Bibliography Summary
Ethics and Decision-Making Subgroup Bibliography - Summary
This bibliography is the product of the Ethics and Decision-Making subgroup of the Children’s International Project on Palliative/Hospice Services (ChIPPS). ChIPPS is comprised of physicians, nurses, social workers, psychologists, pastoral care personnel, anthropologists, ethicists, bereavement specialists, and administrators of home health programs, committed to enhancing the science and art of pediatric hospice and palliative care. One of the group’s primary goals is to increase the availability of pediatric hospice and palliative care. The group receives funding from the Robert Wood Johnson Foundation, the Arthur Vinning Davis Foundation, Anesta, Roxane, and Purdue Fredrick. The Ethics and Decision-Making subgroup is one of five topic-specific work groups.
We chose to focus on assessing the competency and capacity of the child as a participant in decision-making at the end-of-life. This bibliography is the result of a literature search as well as a search through group members’ files. These articles have not as yet been critically evaluated. The ChIPPS Decision-Making and Ethics group is currently in the process of producing a more focused, annotated bibliography of selected articles which will allow the reader to be more discriminating in choosing articles for review, use in bedside decision-making, and research. We hope that by compiling what is known about the child’s role in decision-making, we will highlight what is unknown and thus in critical need of further research. In short, this bibliography should in no way be construed as a complete or exhaustive listing of all possible articles on the subject, nor should it be seen as a recommendation for further reading. It is offered as a good place to begin.
The bibliography is broken down into three sub-pages:
We also would like your suggestions for additions. Please send pertinent references to Myra Bluebond-Langner.
A hard copy of the paper should also be sent to:
Myra Bluebond-Langner
Rutgers University
Department of Sociology
Anthropology, and Criminal Justice
320 Armitage Hall
311 N. Camden Fifth Street
Camden, NJ 08102.
Dr. Bluebond-Langner and her research assistants were instrumental in assembling this bibliography and we wish to commend their considerable effort.
Chair: Stephen Liben, MD
Members: Myra Bluebond-Langner, Ph.D., Ann Goldman, MD., Barbara Sourkes, Ph.D., Suzanne S. Toce, MD and Lizabeth Tristan, MD
