Department of Pediatric Oncology, Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115, USA.
Pediatrics. 2010 Apr;125(4):742-6. doi: 10.1542/peds.2009-1813. Epub 2010 Mar 1.
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.
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.
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.
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.
伦理咨询是一种广泛认可的机制，可用于解决冲突、促进沟通和减轻医疗保健中的道德困境。尽管成人环境中的伦理咨询已经得到了很好的描述，但关于儿科的伦理咨询或伦理计划知之甚少。我们对独立儿童医院的伦理学家进行了一项全国性调查，以探讨他们的伦理咨询服务和委员会的结构和流程，并描述他们的培训和专业活动。
我们联系了国家儿童医院和相关机构协会（N = 46）成员名单中的独立儿童医院，以确定每个机构的伦理负责人。该负责人被邀请完成在线调查工具。该调查询问了伦理学家履行其伦理相关角色的培训情况、他们的伦理咨询政策和方法，以及他们的伦理委员会的结构和资金情况。33 名伦理学家（72%）做出了回应。
在职经验（73%）是报告最多的培训形式；少数伦理学家认可其他类型的培训。尽管 60%的受访者报告有伦理咨询政策，但国家共识声明推荐的几个要素并未得到一致包含。此外，受访者报告对咨询过程的标准组成部分的遵守情况各不相同，包括与患者或家属会面、与临床团队跟进以及提供咨询的书面报告。少数受访者报告有薪酬支持（33%）、行政支持（46%）或预算（24%）用于他们的伦理工作。
尽管独立儿童医院的伦理咨询政策和实践通常与已发表的规范一致，但我们的数据显示，对共识标准的遵守并不完美。需要进一步研究，以确定这种实践差异以及缺乏薪酬支持、预算和行政援助如何影响这些机构的伦理咨询质量。
