'Heaven Or Hospital?' Parents Allow Child To Make End-Of-Life Choice

[still_one]

Should a dying child have the right to decide between "heaven or the hospital?

An Oregon family’s decision to respect the end-of-life choice of their 5-year-old daughter has sparked a heated debate about this difficult question.

Juliana Snow has suffered from an incurable neurodegenerative illness called Charcot-Marie-Tooth disease, or CMT, since birth. The child can’t move or eat, wears a breathing mask at all times, and is confined to the four walls of her family’s Portland home.

According to her doctors, Juliana’s CMT has progressed to such a critical stage that even a minor cold could now kill her.

"For her, there is no light at the end of the tunnel," Dr. Danny Hsia, Juliana’s pulmonologist, told CNN. "She doesn't have a long time to live."

Watching their daughter suffer from this debilitating illness and understanding the inevitability of her early death, Juliana’s parents, who are Christians, have had to ask themselves a painful question: The next time their daughter gets sick, what will they do? They could either bring her to the hospital, where there’s a small chance her life could be saved, or she could remain at home -- where she would almost certainly die.

http://www.huffingtonpost.com/entry/juliana-snow-heaven-hospital_563049a0e4b0c66bae5a2989

[Kalidurga]

1. I think it is better she stay with her family as long as she can.

There is no reason to add hospital drama to her last moments with them. This is tragic and sad. No family should have to go through it and no one should have to justify their choice even if they are giving their child a false one at least it comforts her.

[PatrickforO]

2. We are far more humane to our pets than we are to the people we love.

If she were the family dog, her suffering would have ceased long ago.

Keeping her at home is probably the best bet. Keep taking her to the hospital and she'll keep suffering. "For her, there is no light at the end of the tunnel."

[get the red out]

4. Exactly

There is no good that comes from making this child suffer more.

[Hekate]

3. Children know when they have suffered enough. They know when it's hopeless.

I fully support letting the Julianas of this country having a say in their own end of life treatment.

[mucifer]

5. This is more common than you think.

There actually are workbooks where the child can express his or her wishes about end of life.

Many parents allow the child to be involved in the decision.

This is the booklet we sometimes use available in English and Spanish:

?sfvrsn=0
https://agingwithdignity.org/shop/product-details/pediatric-my-wishes

I am a pediatric hospice nurse.

[OneGrassRoot]

8. Oh my...

I am so grateful for people like you. YOU and your colleagues are our heroes.



Very interesting about the booklet; that's brilliant and wonderful to respect the child's wishes in this way. Thanks for sharing.

And more for you.

[ladyVet]

6. What a horrible thing to have to face.

I think they did the right thing. She should have a say in what happens in her life, under these circumstances. There's truly no hope, so make her as comfortable as possible. This isn't like any parents refusing medical help for religious reasons.

[Vinca]

7. Under the grim circumstances, probably the right choice. Poor kid.

[CTyankee]

9. My neighbor had a pregnancy that ended abruptly and delivered a baby that was too

damaged (and too premature) to live. She was at Yale New Haven hospital for two months and finally was let go by her deeply religious parents. They did fundraising to create a space in the hospital for parents to wait with their infant for the inevitable. Otherwise, as they pointed out, they would be waiting in a room that was noisy and busy. It was a sad time. She was and is a health and science reporter for our local ABC affiliate and she did a segment on the space. It was so sad when the little baby girl passed away. The viewers were so upset, including me. It was a personal tragedy that they handled with sensitivity and caring and the viewers were appreciative of their efforts. They had another baby, a girl, who was healthy and fine.

[hamsterjill]

10. What a great love!

I cannot even imagine the pain and anguish that these parents have endured, nor can I imagine the suffering that this poor little child has endured. Whatever their decision, it is theirs to make in my opinion. How could anyone else (individual and/or governmental agency) DARE to believe he/she/it could have a better understanding of this situation than these parents?

I believe they love their daughter very much and it is a brave and generous act that they are putting the reality of her situation above all else.

Kind passing, Sweet Juliana, and comfort and peace to your parents.