I know this has been discussed on this board before but I just want to share something that I think only pediatric nurses can understand.
One of my patients died today. She was a 12 year old who was diagnosed with cancer last spring- cancer which was metastatic at diagnosis, refractory and progressive despite multiple treatment protocols. I first met her last August after she was first discharged from the hospital after a prolonged stay. She was happy, talkative and ambulatory. She was then off my service for about 4 months and re-referred when she began a Phase I clinical trial and needed labs checked at home. She only needed labs at home a couple times because she had a scan that showed rapidly progressing cancer and was kicked off the clinical trial. The last I heard about her before today, the doctors were debating whether to offer the family another Phase I trial or to pursue comfort measures only.
This afternoon the Case Manager called to tell me that she'd died in the hospital and that the family had agreed to the DNR just in time. I know that the normal reaction would be to feel upset or sad when a child dies but I feel neither. I saw this child deteriorate before my very eyes and knew that she no longer had any quality of life. I feel sad for her family but I also feel happy for her- that she is now free of this disease which robbed her of so much and relief that her family came to a place where they could let go instead of subjecting her to more clinical trials that were unlikely to change her outcome.
Feb 25, '13
by NotReady4PrimeTime, RN Senior Moderator
I've always had the deepest respect and admiration for those parents who choose to stop before the Big Event renders the choice basically moot. To me that's the most compassionate and selfless gift parents can give to their children. 20-some years ago (a few years before I became a nurse) when my son was in the ICU in MODS I made the toughest choice I'll ever have to make, and that was to decide when enough would be enough for him. His acute renal failure was his most critical issue and dialysis wasn't an option for him. The hospital where he was admitted didn't have the capacity for dialysis on children and he was too sick to transfer to a hospital that did. So we discussed it and decided that if his BUN or his creatinine went above certain limits, we would stop. Stop his fluids, stop his pressors, stop his antibiotics, extubate and let nature take its course. His labs peaked just barely below our threshold and on April Fool's Day he started peeing. He survived and is in good health today, but it could so easily have gone the other way. And I would still do everything exactly the same.
Last edit by NotReady4PrimeTime on Aug 25, '16
: Reason: formatting