Most hospitals lack adequate financial support for pediatric ethics consultation services, a group of researchers reported recently.1 “The only other study examining these issues in pediatrics was done in 2010, over a decade ago,” explains Jennifer K. Walter, MD, PhD, MS, the study’s lead author and director of the department of medical ethics at Children’s Hospital of Philadelphia.2
Another group of researchers previously analyzed adult ethics consultation scope and staffing.3 Walter and colleagues set out to conduct a similar assessment of ethics consultation services available in pediatric hospitals. The researchers surveyed 104 children’s hospitals in 2022 about staffing, function, training, and funding of ethics consultation services.
About one-fourth of settings reported 50 or more consults in the previous year. “Demand is increasing from the levels recorded in the 2010 survey,” notes Walter, adding that she and colleagues determined that 7.4 people, on average, bore responsibility for completing ethics consults.
One-third of consultants had not completed a fellowship or graduate degree program in bioethics. Twenty-two percent of institutions had no one performing ethics consults who had undergone formal ethics training or had received the Healthcare Ethics Consultant-Certified (HEC-C) credential offered by the American Society of Bioethics and Humanities. “This is despite the efforts at professionalization of ethics consultants,” Walter says.
The estimated full-time equivalent (FTE) salary support for ethics is only 0.5, on average. One-third of facilities offer no salary support at all for ethics, while three-quarters of facilities have no institutional budget for an ethics program. “Ethics consultation is time-consuming and requires expertise,” Walter says. “It is unfortunate that so many colleagues are performing these services for institutions without compensation.”
Ethics consultation work must be conducted in between other clinical or administrative responsibilities. “Given the urgency of many consults, this may limit the ability of consultants to participate in team meetings,” Walter observes.
Team meetings are useful for resolving conflicts or identifying the ethical concerns at stake. Without time protected for this work, consultants may be expected to make recommendations without an opportunity to speak with all the stakeholders. “Thus, ethicists may struggle to help build understanding and support,” Walter says.
Ethics consults also require ongoing review of the relevant literature. “This may be more challenging to accomplish without dedicated time to review the literature before making recommendations,” Walter notes.
Ethicists must be up to date on the evolving standards around issues like death by neurological criteria and the growing practice of allowing parental refusal of performing the apnea test. “The ethical literature has demonstrated a significant shift in thinking over the last five years, of which clinical ethicists need to be aware,” Walter stresses.
Elsewhere in their research, Walter and colleagues reported questions about the benefits vs. burdens of treatment, end-of-life care, and moral distress were the most common reasons for ethics consults. These recurring themes point to the need for a preventive approach. Ethicists can accomplish this by leading conversations in units with frequent consults, or units where staff frequently encounter end-of-life concerns and moral distress. “By effectively educating the staff, concerns are addressed before they become crisis situations,” Walter says.
At Children’s Hospital of Philadelphia, ethicists offer a monthly neonatal intensive care unit (NICU) ethics forum. This is an interprofessional discussion on common ethical themes within the NICU. As a result of this initiative, clinical staff are better able to articulate ethical concerns. “They raise issues that are causing distress before they reach that breaking point where there is true conflict and distrust arising within the team, or between the team and family,” Walter reports.
Edward Dunn, MD, chairs the ethics committee at a large academic urban medical center. “No one has ‘protected time’ for ethics consultation. I have always been willing to provide ethics consultation as part of my scope of practice in hospitals I have worked in,” says Dunn, associate professor in palliative medicine at the University of Louisville (UofL) School of Medicine and chair of the ethics committee at UofL Health - Jewish Hospital.
Dunn is teaching a course on ethics consultation to build such a service that is populated by physicians, advanced practice nurses, social workers, chaplains, and administrators willing to provide consultation at the medical center. “The question is: Where would a budget come from to fund individuals for their protected time in this capacity?” Dunn asks.
It is unusual for clinical ethicists to be paid for their time they devote to ethics activities, according to Philip M. Rosoff, MD, professor emeritus of pediatrics at Duke University School of Medicine.
Reimbursement is an important distinction between clinical ethicists and other medical specialties who are paid for their services. “The funds generated by ordinary consultations often are used to defray the costs of providing the service, such as salaries and overhead,” Rosoff explains. “But the associated costs of a ‘free’ service such as ethics consultation must be met by other means.”
Unless an individual’s supervisor can figure out a way to carve out some time from the consultant’s normal hours, ethics consultants who are not compensated perform this work as an “extra” on top of their regular jobs. For those places where the institution is willing to defray some of the costs, they might give the consultant’s home department a percentage of an FTE to “buy” a number of hours per week for ethics work.
“There are some institutions that have paid ethics consultants,” Rosoff says. “But the number with full-time people doing this work [are quite few].”
Ethics consultants in hospitals often come from a variety of different pre-existing clinical units in the institution. It might be chaplaincy, various medical and surgical departments, or social work. “It is often assumed that their time is funded by their primary unit employer,” Rosoff says.
Some hospitals, recognizing the inherent value of a well-functioning, well-trained clinical ethics consultation service, have devoted funds to support these activities.
“But these are much less common than the unfunded volunteer force that exists in most institutions,” Rosoff observes.
Other hospitals take a middle ground and provide limited salary support for a lead clinical ethicist, with volunteers filling other related roles. “In my experience, many hospital administrators have been reluctant to fund such endeavors,” Rosoff reports.
How do hospitals decide whether to fund ethics work? One pivotal factor is whether administrators view ethics work as a vital part of the hospital’s mission. “Without that commitment and active engagement from the powers that be, clinical ethics consultants will almost undoubtedly remain poorly resourced —albeit [with] dedicated volunteers,” Rosoff says.
Lack of funding for ethics can negatively affect many aspects of patient care, warns Lydia Dugdale, MD, MAR (ethics), director of the Center for Clinical Medical Ethics at Columbia Vagelos College of Physicians and Surgeons. “You get what you pay for. If institutions do not offer any salary support for ethics, they will end up with a well-meaning group of do-gooder volunteers, but likely no true expertise or dedication to clinical ethics consultations,” Dugdale says.
People conducting clinical ethics work without the adequate skills or experience “can hurt medical practitioners and patients alike. We don’t accept a lack of expertise in other domains of clinical care,” Dugdale argues.
There are other indirect issues if ethics is not funded. Ethics consultants often offload the work of palliative care and patient services. Before palliative care was widely available, clinical ethicists often handled many complicated goals of care conversations. In some institutions, clinical ethicists help with conflict resolution, which is the role of patient services at some locations. Ethicists are uniquely equipped to address the ethical dimensions of both roles, according to Dugdale.
“If institutions choose not to fund clinical ethicists, these other groups will experience an increase in workload — but on issues for which they may have little expertise,” Dugdale warns.
How can ethicists obtain funding? Presenting data is the best bet. “In modern life, we seem to value only the measurable,” Dugdale says.
Ethicists can track the number of consultations, the units that requested consultations, ethical questions that were addressed, and outcomes of the cases. “The number of consultations, type of ethical questions, and outcomes may be proxies for dollar amounts,” Dugdale says.
For instance, administrators will understand that 10 consults per week requires a greater FTE than one consult per month. In terms of value, consults who resolved conflicts between patients and staff demonstrate value more clearly to an institution than clarifying a procedural question.
“Outcomes that offer resolutions are likely to be lauded by health system administrators,” Dugdale adds.
For example, sometimes clinical ethicists help diffuse tensions between an angry family and a medical team by clarifying expectations, treatment goals, and facilitating communication.
“Hospital leadership definitely prefers this sort of conflict resolution to lawsuits,” Dugdale says.
REFERENCES
1. Weaver MS, Sharma S, Walter JK. Pediatric ethics consultation services, scope, and staffing. Pediatrics 2023;151:e2022058999.
2. Kesselheim JC, Johnson J, Joffe S. Ethics consultation in children’s hospitals: Results from a survey of pediatric clinical ethicists. Pediatrics 2010;125:742-746.
3. Fox E, Danis M, Tarzian AJ, Duke CC. Ethics consultation in U.S. hospitals: A national follow-up study. Am J Bioeth 2022;22:5-18.
Demand for ethics consults is rising, but there is not enough financial support, nor enough staff with specialized training in bioethics. Without commitment and active engagement from leadership, clinical ethics consultants most likely will remain almost poorly resourced, albeit with dedicated volunteers.
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