Ethics Consultation in Children's Hospitals: Results From a Survey of Pediatric Clinical Ethicists

DISCUSSION

We conducted a survey of pediatric clinical ethicists working in freestanding children's hospitals to explore the structure and processes of ethics-consultation services and ethics committees at these hospitals and to learn about the background, training, administrative and fiscal supports, and allocation of professional time of pediatric clinical ethicists. Our data allowed us to draw 4 major conclusions.

First, we found that in the majority of cases, ethics consultations are conducted in a manner consistent with published standards for this clinical service.⁸ Specifically, most involve reviewing the consultation with the ethics committee, notifying the patient or family members about the consultation request, meeting with more than 1 member of the clinical team, meeting with the patient or patient's family, and providing written report of the consultation to the clinical team and the patient. In addition, when written policies are in place to guide ethics consultations, most policies include elements recommended by consensus panels.^2,8

Second, our data highlight some areas for improvement in ethics consultation. For example, 40% of the respondents reported that their institution lacks a written policy to guide ethics consultation, although having such a policy in place is a published standard.^2,8 Also, we found that patients and family members are “usually or always” included in the ethics-consultation process in only 73% of cases. Although this still represents a majority, it is surprising that this number is not higher given that involvement of the patient, family, or both in the ethics-consultation process is a recognized best practice.² Furthermore, the fact that patients and family members receive a written report of the consultation team's findings and recommendations in only 24% of cases may be incongruent with a commitment to involving patients and families in the consultation process, if patients and families are not provided with a summary of the consultation process and its conclusions by some other means.

Third, few respondents reported having received formal training to assist them in fulfilling their ethics roles. Experience on the job was most commonly identified as a source of training; fewer than half of the respondents reported learning from any other source. This observation extends findings from the adult care setting. When Fox et al¹⁰ administered a survey to clinical ethicists at US general hospitals, 41% of the respondents reported learning to perform ethics consultation under the direct supervision of an experienced ethicist, whereas 45% learned on the job without supervision at all. Only 5% of that sample received formal training in the form of an ethics fellowship or graduate-degree program. Although data showing an association between formal training and higher-quality ethics consultation are lacking, previous research also indicates that clinicians' perceptions of a lack of qualifications among ethics consultants may be a barrier to requesting an ethics consultation.⁵ This suggests that having ethicists with more formal training in ethics may better meet the needs of health care providers who require ethics consultation.

Last, respondents often lack administrative assistance, budgets to support their ethics work, and salary support explicitly designated for their ethics roles. Approximately one third of the respondents reported receiving salary for their ethics work, a proportion that compares favorably to the data of Fox et al.¹⁰ The lack of fiscal and administrative support for ethics programs raises concern about whether the freestanding children's hospitals are adequately invested in providing ethics services. Budgets dedicated to ethics would likely allow ethicists to be better trained and may increase the quality of their work.

Our study has several limitations. In assembling our study sample, we sought to identify the individual most knowledgeable in pediatric ethics at each children's hospital. However, because no reference list of hospital ethicists exists, we may not have succeeded in identifying the individual best placed to describe the ethics processes and programs at every institution. The most knowledgeable individual may not be the one most intimately involved in the consultation service within a given hospital. In addition, the survey relied on ethicists' self-reports and, therefore, is subject to recall, social-desirability, and other biases. Moreover, although the survey asked respondents to focus on their work at their children's hospitals, it is possible that some ethicists also worked in general hospital settings and that their experiences in those settings influenced their responses. Our questionnaire did not ask the ethicists about the extent of their training, either clinical or ethical, or their current practice that is devoted to the pediatric setting. Finally, some of the published standards regarding best practices for ethics consultation are now 8 to 11 years old and may no longer fully reflect the realities of today's health care setting. As consensus statements and practice guidelines for ethics consultation inevitably evolve, the conclusions to be drawn from our data may shift as well.

Nonetheless, our study allowed us to draw important conclusions about pediatric ethicists and ethics services at freestanding children's hospitals. Despite a lack of salary support, budgets, and administrative assistance, ethics-consultation work at these institutions is, in most cases, well aligned with published expectations and standards. At the same time, we identified some areas for improvement, such as making written policies and practices for ethics consultation more uniform and increasing the rigor of training for clinical ethicists. Although ethicists themselves may need to take a lead role in addressing the former, the latter may be the purview of the children's hospitals, which in many cases do not provide the ethicists and ethics services with dedicated resources that could be used for training purposes.