The Accessibility of Inpatient Pediatric Ethics Consultation Services to Patient Caregivers

The study was determined exempt from full institutional review board review. The contact protocol was modeled after an adult setting ethics consultation practices study⁴  with pediatric-specific revisions. All facilities registered with the Children’s Hospital Association were included (n = 190).⁵ 

Investigators documented contact attempts during business hours between December 2021 and February 2022 following a script and call pathway (Fig 1). Investigators first performed online searches using “AND” or “OR” between the facility name and bioethics committee, ethics committee, bioethics, medical ethics, clinical ethics, or ethics terms. The hospital operator was called if the online search yielded no ECS phone or e-mail.

The investigators asked operators to transfer them to the hospital’s ECS or ethics representative. The initial contact inquired into clinical accessibility of ECS. Ability to recognize this service and correctly transfer the caller to the ECS was noted as “familiarity.” Inability to recognize the term “ethics” or correctly transfer the caller to ECS resulted in the caller asking for the following contacts (in order of decreasing priority): pastoral care, patient advocates, or administration. The same method was applied when speaking with members of these departments. Pastoral care represented the highest priority first transfer because members of this department, such as chaplains, are educated and/or trained in clinical ethics and hence are likely to be familiar with their facility’s ECS, if not part of it.^6,7  Patient advocates possessed the second highest priority because clinical ethics and the promotion of patient rights are inextricably linked.⁸  Patient advocates often serve as contacts for the concerns and suggestions of patients. Administration, which oversees the general organization of health services and daily activities of the facility, was used as the final alternative. Administration possesses information on the various hospital departments and would seemingly be in the position to furnish the investigator with potential ECS staff contacts.

It was anticipated that many call recipients would need to put the investigator on hold to determine whether they could provide a useful contact. As such, call hold duration data were compiled. This was accomplished by callers referring to their phone’s call duration display.

If the recipient was not available, a voicemail was left with a return call request. The timestamps of all voicemails were noted. If investigators received callbacks, the times between the voicemails and the callbacks (callback times) were recorded. If voicemails had not been answered within 7 days, the call pathways for the voicemail recipients’ facilities were reinitiated.

Phone attempts were quantified by the number of individual calls, excluding the brief initial call with the operator. The following were each valued as 1 attempt: departmental transfer, phone call returns, and e-mail replies. For example, a transfer from the operator to pastoral care, followed by a transfer from pastoral care to an unavailable patient advocate, with who we left a voicemail, followed by patient advocate’s phone response to the voicemail would be quantified as 3 attempts.

If no ECS contact was identified on progression through the call process pathway or after 3 attempted progressions through the pathway, each spaced by 1 week, the ECS was labeled “unreachable.”

Only 36/190 (19%) ECS contacts were identified via online search with the remainder 154/190 (81%) requiring phone calls (Fig 2). Fewer than one-quarter of operators (n = 34/154, 22%) could identify a contact name or number for ECS. The remaining 120/154 operators (78%) were asked for transfers to pastoral care as the first alternative contact for ECS with all operators able to identify a chaplain contact. Only 18/120 pastoral care staff (15%) could provide contact information for ECS. Patient advocates were then consulted for the remaining 102 hospitals. Only 14/102 patient advocates (14%) provided access to ECS. Hospital administration was reached for the remaining 88 hospitals with 58/88 (66%) providing ECS contact information. Thirty of 190 ECS (16%) remained unreachable after completion of the call pathway or 3 separate attempts.

Successful ECS contact required an average of 2.9 attempts. Maximum call hold duration reached 25 minutes (mean hold time, 5.1 minutes). Callback times averaged 5.8 business days after leaving a voicemail.

This novel study revealed limited reachability of ECS. Although data describing the frequency of patient and caregiver request for ethics consults is limited, 1 pediatric hospital has reported that 5.7% of the 245 ethics consults called over 5 years were requested by parents,⁹  whereas 2 other institutions with fewer consults reported no consults called by parents.^10,11  In our search of the literature, we could not find any other studies quantifying ECS reachability by patients or families; this arguably may be the first step in understanding why parent consults may be so limited.

ECS maintain an essential role in helping families address ethics concerns, conflicts, and dilemmas. To promote respect for the “values, needs, and interests of all participants,”²  ECS should be reachable to include through internet search and institutional directories/internal rosters accessible by operators as points of contact. Of all departments, administration possessed the greatest familiarity with ECS personnel. This result is intriguing because pastoral care and patient advocates generally possess more direct ties to ECS than does administration. Nevertheless, given that administration monitors staffing and department structure, it is reasonable for them to be more knowledgeable of the ECS contacts within their facility.

Pragmatic study limitations include the study team’s high health literacy, English proficiency, time during business hours, and internet and phone access. Contact processes may be more cumbersome for family caregivers. Additionally, this study was performed during a period when health care facilities were strained by COVID-19 variants and understaffing. These factors could affect not only recognition, but the availability of a facility’s ECS if members transitioned to working from home or were facing scenarios of increased clinical care responsibilities. Finally, it is sometimes the case that care team members (ie, physicians, nurses, and physician assistants) take responsibility in guiding patients and families to access ECS directly through internal communication channels as an extension of bedside care. Future research should be performed to determine whether the unreachable ECSs were unavailable or simply nonexistent.

The American Society of Bioethics and Humanities Practice Standards state that the ECS should “take steps to ensure that patients, families, and staff are aware of the ECS, what it does, and how to access it.”¹²  To achieve this, each ECS should post contact instructions on the facility’s public-facing web site and ensure the main call center operators have ethics listed with a contact point.