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.
WHAT'S KNOWN ON THIS SUBJECT:
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.
WHAT THIS STUDY ADDS:
We used a survey of clinical ethicists at freestanding children's hospitals to explore the structures and processes of their ethics-consultation services and committees and to characterize pediatric ethicists' training and professional activities.
Ethics consultation, although a relatively new health care service, has been endorsed by myriad medical professional groups and high-level policy makers as a mechanism for resolving conflict and facilitating communication in the health care setting.1,–,4 In addition, ethics consultation has evolved into a clinical service on which health care providers and patients depend as an avenue for ameliorating moral distress that arises in the care of patients.5,–,8 Data indicate a high degree of satisfaction with ethics consultation among pediatric health care providers.9 Although the methods for ethics consultation have been well characterized in the adult clinical setting,8,10,11 little is known about how ethics consultations are conducted in freestanding children's hospitals and whether the consultative process in the pediatric setting adheres to published standards.2,8,12 Moreover, although several groups, including the American Academy of Pediatrics,2 have articulated standards for the composition and function of ethics committees, data are lacking regarding whether these standards are met. There is also limited understanding of the background, training, and professional role of clinical ethicists and the resources (both human and fiscal) dedicated to ethics programs in the pediatric setting.
To fill in these empirical gaps, we conducted a survey of pediatric clinical ethicists at the nation's freestanding children's hospitals, as defined by the National Association of Children's Hospitals and Related Institutions.13 We sought to systematically explore the structures and processes of ethics-consultation services and committees at these hospitals and to characterize the background, training, and professional activities of pediatric clinical ethicists.
We contacted freestanding children's hospitals (N = 46), as identified from the membership list of the National Association of Children's Hospitals and Related Institutions, by telephone or e-mail to identify the individual at each institution who was most knowledgeable about pediatric ethics. One eligible individual from each freestanding children's hospital was invited by e-mail to complete an on-line survey instrument.
The survey instrument consisted of 23 questions grouped into multiple domains. Questions used either multiple-choice or ordinal response formats. Ethicists were first asked whether their consultation service has a written policy or procedure regarding how to conduct a consult, what is contained in that policy, and their methods for conducting an ethics consultation.2 The next sections of the survey contained items about the structure, function, and funding of the ethics service and the ethics committee at the respondent's hospital. Finally, respondents were asked about their background and training for their ethics-related roles.
Before conducting the main survey, we pilot-tested the instrument with 6 experts in pediatric clinical ethics who did not work at freestanding children's hospitals and were, therefore, ineligible for study participation. Pilot participants were interviewed by an investigator (Dr Kesselheim) about the clarity of the questions and the ease of responding, and the instrument was revised to address identified concerns.
We conducted the first study mailing in May 2007. Our initial packet included a $5 Starbucks gift card and an introductory letter that informed the ethicists about our study and notified them that they would receive an electronic survey from us within the week. The survey was sent via e-mail 1 week later, with a reminder e-mail to nonresponders 7 business days later. Embedded within these e-mails was an electronic link to the survey instrument (Illume [DatStat, Inc, Seattle, WA]). Responses were received from 33 of the 46 ethicists (response rate: 72%).
The study was approved by the institutional review board at the Dana-Farber Cancer Institute, which waived the requirement for documentation of informed consent.
Analyses were primarily descriptive and were conducted by using SAS 9.1 statistical software (SAS Institute, Inc, Cary, NC). We examined the frequencies of responses for all items of the survey and then explored whether hospital size was associated with study outcomes.
The median age of the respondents was 55 years (range: 35–68 years), and 58% were male (Table 1). Most (67%) were physicians, but respondents represented a diverse range of professional and academic degrees. Respondents reported spending an average of 8% of their time on clinical ethics, 6% on organizational ethics, 13% on ethics research, and 48% on patient care.
The most common type of training cited by the respondents used to fulfill their ethics roles was experience on the job (72%), followed by an intensive bioethics minicourse (39%), mentoring with an experienced ethicist (36%), and a masters degree in a relevant field (33%).
Respondents reported that an average of 5.6 individuals at their hospitals have responsibility for leading ethics consultations, and almost half reported that their services conducted 6 to 10 formal ethics consultations in the previous 12 months (Table 2). Half of the respondents reported that 2 to 4 consultants participate in each formal ethics consultation. Twenty ethicists (60%) reported having a written policy to guide the process of ethics consultation. All policies address who can request an ethics consultation, how to contact the consultation team, who will respond to a request for ethics consultation, and the advisory nature of the consult team's recommendations. Most address how the ethics consultation will be conducted, assurance of patient confidentiality, who will be included in the consultation process, how the consultation will be documented, and methods for notification of involved parties.
Ethicists were then asked about the process they use when conducting a formal ethics consultation (Table 3). In the majority of cases, the ethicists “usually” or “always” review the consultation with the ethics committee, meet with at least 1 member of the clinical team, notify the patient or family of the consult, follow-up with the team for clinical updates, and enter a written report into the medical record. Consultants less commonly provide a written report to the patient or family.
Fiscal and Administrative Resources
One quarter (24%) of the ethicists reported that their ethics service has its own budget, and 9% were unsure about whether they had a budget to support their ethics service. One third (33%) of the respondents reported receiving salary support explicitly designated for their role in ethics. Approximately half (46%) of the ethicists reported having administrative support dedicated to the ethics service; among those with support, the mean administrative effort devoted to ethics was 18%.
Ethics committees meet a median of 10 times per year. Most respondents (55%) reported that their ethics committees had more than 20 members (Table 4). Forty-two percent reported that their committee members serve terms of 36 months or more, and approximately half (49%) reported that committee members serve variable terms. Approximately half of the committees report to the hospital's medical staff executive office.
We explored the relationship between hospital size (as measured by the numbers of beds) and responses to several survey items. Responses to questions about ethics-consultation methods, whether a written policy is in place to guide ethics consultations, whether the ethicist has a budget, salary support, or administrative support, or the training the ethicist has received to fulfill his or her ethics role demonstrated no statistically significant association with the size of the responding ethicist's hospital.
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.
- Accepted November 11, 2009.
- Address correspondence to Jennifer C. Kesselheim, MD, MBE, MEd, Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115. E-mail:
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
- ↵American Academy of Pediatrics, Committee on Bioethics. Institutional ethics committees. Pediatrics. 2001; 107(1): 205–209
- ↵American Society for Bioethics and Humanities. Core Competencies for Healthcare Ethics Consultation: The Report of the American Society for Bioethics and Humanities. Glenview, IL: American Society for Bioethics and Humanities; 1998
- ↵American Hospital Association. Guidelines for hospital ethics committees. In: Handbook for Hospital Ethics Committees. Chicago, IL: American Hospital Association; 1986
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- ↵National Association of Children's Hospitals and Related Institutions. Freestanding children's hospitals. Available at: www.childrenshospitals.net/AM/Template.cfm?Section=Member_Hospital_Directory1&Template=/CustomSource/HospitalProfiles/HospitalProfileResultNew.cfm. Accessed October 29, 2009
- Copyright © 2010 by the American Academy of Pediatrics