UPDATED::Heaven over hospital: Dying girl, age 5, makes a choice - CNN.com

UPDATE:: Heaven over hospital: 5-year-old Julianna Snow dies on her terms

RIP Julianna!! Condolences to family and friends.  As a sage friend has said, "this was a decision about where to end her life, not when or how."

__

One of two recent medical cases that pose a dilemma.  I honestly don't know what I would decide in a case as specific as Julianna's.  I have had to deal with the consequences of adult, palliative and hospice care - my BFF who passed at the age of 43 and my mother at age 94 being the two most recent - but never a child.  I have made my own choices for end of life treatment, but I am not a child.

My only hesitation, and I will be blunt, the garbage about heaven.  That aside, as I don't get the sense the religion indoctrination is the central focus of the parents decision making process, can a child so young understand the concept of death?

I have read and re-read numerous media stories, I still don't have a personal answer other than 'time, will give the final answer.'  

This is a very nice piece put together by Elizabeth Cohen, CNN Senior Medical Correspondent

Julianna Snow is dying of an incurable disease. She's stable at the moment, but any germ that comes her way, even just the common cold virus, could kill her. She's told her parents that the next time this happens, she wants to die at home instead of going to the hospital for treatment. 

If Julianna were an adult, there would be no debate about her case: She would get to decide when to say "enough" to medical care and be allowed to die. 

But Julianna is 5 years old. Should her parents have let her know how grave her situation is? Should they have asked her about her end-of-life wishes? And now that those wishes are known, should her parents heed them? 

,,,

Dr. Sarah Green was nervous to meet with Steve and Michelle. Just 33 years old and only four years out of her training, she was relatively new to the delicate task of talking to parents of dying children. For difficult discussions like this one, she and her colleagues usually worked in pairs, but on that October day in 2014, there had been a scheduling problem and she was on her own.

Julianna was now 4 and in her third stay in 10 months at Doernbecher Children's Hospital in Portland, Oregon, where Steve and Michelle had moved to be close to Steve's parents. 

Up until this point, the family had been action-oriented, getting Julianna fitted for a back brace to fix the scoliosis that had developed as a result of her weak muscles, arranging for braces on her ankles and feet in hopes that she might walk one day, making appointments for physical and occupational therapy. 

But none of this was helping her get better. In fact, she was getting worse. At 2, she could sit up unsupported and walk with a walker, but now, she couldn't do either. She once had nearly full use of her arms, but now couldn't even hold a small toy without help. At one point she ate food, but now her chewing and swallowing muscles were so weak, she was fed through a tube in her stomach. 

,,,

When Julianna told her parents how much she hated NT suctioning, her mother tried to make her understand why they'd done it. "I told her that even though it was really hard in the hospital, it let her get better and come back home to us, so wasn't it worth it?" Michelle remembers. 

Julianna would never answer. That's when Michelle decided to have a conversation about heaven. 

Michelle asked Julianna, then 4 years old, if she were to get very sick again, did she want to go back for more treatments, or did she want to die at home?

Julianna's answer was loud and clear. She chose heaven over the hospital. 

Now Michelle and Steve had to decide: Would they abide by her wishes? 

Read part 2 here.

"This doesn't sit well with me. It makes me nervous," he says. "I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there's zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn't really develop until around age 9 or 10." 

He says Julianna's parents shouldn't put any stock in what she has to say about end-of-life decisions. Maybe she chose heaven over the hospital because she feels how much her parents hate to see her suffer; young children often pick up cues from their parents and want to please them, he says. 

Caplan, before he started the bioethics program at New York University a few years ago, worked at the University of Pennsylvania and consulted on end-of-life cases at Children's Hospital of Philadelphia with Dr. Chris Feudtner, a pediatrician and ethicist there. Caplan respects him a great deal. 

Feudtner, it turns out, disagrees with Caplan about Julianna. 

"To say her experience is irrelevant doesn't make any sense," he says. "She knows more than anyone what it's like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna."

Heaven over hospital: Dying girl, age 5, makes a choice - CNN.com