Very few hospitalized children with chronic critical illness get ethics or palliative care consultations, found a recent study.
• Clinicians may be unaware of ethics, or fear judgment or retribution.
• Ethicists must understand the complexities of this pediatric population.
• Many families face difficult choices regarding life-sustaining treatments, which often have unclear benefits and burdens.
Palliative care and ethics consultations for children with chronic critical illness are surprisingly uncommon, found a recent study.1 Researchers looked at 385 hospitalized children at six academic centers and found that 12% received palliative care consults. Less than 1% received an ethics consultation.
This was despite the availability of pediatric palliative care teams at five out of six centers and ethics committees at all centers. “Ethics represented the most significantly underutilized resource,” says Alison J. Falck, MD, one of the study’s authors and assistant professor of pediatrics at University of Maryland School of Medicine.
Increasing numbers of children are living with chronic critical illness. “Often, these children are living with complex medical conditions that require ethically challenging decision-making,” says Falck.
Many families face difficult choices regarding life-sustaining treatments, which often have unclear benefits and burdens. “It is important for hospital ethicists and ethics committee members to understand the complexities of this small but growing number of pediatric patients,” says Falck.
Barriers to Consults
Poor previous experiences with ethics consults make some clinicians reluctant to call for help. Others fear being chastised for unethical practices, while some do not even realize ethicists are available. “Despite our having an ethics consult service for over a decade, we still encounter people who are pleasantly surprised that there is an ethics service available to them,” says Jennifer K. Walter, MD, PhD, MS, an attending physician for the pediatric advanced care team at Children’s Hospital of Philadelphia.
ICU staff may perceive that they already know what is ethical. “People are perhaps less aware of ways in which their own value system may be in conflict with the family,” says Walter. The ICU staff does not always see this as something that calls for mediation by a third party.
“There are many myths about ethics consultations that still plague institutions and may be a barrier to requesting consults,” says Erica K. Salter, PhD, program director of healthcare ethics at Saint Louis (MO) University.
Some clinicians see an ethics consult as a challenge to their integrity. “Ninety-nine percent of the time we are dealing with only well-intentioned, conscientious providers who truly wish to do their best by the patient,” says Salter.
Fear of reception or retribution is another deterrent. Nurses occasionally admit that they wanted to call ethics sooner but were afraid of the attending physician’s reaction. “This is challenging and unfortunate,” says Salter.
More Than One Answer
At times, the ICU team’s idea of what they want for the patient conflicts with what the family expects in terms of aggressiveness of care. Multiple family meetings are held, concerns are expressed, and a rift develops. “The perception arises that the family is being judged by the clinical team,” explains Walter.
In this tough situation, ethicists can point out that there are a range of ethically acceptable choices.
“There is usually not just one answer that people have to follow,” says Walter. When there is a values disagreement in the care of a child, parental preferences are honored unless the team has evidence of harm or neglect, which is almost never the case.
Clinicians themselves may disagree. Nurses providing day-to-day care may perceive significant suffering. In contrast, says Walter, “Physicians who are not at the bedside all day are working with different information.”
Ethics bring the clinical team together for an open discussion. “The goal is to create a shared mental model for the whole team in terms of what we might be able to achieve in terms of the patient’s recovery,” says Walter.
Unlike other units with formal reporting mechanisms, communication amongst the time-pressured, frequently rotating ICU team is sometimes fractured. “The information that the whole team carries is sometimes held by only one or two members,” says Walter.
If the person who knows the big picture is not available, patients and family may get mixed messages. Walter suggests having someone, such as a primary attending or palliative care physician, serve as a repository of information.
Increased awareness of ethics has resulted in more consults being called. This is because clinicians are more comfortable and familiar with what ethics has to offer. “They come to us with incredibly challenging cases they’ve been struggling with, they see we take a collaborative approach, they realize it’s valuable — and they call us again,” says Walter.
Establish Rapport in Advance
At Saint Louis University Hospital, clinicians find ethics particularly helpful in these two types of cases involving children with chronic critical illness:
• Cases where there is a disagreement between the parents/family and providers on what constitutes an acceptable quality of life to initiate or continue aggressive medical intervention.
“These can be tough cases for providers,” says Salter. For example, a patient with severe neurological injury and limited conscious awareness may require a tracheostomy and feeding tube. For clinicians, it can be helpful to hear directly from the parents. They might hear words such as: “We understand this sort of life wouldn’t be meaningful to you, but it’s meaningful to us. We have a relationship with this child; she’s a part of the family, no matter how disabled.”
“Ethics consults are opportunities for stakeholders to sit down and really hear from each other about what specifically concerns them about the child’s experience,” says Salter.
• Cases where there are disposition concerns.
It can be very distressing for providers to initiate aggressive interventions on a child for whom there is no obvious place of safe discharge with adequate, skilled caregiving assistance. “In these situations, we have to get creative about identifying and piecing together the right resources for families,” says Salter.
To encourage consults on challenging pediatric cases, ethicists need to “be around, listen, and be helpful,” says Salter. This does not mean serving only the needs of providers; ethicists obviously have a duty to serve patients’ and families’ interests. “But at the heart of most effective ethics consults is a relationship between the consultant and team,” says Salter.
To demonstrate they understand clinical realities and can offer helpful advice, Salter says, ethicists at Saint Louis University Hospital make regular rounds in the pediatric and neonatal ICUs and oncology.
“This builds the rapport needed to be invited back during the crisis or conflict situations,” says Salter.
1. Boss RD, Falck A, Goloff N, et al. Low prevalence of palliative care and ethics consultations for children with chronic critical illness. Acta Paediatr 2018; 107(10):1832-1833.
• Alison J. Falck, MD, Assistant Professor, Pediatrics, University of Maryland School of Medicine, Baltimore. Phone: (410) 328-6003. Email: email@example.com.
• Erica K. Salter, PhD, Program Director of Health Care Ethics, Saint Louis (MO) University. Phone: (314) 977-6664. Email: firstname.lastname@example.org.
• Jennifer K. Walter, MD, PhD, MS, Pediatric Advanced Care Team, Children’s Hospital of Philadelphia. Email: email@example.com.