Medical Ethics

CSE and the Center for Applied Ethics (CAE) are developing an NIH-supported supplemental curriculum in bioethics to be used in high school biology courses. An advisory team of ethicists, scientists, and teachers collaborated with EDC staff members to develop these instructional materials on topics of social importance in the life sciences. Topics include enhancements in sports, vaccinations, allocation of scarce resources, clinical trials, genetic testing, and modifying the natural world.

EDC has provided support to the VA National Center for Ethics through their IntegratedEthics Initiative which focuses on ensuring that the VA’s health care practices are consistent with widely accepted ethical standards, norms, and expectations for conduct. EDC staff created the learning design and executed the development of workshop materials, print, video, and online tools to support and sustain this major organizational change program. IntegratedEthics workshops have been delivered on a regional and Veteran Integrated Service Networks level.

CAE edited and managed this international peer-reviewed journal, which was an initiative of the Robert Wood Johnson Foundation’s Last Acts Task Force on Institutional Innovation. The journal reached more than 8,000 health care providers each month and featured thematic issues that highlighted promising practices and expert commentary.

Initiated in collaboration with Children’s Hospital Boston, PERCS is an educational program for house staff, medical residents, nurses, and allied health professionals focused on improving communication and relationship-building skills with children and families. The one-day workshop includes interviewing of simulated patients, video feedback, personal and professional debriefing, and didactic presentations in pediatric palliative care and communication principles. This workshop continues to be offered on a monthly basis, and has been attended by over 150 practitioners.

The National Institute of Child Health and Development is launching a landmark study that will approach 400,000 women to seek their interest in participating in the National Children’s Study (NCS). Ultimately, the NCS hopes that 100,000 women and their children will be enrolled and followed until the children are 21 years of age. EDC is ensuring that women understand the roles, obligations, risks, and benefits of participation by building an innovative, interactive electronic tool.

The identification of a genetic disorder or risk raises the question of risk for family members and with it concerns about rights and obligations in regard to disclosure of genetic risk information. This project uses a vignette survey method administered to health care providers (general internists, nurse practitioners, genetic counselors) and health care consumers (naive consumers and consumers experienced with a genetic disorder in their family) to examine: What are the expectations of both patients and health care providers in regard to sharing medical information?

This project organizes retreats that explore ways to integrate pediatric palliative care education into health care settings. Building on the “Family as Educators” component of EDC’s Initiative for Pediatric Palliative Care (IPPC) program, bereaved parents and parents whose children are faced with chronic health conditions participate in the retreats as co-teachers and co-learners alongside the health care professionals.

CAE and EDC’s Center for Science Education are developing a supplemental curriculum in bioethics to be used in high school biology courses. An advisory team of ethicists, scientists, and teachers are working with EDC staff members to develop instructional materials on topics of social importance in the life sciences. These topics include the nature of bioethics, vaccinations, genetic testing, organ transplantation, and modifications of the natural world.

Gems of Care (GOC) is a national program dedicated to improving the continuity and coordination of health care and social services for children with life-threatening conditions and their families. GOC will achieve improved integration of services by facilitating networking and dissemination of expertise between hospitals and community-based organizations, both within identified geographical regions and throughout the country.

Working in the pediatric intensive care units (PICUs) of six geographically and demographically diverse children´s hospitals, this study will examine end-of-life care through medical records and interviews with key stakeholders—the child´s parents, the child´s primary nurse, the nurse who was present at the bedside at the child´s death, the attending intensivist who directed the child´s care, and a clinician besides the physicians and the nurses who provided psychosocial support to the family (e.g., social worker, psychologist, child life specialist, or chaplain).