Monday, January 17, 2005
In late December 2004, the Baltimore Sun ran a series of articles entitled, "If I Die" (free registration required). The articles chronicles the dying of 12-year-old "R.J." It also provides information on the Initiative for Pediatric Palliative Care and its resources for patients, families, and health care professionals. Overall, this is the type of public education from which many families would gain a lot of strength and insight, though the transitory nature of newspaper articles probably make them not the most effective forum.
Here's the Sun's precis of the series installments:
In preparing these articles, The Sun relied on medical records, R.J.'s personal journals and interviews with family, friends, physicians, teachers and others.
The Sun received permission from R.J., his mother, Michele Voigt, and the Johns Hopkins Children's Center to be present during the last four weeks of R.J.'s life, except, at his mother's request, his death.
Most of the events described in this series were witnessed by the reporter and photographer. In addition, 15 families who have lost children, as well as more than 70 health care professionals, were interviewed.The most difficult journey
R.J. Voigt was dying. His doctors knew it. His mother knew it. Even the 12-year-old knew it somewhere deep inside himself. But medicine allows parents and children to hold on to hope for a cure. (Dec 19, 2004)
Buying time at a heavy price
Treatment gives R.J. Voigt an additional year of life -- and intense pain. Across the country, children and those who care for them struggle with hard choices as death nears. (Dec 20, 2004)
Learning how to say goodbye
As R.J. Voigt confronts his impending death, so must his mother. For the families of terminally ill children, there are no guidelines for letting go. (Dec 21, 2004)
Living on, with heartbreak
When a parent says goodbye to a child, another journey begins. Organized medicine is seeking ways to help deal with the anguish. (Dec 22, 2004)
Excerpts from the journal of R.J. Voigt
12/16/2001 (Dec 19, 2004)
Links, phone numbers and books for those who have loved ones who are terminally ill. (Dec 19, 2004)
The Initiative for Pediatric Palliative Care (IPPC) Resources
Spearheaded by the Education Development Center in Newton, Massachusetts, IPPC is a national consortium aimed at enhancing culturally respectful, family-centered care of children living with life-threatening conditions. After five years of research and development, IPPC has produced more than 25 hours of instructional material as well as QI tools. In 2005, IPPC will be scheduling a series of innovative educational retreats throughout North America in which health care professionals and bereaved family members join together to address critical issues in pediatric palliative care. For detailed information about the project, its curriculum and the planned retreats, visit www.ippcweb.org or call 617-618-2822. (Dec 20, 2004)
Pediatric Palliative Care Q&A
Questions answered by health care professionals of Harriet Lane Compassionate Care