Comments about ‘BYU nurses identify problems in caring for terminally ill children’

What do BYU nurses know about health care? Obama has ALL the answers!

In my home country we have to learn how to speak english at a young age. That way we can communicate more effectively. Americans should be required to learn spanish. Then they can solve these language issues.

Yes Ruiz, every country whose major export is its' people should teach "how to speak english at a young age. That way we can communicate more effectively... Then they can solve these language issues."

Isn't it bad enough that we have to pay for the health care of those who come here illegally. Now you're suggesting that WE be "required to learn" their language in order to make it easier on THEM? That's a good one!

It's really good that they have this study. As the frustrated Mom of a child that died at 5 from congenital heart defects, I wish some of the things they mentioned would have been done. No one ever asked us our to give the o.k. as they put him through horrific tests and procedures, poked him and put him through 15 surgeries (most open heart, the first when his heart was the size of a walnut). We were bankrupted by all this over the top medical. My child would scream when the medical people would come near him, he knew it meant pain. He was on oxygen, feed tubes all his life. They only gave him that orange Motrin for pain and I wonder if that was enough, can you see adults with Motrin for open heart surgery? An adult would freak! I wish we could have been offered palliative care instead of unrealistic, crazy surgeries that only made things worse until he died. He only knew pain. I ache about it even now. Why such intense interventions of a child who was going to die? His life cost millions in care.

Grieving mom, I am sorry for your loss. My son has a heart defect too and has had open heart surgery. My experience has been one of open communication between our family and the medical staff. I really felt like I was part of the medical team and played a roll in his coarse of treatment. I am sorry this wasn't your experience.

I have seen many other heart families given options for treatment and surgical procedures. I know families that have opted for comfort care (no surgical intervention) and others who have fought to have additional procedures to help their child.

I would hope that this study and others show the importance of communication between doctors and parents. There is so much stress on the families of ill children both emotionally and financially. Good ICU nurses made all the difference in helping us cope with our sons condition and recovery.

Heart and Grieving Mom: Thank you so much for your most important comments. You are both the reason this research is so important. My heart goes out to you both. Pediatric palliative care is still in it's infancy. In Utah, PCMC is way ahead of the game, we are very fortunate. It is so important to share so we can learn from and build upon previous experiences and hopefully influence the future. When it comes to children, end-of-life care is very emotionally charged and has unique barriers. It is hard to understand, people need to feel all has been done, and children deserve to have a peaceful, dignified death. I hope that you mothers will feel peace and support. You deserve nothing less.