Ethical decision making can look vastly different when providing end-of-life care to pediatric populations compared to adults. The challenges have hospice focused on myriad ways to better navigate goal-concordant care delivery among youths.

Stronger collaboration and staff education are needed to improve hospices’ ability to support families’ decisions as a child’s serious or terminal illness progresses, according to Dr. Brian Carter, professor of pediatrics and bioethics at the hospital and health care system Children’s Mercy-Kansas City. Carter is also chairman of the University of Missouri-Kansas City’s Department of Medical Humanities and Bioethics.

Many clinicians largely lack exposure to pediatric-specific ethics training throughout the course of their education and careers, Carter said at the Annual Assembly of Hospice & Palliative Care, an event by the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA). This trend leaves clinicians ill-equipped to face the multifaceted medical and nonmedical considerations involved in a child’s treatment, he stated.

“Just how much ethics training did [they] get in medical school, residency, fellow or continuous medical education?” Carter said at the assembly. “The amount, the depth and the breadth vary immensely across all of these opportunities for education. So, we can’t assume that everybody’s on the same page and has the same expertise. Our job is not to write the story for parents, but [to] let them write a story that they can live with. One can look at the future and what that might hold, but how are they going to be able to live beyond this tragedy?”

Navigating ethical questions

Ethical considerations among pediatric hospice patient populations take a three-pronged approach to relationship building, said Dr. Robert Macauley, Cambia Health Foundation Endowed Chair in Pediatric Palliative Care at Oregon Health & Science University (OHSU).

Relationships play an important role in pediatric hospice ethical decision-making, Carter stated. Staff must be trained to examine the dynamic interactions across different clinical teams, parents and children, siblings and other family members, he added. All relationships “hold weight and purpose” and should “guide clinicians’ analysis” around plans of care, Carter said.

“A relationship triad of physician, patient and parent [exists],” Macauley said during the assembly. “In pediatrics, the decision maker is clear [and] making decisions not based on what the patient would do, but rather what they think is in the best interest of the patient.”

The potential for a patient to live with a serious illness for a much longer duration, or even survive and overcome it, presents more complex situations to navigate, according to Macauley. As a result, the opportunities in ethical decision making may fall outside the boundaries of a surrogate decision maker for an adult patient.

A pediatric patients’ guardians or parents are granted “a whole lot more latitude in making decisions for their child,” compared to proxies of adults, Macauley said.

Understanding the legal and regulatory considerations of an ethical health care decision is important, he added. Providers need to understand the red flags of a potentially harmful situation for a pediatric patient, which vastly differ compared to adults and evolve as a child ages, according to Macauley.

Ethical interventions are more common in adult populations and mainly center around the best interest of a patient, he stated. Though less frequently occurring among pediatric populations, ethical consultations often in contrast focus on what avenue is least harmful, Macauley stated.

“In pediatrics, we just require [decision makers] to do things that are not harmful,” Macauley said. “The harm principle basically goes through various conditions that would justify state interference and parental decision making. There are different interpretations … and then also the incredible complexity … incredible implications on decision-making, both from a legal and an ethical standpoint. A lot of adult ethicists are not prepared to deal with the nuances. We have to figure out how to support them and also try to figure out what happens when as a pediatrician, maybe you’re more well-versed in that specific ethical area than a general ethicist would be.”

Ethical consultations in the pediatric hospice space occur during times of crises and moral distress, said Dr. Christopher Collura, neonatologist, pediatrician and assistant professor of pediatrics at Mayo Clinic. These consultations can involve questions around limitations of medical treatments, refusal of care, adherence to plans of care and shared surrogate decision making.

While pediatric ethical consultations are rare, staff education on the “tremendous stakes” involved is critical to outcomes, Collura said. These consultations are often led by pediatric palliative and hospice care providers who typically wear multiple hats as clinicians and ethics committee members, he explained. The dueling roles come with advantages of care collaboration and an established relationship with the family, but also disadvantages of mitigating staff’s biases.

“What we find is kind of a rare four leaf clover paradigm here,” Collura said at the assembly. “Some of these very, very hard questions carry a tremendous amount of weight and there can be trust because of your ability to understand those values and preferences moving forward. There’s very clear ethical questions that need to be addressed, and we’re going to help to try to answer those things. We rely on ourselves to mitigate our own biases and make sure that our vectors are pointing in the same direction.”