http://media.soundmedicine.org/segments/030914_5.mp3
For most parents, nothing trumps sharing funny stories about their children, but for those who have raised children with serious illnesses, a walk down memory lane might be painful. According to Dr. Patricia Grady, making life easier for sick children and teens is possible through palliative care programs.
A recent study showed that while hospitals have in-patient palliative care programs, they lack out-patient programs.
Dr. Grady is director of the National Institute of Nursing Research--home to the Palliative Care: Conversations Matter campaign, which educates health care professionals on how and why they should suggest specialized care for sick children at earlier stages of the illness. The campaign's resources also give health care providers suggested answers to common questions about palliative care for children, as well as tips for what types of questions they can be asking parents.
Hospice care and palliative care aren't the same, as the latter is "more specialized, and focused on symptom management." This is a common misunderstanding, says Dr. Grady.
It all starts with communication.
Children often lack the ability to describe the type of pain they are experiencing; parents sometimes fear answers they don't want to hear, though they need to.
This is when palliative care providers step in.
"Starting a difficult conversation is often a challenge," Dr. Grady says of educating parents. "How it might start is: You may have noticed that Jonny's breathing seems more difficult today, and I wondered if you noticed that?"
Poor health aside, kids wants to be kids. There are certain articles of clothing and favorite toys, as well as specific activities that can help put them at ease, according to Dr. Grady.
The campaign is being tested in three locations of the country, and is attempting to raise money for palliative care resources.