Pediatric Ethics Consults for Caregivers: Anybody Home?

Ethics consultation services (ECS) are an essential resource for clinicians, staff, trainees, families, and patients. Despite advancements in technology, science, and evidence-based medicine, the daily clinical encounter continues to weigh value-laden decisions with moral implications.ECSs serve to clarify ethical issues, facilitate discussion, and provide expertise and educational resources. Deliberations and recommendations are driven by respect for the values, needs, and interests of all participants, especially when there is a disagreement or uncertainty about treatment decisions.1,2 ECSs are widely recognized mechanisms for addressing ethical issues, facilitating communication, and easing moral distress,3,4 and have decreased costs and nonbeneficial treatment in adult intensive care units.5Pediatric ECSs have additional expertise on shared decision making, parental authority, and protecting what is in the child’s best interest balanced by evaluating harms and other factors. Issues such as assent and the mature minor might also be addressed by pediatric ECSs. Pediatric staff members lack ethics training and likely underuse ECSs although ethical dilemmas are common.6,7 ECSs also play a strong role in ethics education throughout hospitals in a variety of venues and create “moral spaces” for clinicians where discussions of ethical issues take place.8 Less is known about patient caregiver access to ethics resources or how they might contact ECSs.In this issue of Hospital Pediatrics, Sharma and colleagues describe attempts to contact the ECS for each facility registered with the Children’s Hospital Association (n = 190).9 The study quantified accessibility of pediatric ECSs using public-facing websites and phone calls to simulate reachability of the ECS from the perspective of a patient caregiver. An online search was first performed to identify an ECS contact. For those hospitals in which an online search did not reveal a phone number or e-mail, calls were made to the hospital operators first. If ECS contact was not recognized, or transfer was not made, subsequent calls were placed to pastoral care, the patient advocate, or administration. The amount of time and how many transfers it took to reach an ECS contact was documented.Only 36 (19%) ECS contacts were identified via online search, with the remaining 154 (81%) requiring phone calls. Operators could identify a contact name or number for ECS only 22% (n = 34/154) of the time and 16% (n = 30) remained unreachable after 3 attempts. An average of 2.9 attempts required successful contact, with a maximum call hold time of 25 minutes and an average callback time after voicemail of 5.8 business days.These findings should be seen with a few key caveats in mind. The authors report the following limitations: investigators performing the search have high health literacy, English proficiency, time during business hours, and internet and phone access. Limitations on any of these would likely yield further challenges in accessibility. The timing of the study may also represent a limit in that it was completed when facilities and staffing were strained by COVID-19 variants.The authors also comment that a care team may take responsibility in guiding patient caregivers in contacting ECS through internal channels and thus explain the challenges from an outsider perspective. Their study methods, however, may well model conflict between family and medical team in which patient caregivers may attempt accessing ECS outside of traditional internal requests for consults. Another limitation is that the study team only attempted phone contact to those hospitals, When online search yielded no ECS phone or e-mail. More information after the contact of those numbers/e-mails that appeared in the online search is warranted. Are the numbers and e-mails accurate and up to date? How long after reaching out to those individuals would it take to speak to a real ethics consultant? Further accessibility issues might be identified.The straightforward methods in this article revealed striking and important results. Limited reachability of ECS exists for patient caregivers at many Pediatric hospitals. This study is unique in that no other study has quantified accessibility of ECS by patient caregiver.The American Academy of Pediatrics Institutional Ethic Committee Statement reports that access to ethics consultation should be open to patients and families, in addition to surrogates, staff, and members of the medical team. The statement goes further to promote wide distribution of information to all above individuals on the availability and process of ethics consultation.10 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.”11 The Joint Commission on Accreditation of Healthcare Organizations requires that health care organizations “have in place a mechanism for the considerations of ethical issues arising in the care of patients, and provide education to caregivers and patients on ethical issues in health care.”12When studied, researchers have found hospitalized children and adults—and their families—rarely or never consult ECSs.13–15 Two studies report small percentages of patient caregivers initiated ethics consults (4% of 102)16 and (5.7% of 245)17 compared with those initiated by someone on the medical team. Few studies have attempted to learn from patients and family directly about their experience with ethics. One survey describes participant descriptions of ethical concerns,18 but did not include pediatric patients or parent caregivers.Although the reachability of the ECS to patients and their caregivers is worth exploring, it is also important to investigate patients’ and caregivers’ ethical awareness; in other words, what do patients and their caregivers know about ethics and might they see it as a resource? Ethical awareness or the lack thereof has a direct impact on the accessibility of the ECS to a patient and caregiver. In an effort to empower patients/families to request ethics consultations, Blackler et al identified potential reasons for patients’ and families’ reluctance to request the ECS such as misconception that there is an additional charge for eliciting the ECS or feeling intimidated by the power dynamic that exists between clinician and patient.19 Further research should attempt to evaluate what patient caregivers know about ECSs, how and when to best inform families about ECSs, and how best to meet their needs regarding ethical issues. Although a plethora of resources and literature exist for clinicians on the concept of ethics and how ECSs might be helpful, few are available for patient caregivers.Given how common ethical dilemmas are in pediatrics, the reported benefits of ECSs in addressing ethical issues and the recommendations from multiple leading organizations and hospitals, ECSs should consider ways of improving accessibility directly to patient caregivers. One method might be to standardize how ethics consults are made available, whether by hospital call systems or websites. Programs may consider putting contact information with parent resources on admission documents and providing online access. Some programs may worry that such exposure and advertisement of services may lead to an explosion of consults and overwhelm available ECS consultants, preferring a “gatekeeper” in the form of operator or other services. ECSs are, after all, a limited resource at most hospitals and as a non-income-generating services often depend on volunteer consultants and suffer from chronic understaffing. More research should consider best strategies on improving access with attention on how to better serve vulnerable and marginalized communities and those with low health literacy.Another area of interest may consider investigating if clinicians including faculty, staff, and trainees have similar challenges in accessibility. This study focused on the perspective of a nonemployee, but the question remains whether a hospital employee would have more success. In an era of challenges with staff attrition and moral distress, where an ECS might help address some of those issues, staff need reliable access to their ECS as well.Hospitals are required to have a mechanism to address ethical issues, and benefits of ECSs are widely recognized for patient caregivers and the health care team. Although patient caregivers may benefit from initiating a consult themselves, significant barriers exist in ability to access ECS resources. More research is required to understand how to best inform families on ECS as a resource and how to standardize patient caregivers’ access.