withdrawal/withholding of treatment

dawngloves, BSN, RN · Sep 19, 2003

#1 Posset????

#2 Yes, I blame the docs. It should be made clear from the start of PTL the prognosis of a 23 weeker. So many think a preemie is just a little baby, not a sick, under developed baby. It's hard to swallow once you deliver, from both the staff and parents, but a point worth taken.

fergus51 · Sep 19, 2003

I don't know why they are even rescucitating 23 weekers... Just because we can doesn't mean we should.

Mira · Sep 19, 2003

Yes,small vomits/spit.When the feed is delayed by 15minutes,when the baby is still wearing the same clothes he had the previous day,when the baby did not have his solids,when the baby is sleeping(the baby got bored as the nurse was not paying attention/playing w him-?hence the nurse is negligent for not giving intellectual stimulation),when the nurse does not answer the SaO2 alarm at once while the baby is kicking it despite explanation to the parents from the start that the alarm is sensitive to movements and we just need to look at the baby for any changes.The list of complaints is endless,that sometimes we are feeling lucky that we are not in a country where litigations are common practice,but sometimes we are thinking perhaps it`s better because we will know who is at fault,but perhaps it might end up with name blaming.Parents are being tormented with the condition of their child as well,they want to be in control,we take that into consideration,but sometimes we get tired and look back thinking what is the point of all the effort when the quality of life is non-existent anyway,but who are we to define what a quality life is?

Sorry if I`m venting.I still adore the babies and I feel very happy when I can see in their movements/eyes that they are going to survive.Miracles happens everyday but I just wish that those who will not have the opportunity to survive and taste life to the fullest just perish in a natural and more dignified way.

NICU_Nurse, BSN, RN · Sep 20, 2003

One of the very first things I do when I meet parents is hand them a booklet for the NICU that explains much of what you're complaining about, tell them to read it right away, and then take them on a step-by-step verbal tour of all equipment and such. I show them the monitors, tell them what which line stands for, explain in laymen's terms how we know if the monitor is reading accurately, and then stress ADAMANTLY that nine times out of ten, you get more by looking at the baby than by looking at the monitor. I tell them what THEY can look for- ie, look at the baby's chest- is it moving? Look at the baby's color- is it changing? Look at the baby, period- is he/she moving or kicking or waving his/her arms? Yes? Great, then he/she's not dead! Next?

I'm joking a little, but you get the idea- my whole trick (not that it's much of a trick, really) is to empower them with information to make them feel like they're part of the team. I don't give cursory updates- I tell them in terms they understand what is going on with their baby, whether it's good or bad (but I try to save the negative stuff for when they're there in person, rather than over the phone- don't like to worry them when they can't get to the nursery). I get them right in there with changing diapers, bathing, feeding, taking temps, whatever they can do, little or small, to make them feel like they are more in control. I give them lots of praise and try to be patient because you're right- they feel helpless and sometimes take it out on the staff when it's really nothing you've done.

As for changing clothes, well, I usually do change the clothes- if they don't have any more clean outfits, I'll put a hospital t-shirt on them. If they want new outfits every day then they'll have to bring them into the unit! If they aren't there, how am I supposed to use them? However, I would mention to them that babies that aren't spitting up or sweating profusely (like withdrawing babies) don't get that dirty- they aren't crawling, they aren't moving. We don't do full baths every single day, and I tell them *why*- the key, I think, is telling them *why*.

"Your baby's skin has a very delicate pH balance, and by bathing them too often, we are actually doing more harm by stripping the natural oil off the skin. Of course, when you go home, you can turn bathtime into a sort of bed-time ritual, which is wonderful, but while they're in the nursery they don't need to be bathed that often. Speaking of which, if you want to bring some more outfits in, we'd be happy to put them on the baby after his/her bath." Then I smile really, really big.

Or, you could just spin the whole thing and say something like, "Oh, I was thinking perhaps YOU'D like to change the baby, since you don't get to do all of that fun stuff when the baby's in the hospital. Would you like to change the baby now?" and then I smile really, really big.

Show 'em all your teeth.

As far as withdrawing care, I don't even have the energy to go into that! I'm sorry! But I will say that I have virtually no control over which babies get resuscitated at birth, or what happens to them when they leave the nursery. My job is caring for them while they are hospitalized and I give damn good care while they're with me and I pray for them and that's all I can do at this point.

I do understand your frustration with the parents, but I feel that in most cases a little extra effort can really turn that around. Just tell yourself again and again: I may be their only connection with this child. I can offer them an opportunity to learn about and bond with their child. I understand that they're lost, confused, angry, and feeling helpless. I can help them feel less so.

And then smile really, really big.

Good luck!

(((((((((((((((((hugs to you)))))))))))))))))

MomNRN, BSN, RN · Sep 20, 2003

I am not an NICU nurse, but a parent who gave birth to a severely brain damaged infant. He lived for 7 weeks in a Level 2 NICU in Peoria. The nurses and doctors were great, but it was obvious that his odds were not that good.

He could not do anything but breathe. He couldn't gag, he couldn't suck, he couldn't swallow. It was devasting. We did consent to the g-tube surgery. Mainly because a feeding tube had been previously inserted into his lung, filling it with formula. That put him back on the vent and made him seriously ill again.

He was always septic, and the list goes on and on. Finally, one day the social worker came to us. We were to talk about his continuing care. We were being pressured to have a central line put in because he had no viable veins left. I was not a nurse yet, so I was thinking this was another difficult operation.

What she told us was that we did not have to consent to anything. That it was our choice to make. We could discontinue the antibiotics, not do the surgery, and take him off all of the alarms. She said, "Sometimes there is a fate worse that death and that might be life itself." While my husband and I wholeheartedly agreed with her, no one had ever voiced "that" option for us.

We chose to make him a DNR and remove all the bells and whistles. Before the hospital would agree to this, their department protocol insisted that all doctors and nurses who had been involved in his care, voice their opinion on our wishes. If anyone of them had dissented, I am assuming it would have gone before their Ethics Committee. Thank God everyone agreed with our wishes.

The DNR was written and alarms removed. Since he couldn't swallow, he had to be suctioned approximately every 30-45 minutes. At my father-in-law's insistence, this was slowly discontinued as well. He held him during his last hours. I was home (2 hours away) with our almost 3-year-old daughter and my husband was in Seattle. I truly did not believe he would die that night or I would have been there (I think). He died in his grandfather's arms.

I am SOOOOOO thankful that the social worker stepped in and gave us this option. While I am sad that he died, I cannot imagine what his life would have been had he lived. I think sometimes our modern technology is too much. We can save you, but we can't always "fix" you.

I now work in a school for special needs children. It is the school my son would have attended had he lived. It brings me joy to make these children and their families lives a bit easier. But, I thank God my child is not there!

NICU_Nurse, BSN, RN · Sep 20, 2003

Thank you for sharing that with us! :kiss

Mira · Sep 22, 2003

MomNRN:I feel sad for your loss but I`m happy that you found the light at the end of the tunnel.

Kristi:I look at the NICU life as a roller coaster ride for parents and babies.Everyday we deal with the emotional/social side of the parents.We exactly do what you`ve been doing and I can say that all the babies (and families) I looked after got the excellent care I can offer(something anyone can be proud of).We have five long term babies(7-14mos.old),we keep them even if we are not a pediatric ward while waiting for the funding from the community or a referral unit for babies w trachys or a proper PICU or pediatric ward.We do a psychosocial meeting every week and we discuss how the parents can participate with the cares(and intellectual stimulation),3 out of 5 give their full participation,the other 2 stays in the unit for 30mins(most of them are unemployed or on government benefits). they make promises and they don`t keep it(well documented).1 of the mother got so many warnings for her verbal abuses,not appropriate but we can`t transfer her baby out(because of funding) and we can`t discharge the baby home because he needs ventilatory support and suctioning,all we can do is to limit visiting time w/c she`s been doing anyway,foster carer is not an option as well(funding again).I am an optimistic person,but something(apart from the previous posts) just triggered me to be morbid lately and I am looking into the outcome of NICU graduates and any guidelines/protocols that hospital follows when the baby got a very poor prognosis.:)

prmenrs, RN · Sep 22, 2003

For really hopeless cases, we have used Hospice on occassion. They do have a program for these children that involves a lot of holding, rocking, pain medication. Family participation is expected, but not required. It is a very good option.

dawngloves, BSN, RN · Sep 23, 2003

Oddly enough this all came up Saturday night!

Had a 5 day old 24 weeker on HFV, Dopa, Dobute, everything but the kitchen sink.

Mom came in and the nurse there gave her an update and told her that the baby was very, very sick and may not recover.

Well this was news to her and boy was she mad!I think the previous staff painted her a much prettier picture or maybe none at all.

She was just about yelling "You people don't know what your doing! You're letting my baby die!" so they had to have a conference with the attending, social services to give her the bottom line.

I think this all could have been avoided from day one. Or perhapes she only heard what she wanted to hear?

kitty29 · Sep 23, 2003

I've been in the NICU to see this happen before...the regret or families even distroyed by what has happened.

In our hospital we do help out 23 weekers, but the docs have had several very honest frank talks with the families ...but sometimes that isn't possible at the start. If things go bad...and that 1st head u/s is bad....there is generally another care conferance with the family.

Not only is the 23 weeker at risk for major handicap....I've seen some 29-30 some weekers who had major problems and you wouldn't have thought they would.

Guess what I'm trying to say....all we can do is be honest from the get-go. But I have to say I've seen many 23 weekers live and be perfect......so who can say....and who can not give the option? Esp. if the baby takes that first breath.

kids · Sep 23, 2003

I was really struck by the situations of some of the babies Mira discribes.

Am I misunderstanding? I got the impression that many of the kidos are still hospitialized because they have trachs.

I can't speak for the rest of the Country but in my part of the US the parents are taught to care for their babies (including vents) and they go home. Ideally private duty nursing can be arranged but it s not a given (on of the worst shortages is in Peds PDN). If a parent (or other immediate family member) can not or will not learn the care the babies go to foster homes.