Surgery on pt "not compatible with life"

[umcRN, BSN, RN]

Just curious what other units policies are on taking extensive measures to keep children deemed "not compatible with life" alive.

Example: took care of a 6wk old today post op tetrology of fallot repair - he had trisomy 13, granted it was pretty amazing that he had lived as long as he had what saddened me was that he had been at home on hospice care, his family completely understanding his diagnosis but he began having increased tet spells and surgery was offered. I'm torn as to whether this was an appropriate decision. Of course it typically comes down to what the family wants anyways.

Just a mini-vent...it was a crappy day throughout the unit, one little gal I cared a lot for who had a very rocky cardiac post op course was getting ready to go to the floor when she started seizing for no obvious reason...now with total brain devastation, and then this little guy who is now potentially living out the rest of his lifespan sedated in an ICU instead of at home in his families arms

[NotReady4PrimeTime, RN]

Been there and seen that. Some families will choose to do anything and everything to buy time for their child, no matter what the quality of life the child experiences. If there can be a partnership developed between the parents and the health care staff, this can be a great opportunity to provide the family with the time they want while supporting them through their child's eventual death. Palliative care services must be provided but in a sensitive and supportive manner so that the more negative connotations (The Death Doctors) are not foremost in the parents' minds. If it can be presented to them as a means to give the child the best possible life while they're here, with pain minimized and with the parents and siblings encouraged to participate fully in the child's care, the outcome is quite rewarding.

Our unit has seen a number of children with conditions incompatible with long-term survival whose families have chosen this partnership option and when the child has eventually died, they've all said that they wouldn't change a thing. Other families have been less receptive and aggressive; those outcomes weren't pleasant and the families had regrets.

The family in your scenario may feel comfortable taking this boy home once he's more stable, with the knowledge that the Tet repair he had will not likely prolong his time with them much, but will alleviate his distressing and frightening Tet spells. No matter what, it's a difficult situation for everyone.

[suanna]

I don't work NICU but I can understand the families wishes to do anything to delay the inevitable. If the child isn't suffering pain- sedated and vented- all you may be doing is giving the family time they need to grieve. The alternative may me a family spending a very long time with overwhelming guilt that they didn't "have them do everything that they could". The internet is full of ancidotal reports of erronious lab results, miraculous recoveries, wrong diagnosis, people in comas waking up after XX years....They, I'm sure are written to inspire hope. What they do is drive a stake through the heart of every person who was faced with the decision to go all out with a hopeless surgery or let a loved one go. As far as I'm concerned it is the fault of a gutless attending who even offered this option to the family. We/they are the educated professionals. If there is no hope of a positive outcome it is just cruel to offer these kinds of interventions to a family. Thankfully is is usually only a short term reprieve from the evevitable. It is a rare case in adults or children when a person who is trying to die is thwarted for any length of time by modern medicine. People scream " I had to do everything to avoid being sued", but I wonder how often that really is the outcome when the standard of care would dictate not to perform the intervention?

[umcRN, BSN, RN]

:yelclap:

Thank you! Really great replies from you both covering all the areas of a discussion that will never end, and I know unless I am placed in such a situation I cannot ever say what I would do but it still causes a whole mix of emotions when it does happen