Parents Struggle to Contact Ethics Consultants
Multiple calls, long wait times, lack of call-backs fluster families searching for help
Not only do clinicians occasionally need help from ethicists — patients and their families do, too. However, patients and families rarely request ethics consults. “It is important for families to be able to consult ethicists. We felt we should understand what barriers they may face in obtaining consults,” says Jennifer Walter, MD, PhD, MS, director of the department of medical ethics at Children’s Hospital of Philadelphia (CHOP).
Walter and colleagues studied how easy or challenging it would be for parents to contact ethicists at 190 children’s hospitals.1 First, research staff conducted an online search to identify an ethics contact. However, they only identified 36 contacts this way. In most cases, even just finding the ethics contact required a phone call.
If so, research staff called the hospital and asked to speak to an ethics consultant. Only 22% of hospital operators identified a contact name or phone number for the ethics consultation service. In 16% of cases, the ethics service was determined to be unreachable because after three separate calls, an ethicist was either never identified or messages were never returned. Even when an ethicist eventually was identified, it often was a hassle to obtain the contact information. Research staff were waited up to 25 minutes while hospital operators tried to figure out to whom to connect the call.
When research staff left a voicemail for that person, callback times averaged 5.8 business days. Sometimes, research staff were not connected to an ethicist at all; instead, they were connected to a chaplain or social worker.
“On average, it took almost three separate contact attempts to be connected with the correct person, while holding on the phone for five minutes and waiting approximately five days for a callback,” Walter reports.
Based on these findings, Walter and colleagues recommend ethics consult services take these actions:
• Ensure contact information is on the hospital website, viewable to the public. Some ethics services post contact information only on internal websites. “We have language geared toward families in our family-facing website,” Walter says.
On that page, ethicists posted a list of possible reasons to contact the ethics consultation service, such as the child and parent disagreeing about the treatment plan.2
• Ensure hospital operators know to whom to connect when a caller asks to speak to the ethics service. “If ‘ethics’ does not exist in the paging directory, the operator will not have access to it,” Walter says.
• Inform patients and families about the ethics service. Ethicists can do this by providing printed handouts to families about the availability of ethics consultation. “In a small number of institutions, those materials are translated into some of the most commonly spoken languages,” Walter explains.
At CHOP, 245 ethics consultations were requested from 2013-2018.3 Only 5.7% of those consults came from parents. The few parents who did call ethics wanted help negotiating some type of conflict with clinicians. Ethicists start out by clarifying their role in a simple manner. “We explain that we are a third party that does not represent either the parent or the clinical team, but hears the perspective of both,” Walter says.
Only a handful of parents requested ethics consults over the past several years at Children’s National Hospital in Washington, DC. “Most were because of a conflict with the medical team,” reports Vanessa Madrigal, MD, MSCE, who co-authored a paper on caregivers requesting pediatric ethics consults.4
Sometimes, clinicians do not even realize family can request ethics consults since it happens so rarely. When it does, clinicians usually say the conflict is known to them and that they have been trying to resolve it. In some cases, parents request an intervention that clinicians are reluctant to provide because they believe it is inappropriate.
“Parents feel it’s their ethical obligation to push the boundaries. And that’s their right, to advocate for their child. But what they’re requesting might not be appropriate,” says Madrigal, director of the ethics program and an attending physician in the division of critical care medicine at Children’s National.
Some parents start out thinking the clinical team is ethically obligated to do everything that is requested. By making sure all parties are heard and understood, ethicists can de-escalate the situation.
It is possible that if families were encouraged to contact ethics directly, some requests would fall outside the purview of ethics (e.g., complaints about a rude hospital employee). In such cases, Madrigal says ethicists still can help, even if it is just to direct the caller to the appropriate person. “We need to know more about what parents consider to be ethics concerns,” Madrigal says. Madrigal sees a need for people to be more aware of the role of ethics in the hospital setting. “If you do a search for ethics resources, they are almost all for clinicians. There is increased recognition that there are not a lot of ethics resources for parents,” Madrigal observes.
It is important for patients and families to know they can ask for an ethics consult, says Ariel Clatty, PhD, a clinical ethicist at UPMC Shadyside in Pittsburgh. Pamphlets with examples of times where an ethics consultation could be helpful can spread the message. “Families usually do not have direct access to ethics within a healthcare system, or they do not know that the service exists at all,” Clatty says.
At Georgetown University Medical Center, most consults patients initiate focus on cultural or religious aspects of decision-making. The family perceives themselves as misunderstood. “The clinical ethicist has the skills to listen and mediate these situations,” says Claudia R. Sotomayor, MD, DBe, chief of the clinical ethics consultation service at Georgetown’s Pellegrino Center for Clinical Bioethics. Recently, the ethics consult service has seen an increase in consults that non-clinicians request. As with any consult, the role of the ethicists is to ensure every voice is heard, and that everyone feels respected.
“It is never our intention to assault the moral integrity of the clinician,” Sotomayor says. “We explore various possibilities to achieve the best outcome for our patient, both medically and ethically.”
Many ethics programs place a high priority on educating clinicians about the ethics consultation service, how the service is helpful, and how to consult the service. “Similar educational efforts need to occur at the community level,” urges Jordan Potter, PhD, HEC-C, director of ethics at Community Health Network in Indianapolis. Ethicists can do this by talking to the hospitals’ patient and family advisory councils, as well as spending time in the community to talk to patient populations the hospital serves. “Patients and families cannot consult the ethics consultation service if they don’t even know we exist and how we can help,” Potter adds.
1. Sharma S, Weaver MS, Walter JK. The accessibility of inpatient pediatric ethics consultation services to patient caregivers. Hosp Pediatr 2022;12:e291-e294.
2. Children’s Hospital of Philadelphia. Ethics consultation service.
3. Nathanson PG, Walter JK, McKlindon DD, Feudtner C. Relational, emotional, and pragmatic attributes of ethics consultations at a children’s hospital. Pediatrics 2021;147:e20201087.
4. Madrigal VN, Curry K. Pediatric ethics consults for caregivers: Anybody home? Hosp Pediatr 2022;12:e306-e308.
If they do not know the service even exists, how can patients or families ask for an ethics consult?
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