When children die

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    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.
    hiddencatRN likes this.
  2. 7 Comments so far...

  3. 0
    I totally understand what you are saying. When I worked PDN I took care of a 10 year-old girl with a severe neurological disorder. She was a very happy little girl but when she was sick, she was SICK as in direct admit to PICU. Even on her "good" days she was very sick. Could not talk or eat. Was mobile but severely ataxic. She had two parents that loved her and a 2 year-old brother. The parents hadn't been on vacation/done much of anything since she was born and dedicated their lives to taking care of her. When she died I was very sad but at the same time I felt relief for her and for her family.

    I think it is a very hard concept for a lot of people to grasp - accepting a death and as hard as it is, I feel a little better knowing it is sometimes the best thing for the patient. Now that I am in the adult world I take care of CMO patients but it is a similar feeling.
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    Being a PICU nurse, I have taken care of lots of chronically ill children. Some are severely disabled and their quality of life is very poor. Some of these children are placed on palliative care and pass at home or on our hospice unit. Others pass away after we have exhausted all efforts to keep them alive at the requests of the family. I know which death I see as the 'better' one, if one death can ever be better than another. I pray that if I am ever faced with that situation that I would be able to make the selfless choice in the best interests of my child. And I pray so much harder that it's a decision I never have to make.
    NCalLVN and KelRN215 like this.
  5. 0
    Ashley, Where do you work? I didn't know children's hospitals had a "hospice unit". I worked at a freestanding pediatric hospice until Christmas, is it like that? I love peds palliative care and want to do it again in the future.
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    I had two back to back SIDS codes many months ago, and both children were not revived (and were beyond help when they came in anyway). I felt sorrow for the parents and the lost promise of their lives, but having taken care of children with anoxic brain injuries who DO survive being coded.....I'm glad they did not revive. Well, glad is maybe not the right word, but I firmly believe that there are worse fates than death.
    KelRN215 likes this.
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    Our children's hospital is actually integrated with a larger adult hospital. One of the floors of our hospital is rented by a private hospice company and provides inpatient hospice care. So it's not technically part of our children's hospital, or the hospital at all, but it's al located in the same building.
  8. 1
    Quote from hiddencatRN
    I had two back to back SIDS codes many months ago, and both children were not revived (and were beyond help when they came in anyway). I felt sorrow for the parents and the lost promise of their lives, but having taken care of children with anoxic brain injuries who DO survive being coded.....I'm glad they did not revive. Well, glad is maybe not the right word, but I firmly believe that there are worse fates than death.
    I agree. Working in the hospital, I always found the most difficult cases to be those who would survive but would never be themselves again. The kid who was a normal 5 year old who developed an acute autoimmune disease which destroyed her neurological system and left her wheelchair bound, trach'd, G-tube'd and non-verbal and you knew would remain that way for the rest of her life (which could easily be a very long life) hurt my heart so much more than those who you knew wouldn't survive their disease.

    Mostly, I am relieved when families come to a place where they can let go and say "it's time to stop." I remember taking care of a child with a highly malignant brain tumor several years ago- she was undergoing all the aggressive therapies for this tumor (despite there being a very poor prognosis) and was preparing for stem cell transplant. As fate would have it, she was admitted just prior to stem cell transplant with something acute (I forget what, exactly) that prevented her from proceeding. Over the course of several days, she deteriorated to the point of having to be transferred to the ICU and put on a vent. Once she was intubated, they were able to scan her and found that she had hemorrhaged and had started to herniate. We all felt so glad that she had parents who were strong enough to say "no more." She was transferred back up to the floor, extubated and passed calmly in her parents' arms.

    I currently have a child with the same disease (a highly malignant brain tumor that has a survival rate of less than 10% when diagnosed in children under the age of 3) on my service and she is undergoing all these aggressive treatments right now... but they are absolutely destroying her. After every chemo cycle, she ends up hospitalized for a MONTH with severe neutropenia and ends up on IV antibiotics, fluids, electrolyte replacements, TPN, NG feeds, the works. She also ends up needing GCSF (a daily shot) for 5-6 weeks after every chemo. This is unlike anything I have ever seen in my 6 years in pediatric oncology and she is unlikely to survive.

    If ever faced with a situation like this, I hope that I would be strong enough to say "enough is enough" and not put my child through these kinds of things to prolong his/her life but not preserve its quality.
    hiddencatRN likes this.
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    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.
    ShantheRN and KelRN215 like this.


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