Jennifer C Kesselheim1, Judith Johnson, Steven Joffe. 1. Department of Pediatric Oncology, Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115, USA. jennifer_kesselheim@dfci.harvard.edu
Abstract
OBJECTIVES: Ethics consultation is a widely endorsed mechanism for resolving conflict, facilitating communication, and easing moral distress in health care. Although ethics consultation has been well characterized in the adult setting, little is known about ethics consultation or ethics programs in pediatrics. We conducted a national survey of ethicists at freestanding children's hospitals to explore the structures and processes of their ethics-consultation services and committees and to characterize their training and professional activities. METHODS: We contacted freestanding children's hospitals from the member list of the National Association of Children's Hospitals and Related Institutions (N = 46) to identify the ethics leader at each institution. This individual was invited to complete an on-line survey instrument. The survey asked about ethicists' training to fulfill their ethics-related roles, their policies and methods for ethics consultation, and the structure and funding of their ethics committees. Thirty-three ethicists (72%) responded. RESULTS: On-the-job experience (73%) was the most frequently reported form of training; a minority of ethicists endorsed each other type of training. Although 60% of the respondents reported having a policy for ethics consultation, several elements recommended by national consensus statements were inconsistently included. In addition, respondents reported variable adherence to standard components of the consultation process, including meeting with the patient or family, following up with the clinical team, and providing a written report of the consultation. A minority of respondents reported having salary support (33%), administrative support (46%), or a budget (24%) for their work in ethics. CONCLUSIONS: Although ethics-consultation policies and practices at freestanding children's hospitals are generally well aligned with published norms, our data reveal imperfect adherence to consensus standards. Additional research is needed to determine how this practice variation, as well as the lack of salary support, budgets, and administrative assistance, affect the quality of ethics consultation at these institutions.
OBJECTIVES: Ethics consultation is a widely endorsed mechanism for resolving conflict, facilitating communication, and easing moral distress in health care. Although ethics consultation has been well characterized in the adult setting, little is known about ethics consultation or ethics programs in pediatrics. We conducted a national survey of ethicists at freestanding children's hospitals to explore the structures and processes of their ethics-consultation services and committees and to characterize their training and professional activities. METHODS: We contacted freestanding children's hospitals from the member list of the National Association of Children's Hospitals and Related Institutions (N = 46) to identify the ethics leader at each institution. This individual was invited to complete an on-line survey instrument. The survey asked about ethicists' training to fulfill their ethics-related roles, their policies and methods for ethics consultation, and the structure and funding of their ethics committees. Thirty-three ethicists (72%) responded. RESULTS: On-the-job experience (73%) was the most frequently reported form of training; a minority of ethicists endorsed each other type of training. Although 60% of the respondents reported having a policy for ethics consultation, several elements recommended by national consensus statements were inconsistently included. In addition, respondents reported variable adherence to standard components of the consultation process, including meeting with the patient or family, following up with the clinical team, and providing a written report of the consultation. A minority of respondents reported having salary support (33%), administrative support (46%), or a budget (24%) for their work in ethics. CONCLUSIONS: Although ethics-consultation policies and practices at freestanding children's hospitals are generally well aligned with published norms, our data reveal imperfect adherence to consensus standards. Additional research is needed to determine how this practice variation, as well as the lack of salary support, budgets, and administrative assistance, affect the quality of ethics consultation at these institutions.
Authors: Meredith C Winter; Danielle Novetsky Friedman; Mary S McCabe; Louis P Voigt Journal: Pediatr Blood Cancer Date: 2019-01-21 Impact factor: 3.167