Grow Brave Through Reflection: Moral Distress in PICU (Part I) - page 2
There has been a lot written in recent years about moral distress in health care. With the rapid pace of technological change it has become commonplace for patients to survive injuries and illnesses... Read More
Jun 20, '11There is often moral distress in PEDS as well as NICU. I knew I couldn't do PICU the day I saw a child the same age as my own. I do not know how PICU handles the family dynamics and the traumatic injuries/accidents. I have been on both sides of the NICU as a parent twice. I know our heroic, extreme measures turn into the PICU chronic kids. It starts off with NICU and the neo's not representing the true picture of a case. The only way I could do NICU is knowing that I will never know (as deeply) how these kids turn out. That cute 23.4 wk baby that weighs 420 grams, bil Grade 4, PVL, etc. isn't going to be that easy to manage at 5 years old. And the parents keep thinking their child will be a miracle. I DO NOT enjoy doing extra labs on kids that prob won't make it my whole shift. What difference does it make?
Jun 22, '11I've been on the parent side of this subject with a child born with multiple anomalies (Trisomy 13). My husband and I could NOT see forcing the child through many surgeries & procedures that would still result in a poor quality of life. It would be selfish. I've seen many children that were put through hell only to result in a child that still couldn't breathe on their own, or even crawl. As a nurse, I have a lot of sympathy for the child but find it hard to have sympathy for the parent.
Jun 22, '11Unfortunately the capabilities that we have also create choices that there once were not. A mother cannot bear to see her child tormented, but the thought of losing that child forever... well it is basically unbearable.
There are no easy answers and none of us can judge how we would feel unless we are in their shoes. I have a friend whose daughter is severely disabled. To the point where she has nurses most of the time. A vent, a g-tube. In and out of the hospital. Someone said it would be a blessing if she would die. For whom? Her parents love her fiercely. I look at my son and think if it were me would I be able to let go and think of it as a blessing? No. My son. I would throw myself in front of a train for him. Of course I would keep grasping at straws. Life is life, no matter what form.
I can see how it must torment the nurses, to know there is no real hope. But to them it is one child of many. One patient. To the parent it is THEIR child. I am sure letting go takes a long time. Reminds me of a movie line- "the heart dies a slow death".
I love caring for kids, but sick kids? It tears me up. I could not be a PICU nurse.
Mar 13, '12Late to the party but I just found this and wanted to thank you for writing it. I am a new grad working in ICU Stepdown. My oldest son died in PICU five years ago after being on a vent for two weeks and oscillator for an additional two. We made the agonizing decision to discontinue treatment - he had relapsed AML and had gotten CMV pneumonia about 90 days after allo BMT. He was 11 when diagnosed with AML, 13 when he died.
When I think on these issues I get very conflicted. I HAVE been there and I know the agony the parents are in. I understand the feeling that discontinuing drastic measures feels like giving up on the chance of a miracle. And sadly, it is the one in a billion miracle that makes the evening news. I still feel waves of guilt when I see one. Did I give up too soon? I get very defensive when I see posts like the above referencing putting oneself in the path of a train for their child. It seems to imply that I was not willing to because I accepted he wasn't going to get better. I quietly say that accepting the course we were on was nothing but torture for my child and being willing to take my own lifetime of pain in return for releasing him from his - THAT is putting oneself in the path of the train for your child. I get hit by that train every day. People do not realize that every time someone implies they could never go through that because they love their child too much implies that those of us who reached a point of agonized acceptance and made the difficult choices didn't love our children as much, proven because we consented to stopping treatment.
It was obvious to me for weeks before Joseph died that he was going to die, but would any of the providers actually discuss that with us? No. They were the last ones to "give up"...or perhaps just slow to get the courage to say it to us, even though the discussion was invited by us prior to his ever being put on the vent.
As I gain more experience in the medical world I see clearly there is a definite communication issue where people don't want to hear what they don't want to hear and providers don't want to say what they don't want to hear. It is a twofold problem - both that of the parents being unwilling to give up or unable to live with the guilt of the very thought, let alone the lifetime of guilt that lingers afterward...but also the providers who are unskilled and unprepared to have these discussions and perhaps even a little guilt-ridden themselves. I believe whole-heartedly they want their patients to live and that it is hard on them to be unable to save them. Combine their internal conflict with the desperate eyes of the family, it is no wonder they cannot be completely honest. Training for successful communication in these situations is imperative. Yes, there will always be families who cannot bear to let go. But, like me, there will also be families desperately searching for the truth and permission to accept what they already know in their hearts...that the current actions are not going to work, that what is happening is torture for the child and that perhaps it is time to say goodbye. Those families need absolution and it starts with the medical team.Last edit by not.done.yet on Mar 13, '12
Mar 13, '12For what it's worth, I think that parents who "would never" truly believe their actions are out of love for their child, but really they're looking at their own needs first. You don't even have to read between the lines to see that. It's a much more loving and compassionate act to say, "No more". I feel your pain, not.done.yet. I think you'll find that as time passes and you gain more experience in PICU as a professional your ifs, buts and maybes will diminish and you'll find peace with the choices you and your spouse made. Until then, know that I admire your courage.
Your comments about communication are spot-on. I see it time and time again... we KNOW the child isn't going to get better, that they're suffering despite our best efforts and that it would be the moral thing to say that we know. The ridiculous hierarchy that dictates nurses do not initiate or engage in these conversations makes it so much worse. I know there are many opportunities to at least get the family thinking about how far they want to go with heroic measures. But we can't take them. That's a shame. I also don't think it's fair, right or moral that "we" leave the decisions purely to the families. I'm eternally grateful that there are some physicians at my hospital who will simply say, "I'm terribly sorry but anything we do now will not save your child and will most likely only cause more pain and suffering, or perhaps hasten his death. As a physician, I'm not prepared to add to your child's suffering. I wish things were different."
Being alive is not the same as living.