Pediatric Palliative... what?

The recent summer issue of Quest, a research and health magazine published by the Muscular Dystrophy Association, includes an excellent article about pediatric palliative care*.

Even though the publication is written for individuals with neuromuscular or muscle diseases, the article includes some wonderful points about pediatric palliative care.  These points about pediatric palliative care are helpful for all children with life-limiting or life-threatening conditions and their families, as well as their doctors or care team:

• Palliative care for children means more than ‘end-of-life’ care.  The holistic approach to care “begins when a child receives a diagnosis, and continues throughout the child’s life, regardless of any treatment received.”
• Pediatric palliative care seeks to address not only the child’s comfort and quality of life, but also medical communication, decision making, access to resources, and the family’s emotional needs.
• Pediatric palliative care programs for children say “nothing about when, or even whether, the child will die.”  These programs provide support services that are part of the child’s overall care throughout the child’s life, beginning early on before the family reaches a crisis issue.
• Goals for a pediatric palliative care program are parallel with the family’s goals of seeking treatments or cures; pediatric palliative care services provide the family with social support and education while they are still “hoping and fighting, and seeking a cure.”
• Pediatric palliative care services help families address many difficult questions and conversations that may come up during their child’s care
• Pediatric palliative care services include

-       Managing pain and other symptoms

-       Addressing quality-of-life issues

-       Addressing the emotional, social and spiritual needs of the family

-       Educating adolescents about their condition, prognosis and treatment

-       Incorporating palliative care professionals into a child’s health care team

Pediatric palliative care initiatives, such as the project highlighted in the article, are developing throughout the country.  One of the doctors quoted in the article, Brian Tseng, said, “This isn’t something we’re taught in school, and it’s not experienced in practice unless you happen to spend time with people who are passionate about it.”

You can count on this:  Ryan House is passionate about pediatric palliative care and we look forward to welcoming children and their families in 2010!

*  Labbe, Amy (2009). The International Heartsongs Project:  Focusing on quality of life. Quest, 3, 55-57. 

The article is available online at: http://www.mda.org/publications/Quest/q163heartsongs.html