Breaking Down Barriers to End-of-Life Care fo...(removing mechanical ventilation while th...),Health

Most of those parents responding were mothers, and three-quarters were married, with an average age of 42. Nine percent said they had no religious affiliation, 50 percent were Catholic, 34 percent were Protestant, 5 percent were Jewish, and 2 percent were Muslim, according to the study.

The areas identified by these parents as needing improvement included:

• The need for honest and complete information from care-givers. The parents didn't want doctors and nurses to keep information from them to protect them. "What we cannot handle is not knowing what is going on," one parent wrote.
• Coordination of care and communication. Rather than having every doctor caring for a child present their opinion to parents -- which sometimes differs with other doctors' opinions -- perhaps one doctor should provide a consensus opinion.
• Easier access. Parents said they could easily miss doctors on rounds, even if they just stepped out for coffee. Having a regularly scheduled meeting time would be helpful for parents.
• Respect for the parent-child relationship. Parents wanted to be acknowledged as a vital part of the decision-making process.

Moody said that what's most important for the child is symptom and pain management. "If we could at least eradicate pain at the end of life, we would be making a big step forward," she said.

For the parents, Moody added, "I'm not convinced there's ever enough support. This is such a painful experience. And, communities don't know how to address people who've lost a child. People don't know what to say, so you see an avoidance. It becomes such an isolating experience."

To ensure that health-care professionals don't keep families of dying children at a distance, Moody said they n
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