can understand unless they have lived it. And to make those critical decisions in such an emotional state, when everything in you screams you want that baby no matter what. But again most parents don't comprehend what all "no matter what" can entail. We have had the ethics committee meet with parents and team members concerning situations, who wins in these meetings I have no idea, it seems the baby continues to suffer until the parents finally let go. I have seen babies look anything but human after all their systems are failing, and we are doing everything for them, and they still become so septic you can't recognize them.

Is there an easy answer...I don't think there can be. But there needs to be a limit somehow, MD's shouldn't give parents false hope while parents hang on to every % of O2 we wean..just to go back up by 3% the next hour...yo-yo'ing for months and months when theyre lungs are incapable of ever surviving off the vent, and Gr IV IVH bilaterally..etc etc. Don't know if this answered anything, but thought sharing my own experience from both sides might be beneficial.

Best Wishes....

......and after I lost my precious angel, I was blessed with beautiful healthy twins, and a desire to give to those that have been where I had. I couldn't imagine doing anything else with my life now...I love these babies!!!!!

rnpreemie06:nurse:

IlovebabyfeetRN · Dec 4, 2008

Thank you all for this thread. I had my first experience this past weekend with elective removal of life support for a 16 day old 23 2/7 weeker. His first blood culture was positive for group beta septicemia, he had bilateral grade III/IV IVH with hydrocephalus, and had been on the HFOV for a week. It was a roller coaster weekend. Saturday I was feeling positive because I identified a left sided pneumothorax before he became symptomatic or crashed through routine transillumination with his assessment. Unfortuately, I think this was the proverbial straw to break the camel's back. He seemed to stabilize by morning (I work 12 hour night shifts), but when I came back that evening, the first words from the other nurse's mouth were that the parents were coming in and the doctor would be speaking to them about withdrawal of support.

It was an odd foggy out of body sensation for the next twelve hours. I felt at times like I would burst into tears and at other moments I was able to distract myself with the "tasks" to keep my composure. I felt I needed to be as solid as I could for his parents without losing my caring.

These parents have another son who was born just after 22 weeks who has severe learning disabilities. They were not blind to the reality that this tender little soul had far more problems than their first son. He was in 100% Fio2 for over 24 hours, the chest tube was still bubbling, his urine output had dropped. We had him nearly maxed out on dopamine and dobutamine and he had a morphine drip. His sats still wavered from the 60s to 70s despite all this support.

Three times when the parents felt they had decided to remove support, he would briefly bounce up to the 90's and then they and the doctor would decide to wait. After the third time of "preparing" I had to step away to the break room to take several deep breaths.

While I was back there, the respiratory therapist came to find me because they were "ready"... as ready as you can be to lose your baby I suppose.

Per the parents' request, the monitors were discontinued before we began to remove the equipment from the infant. They did not wish to watch his heart rate drop or his sats drop. It was an agonizingly long process. I gave him Versed and turned up the morphine to the maximum. The doctor removed the chest tube, I took out the PAL line and discontinued all but the morphine infusion. Then I gently wrapped him in a soft blue baby blanket and wiped his face around the breathing tube. His mom dabbed him with Sween to the tiny dry flakes on his cheeks. We gently removed the tube and silenced the oscillator.

As I handed him to his mother, his tiny eyes flew open to her face. This took my breath away. I gave her a warm cloth to gently wipe his mouth. Then I quietly moved away so his mother and father could see what their little son looked like for the first time just as a baby.

His tiny heart continued for almost forty minutes even though he barely attempted to breathe off the ventilator.

Exactly a week before, I had put my three year old kitty to sleep in the late stages of feline aids. Her death seemed more swift and painless.

It is a tough learning experience. I have seen death before in the NICU, but this is the first time I have ever experienced elective withdrawal. It was definitely better than to have seen him crash. ..but felt just as helpless.

I was there the night he was born and witnessed and assisted with his rescuscitation. He barely survived that day...but we had hoped...

There is definitely an ethical side to extremely premature infants. The envelope seems to get pushed farther and farther. We have had three infants less than 23 weeks gestation survive in the past year and a half...but I can tell you not one went home with his parents (all boys, all Hispanic). All three are in long term care facilities and none can breathe without oxygen and none is able to feed adequately by mouth, if at all.

When parents insist on "do everything you can" I often think they can't possibly understand what they might be getting themselves into and what they may witness in their baby's day to day struggles.

Again...thanks for listening and for this thread. Very helpful to me this particular week.

I love baby feet...RNC

Pediatric Critical Care Columnist · Dec 4, 2008

Hugs to you, Babyfeet. The first time won't necessarily be the worst, but it's sure hard. The unpredictability of withdrawing is one of the hardest parts. You did a good job; it truly takes special people to do what we do. And to keep coming back and doing it all over again. Those parents will remember you forever.

IlovebabyfeetRN · Dec 4, 2008

Thank you. I hope they can remember me in a positive way. I think even when you know it is the best decision, you still question the what ifs. I very much believe this baby was suffering...especially with the chest tube in place...and the oscillator cannot be a pleasant ride.

I have tried to learn from it. The best part for me was to be able to protect the parents' wishes. They absolutely opposed the baby going to the morgue so I jumped through a few hoops to get a funeral director to meet me face to face at 3am right in the NICU. The more I thought about it, the more I thought no baby should have to go anywhere near the morgue. The psychological impact on these parents if he had to go there would have been worse than experiencing his death.

The thing is, even with experiences like this, my place is the NICU. I knew from the day I shadowed in there during nursing school. Anything else would be a compromise of my passion and spirit. I am sure you all can closely relate! :heartbeat:saint: (kisses and hugs to the memory of the teeny guy who now will forever hold a place in my heart and be a guide to my steps as I go to work each day)

Pediatric Critical Care Columnist · Dec 5, 2008

Great job! I know I refuse to put the babies in shrouds before I take them off the unit. I bundle them in a soft blanket and carry them down. Some of our families have religious beliefs that cause them to want to take the baby home with them when they leave, and unless the ME needs to be involved, we make whatever arrangements necessary to give them that. One baby left the unit in a Rubbermaid bin.

Trust me when I say that parents remember you forever. Many years ago my own son was in PICU and was not expected to survive the weekend. On the Sunday he was so unstable that his nurse had me priming tubing and documenting fluid boluses. (Long before I was entitled to call myself an RN.) He defied the naysayers and came home several weeks after that day. 18 years later I ran into her at a conference and recognized her in a heartbeat. She didn't recognize me right away, but she remembered my name and the moment that she made the connection to my son, she burst into tears. It was a special event in my life to see her again and let her know how much I valued her professionalism, her compassion and her skill.