Project Director and Principal Investigator:

Myra Bluebond-Langner, Distinguished Professor of Anthropology and Director and Founder of the Center for Children and Childhood Studies (2000-2004), Rutgers University

Co-Investigators / Consultants:

Jean Belasco, MD, Clinical Associate Professor of Pediatrics, Division of Oncology, Children’s Hospital of Philadelphia, and Ann Goldman, MD, Director of Supportive Care Team and Chair of the Department of Hematology and Oncology, Great Ormond Street Hospital for Children

Background

In the developed world, one third of all children with malignant disease die. For a vast majority of these children, the recognition that cure will not occur comes after a long period of aggressive therapy. Their parents, physicians, and in some cases the children themselves, are then faced with an agonizing decision in which they must weigh the possible outcomes of further treatment against the costs – in all dimensions: physical, emotional, social and even economic. Their decisions go beyond calculation of risk and benefit. Their decisions also depend upon cultural values and meanings. In order to grasp, for example, how doctors or parents balance their responsibility to protect the children from harm, we must know the meaning of what it is to be a physician, parent and a child. In fact, a complete understanding of the decision making process in all of its aspects – from the way in which parents and patients acquire and use information in choosing a course of treatment to the ways in which they construct the notion of a meaningful life for their children – must rely upon a consideration of social and cultural factors.

To date there have been no in-depth, prospective studies of decision making for children with life-threatening and life-shortening illnesses which have incorporated the perspectives of all participants over time, and which have viewed decision making as a social act involving the particulars of the illness, the medical setting as well as the core values and beliefs each participant brings to that experience and setting. The need for such a study is underscored in an article in the Journal of the American Medical Association (Wolfe et al 2000: 2469-2485). The article points out that prospective studies such as ours are essential for the development of better guidelines for the care and treatment of children with cancer and other life threatening illnesses. Moreover, the law requires parental consent to treatment and when that treatment is part of a research protocol – a common occurrence in childhood cancer – the assent of the child as well. Professional bodies, among them the American Academy of Pediatrics, the Royal College of Paediatrics and Child Health, and the Society for Adolescent Medicine, have called for increased involvement of parents and children in decision-making. A better understanding of how parents, physicians and children choose among alternatives, what roles they would like to play, and how best to involve them, is sorely needed. Decision Making for Children When Cure is Not Likely addresses that need.

The foundation of this project is an ethnographic, participant-observation study of the children/patients, parents, and clinicians at two tertiary care hospitals – Children’s Hospital of Philadelphia (CHOP) in the United States and Great Ormond Street Hospital for Children (GOS) in London, England. The bi-national nature of this study will aid in distinguishing the influence of scientific and technological factors from social ones. Both the USA and England have similar standards and levels of care. Each has comparable access to technology and new discoveries in medical research. There are, however, differences in values and ideology as well as in the mechanisms by which care and treatment are funded. By comparing the USA and England we can better understand what role, if any, these differences play in decision making.

Significance and Anticipated Outcomes

• Provide the first in-depth, systematic, prospective account of decision making for ill children that includes the perspectives of all the stakeholders (clinicians, parents, patients, institutions).
• Disseminate results of the study through a book-length monograph.
• Develop recommendations for guidelines for including parents and children in decision-making that reflects not only their desires, but also the practices and concerns of physicians and other health care professionals.
• Disseminate evidence-based recommendations for clinical care and policy through publications in journals and presentations at conferences.

Methods

• Conduct 2-year ethnographic, participant-observation study of the children, parents, and staff of the oncology department at two tertiary care hospitals in the USA and England.
• Record and transcribe verbatim formal and informal conversations (e.g. rounds, family meetings, corridor chats) among parents, patients and staff as well as interviews (covering history of the illness, knowledge of disease, treatment options, and potential outcomes).
• Analyze (with support from Atlas.ti, a qualitative data analysis program) journal entries, verbatim transcripts, behavior specimens, and other relevant information from the chart review.
• Study population: 80 children with malignant disease (40 USA, 40 England) with a less than 20-30% chance of cure at relapse (leukemias), recurrence, or progression (solid or central nervous system tumors) as well as their parents and clinicians involved in their care and treatment.

Accomplishments Through December 2004

• Completed review of the literature
• Posted bibliography on the National Hospice Organization web site.
• Recognized by the Associated Press as breaking new ground.
• Completed 15 months of fieldwork in the United States and England.
• Produced over 850 hours of audiotapes of family meetings, interviews, as well as formal and informal discussions with patients, parents and staff.
• Various aspects of the project as well as preliminary results and recommendations for involving children in the decision making process have been presented at: McGill University (October 2004); World Congress in Pediatric Hospice and Palliative Care, Edinburgh, Scotland, (September 2004); SUNY Downstate Medical School and Kings County Hospital (June, 2004); Center for Research on Children, Trinity College, Dublin (April 2004); Royal College of Paediatrics and Child Health (March 2004); Institute of Medicine, Washington, D.C. (July 2003); Yale University Institution for Social Policy Studies (May 2003); Duke University Institute on Care at the End-of-Life, Durham, NC (May 2003); University of Chicago (April 2003); MacLean Center for Clinical Bioethics, Chicago, Illinois (April 2003); National Meetings of Children’s Oncology Group, Atlanta, Georgia (March 2003); and Great Ormond Street Hospital for Children (January 2003)
• “Involving Children With Life Shortening Illnesses In the Decisions About Participation in Clinical Practice: A Proposal for Shuttle Diplomacy and Negotiation” In Learning from Cases: Ethics and Research in Children. Eric Kodish, editor. Oxford University Press. Fall 2005

Work to be Completed by December 2005

• Completed transcription of remaining tapes.
• In-depth analysis of communications among parents, children and staff.
• Draft of book-length manuscript: Choiceless Choices: Decision Making for Children with Cancer When Cure is Not Likely

Support for the Project

• Olivia Hodson Foundation (London, England)
• Johnson & Johnson Family of Companies (USA)
• National Endowment for the Humanities (USA)
• Stanley Thomas Johnson Foundation (Switzerland)
• REACH Fund of Great Ormond Street Hospital (London)
• Fannie E. Rippel Foundation (USA)

For more information, please email Dr. Bluebond-Langner