Study to explore ethical challenges health professionals face while caring for children w...(mer President Jimmy Carter on an essay b...),Health

Date:1/7/2009

mer President Jimmy Carter on an essay book, Just Peace. (http://www.mattieonline.com/) Mattie died in 2004 just before his fourteenth birthday. According to Dr. Rushton, "Mattie's legacy for a better world for all children has inspired our work to improve the lives of children, like Mattie, who live with LTNMDs."

Geller and Rushton's earlier research, also funded by the Stavros Niarchos Foundation, revealed that many parents of children living with LTNMD often do not take advantage of Advanced Care Planning (ACP) as early as experts recommend. "Because the life expectancy of LTNMDs is uncertain and unpredictable," Drs. Geller and Rushton claim that "ACP, and palliative care more broadly, should not be restricted solely to children who are considered close to death."

Geller and Rushton's newest Greenwall Foundation funded study will focus on the attitudes and behaviors of health professionals who care for patients living with Duchnne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA Type 1), the two most common pediatric LTNMDs worldwide. "Although both diseases are life threatening," says Dr. Geller, "each has a unique life expectancy and disease trajectory thereby creating distinct ethical challenges for the children, their families and the health care team." Dr. Rushton says, "based on a review of the literature and our own prior work, there is a need to more fully understand the nature, prevalence, and consequences of ethical challenges experienced by Neuromuscular Disease specialists who care for these children, adolescents and their families." These findings will fill an important gap that will inform the development of targeted interventions to support patient/family centered care of children with LTNMD's and their families.

Rushton and Geller say results of the national survey of health care practitioners will be presented to a focus group of regional Muscular Dystrophy Association-clinic directors and pediatric palliativ
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Contact: Ralph Loglisci RalphL@jhu.edu 410-294-9071 Johns Hopkins Berman Institute of Bioethics Source:Eurekalert

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