Abstract
“The heart of justice is truth telling”–Bell Hooks
As pediatric palliative care providers, we are often tasked with sharing a family’s narrative with others. In that process, we hope to be faithful to the truth of their lived experiences, their goals, and their values. This truth telling is as critical as our role in decision-making support and symptom management. It is through this telling that we advocate for children and their caregivers, ensuring care that is most aligned with their idea of a good and dignified life. What happens when sociopolitical issues interfere with this care?
While our advocacy through truth telling might begin with our individual patients and their families, it does not and should not end there. In order to alleviate suffering and support quality of life most meaningfully, we in palliative care must speak up loudly when institutional and structural barriers impede upon the well-being of our patients, particularly at the end of life. This has been no more evident than in the consequences of the presence of Immigration and Customs Enforcement (ICE) in the state where we practice.
When ICE launched “Operation Midway Blitz” and entered Illinois in September 2025, they brought with them a chilling effect over life as usual. Their presence and actions escalated following their arrival, and tension has turned into terror. Federal agents have stormed apartment complexes of sleeping families, deployed tear gas near a public school, and thousands have been detained and arrested.
The impact of this on our non-White patients and families, undocumented and citizens alike, has grown from an uneasy whisper to a horrific roar. Parents have shared how they planned to stay in with their child, rather than celebrate what would likely be their last Halloween together. A teen with brain cancer, in the last weeks of his life, elected to forgo school attendance, a source of immense joy, out of concern that he was placing his parents at undue risk of encountering ICE at school pick-up.
These fears of detainment and potential deportation are far from imagined. One young woman with stage 4 cancer was discharged home in between palliative chemotherapy and radiation treatments to spend time with friends and family. Almost immediately following discharge, her father went missing. It was discovered that his car had been forcibly entered and he had been taken into custody by immigration officials. She subsequently shared her story publicly, not only to plea for his return, but to raise awareness to this plight experienced by many others. As she has been throughout her medical course, she pushed away pity and sought to bring positivity into the lives of others. She has since declined further in-hospital disease-directed treatment, expressing that she was no longer emotionally or spiritually well enough to endure the likely side effects.
We have also seen the effect of ICE actions on caregiver’s medical decision-making for their children. As pediatric palliative care providers, we bear witness to parents facing the decisions they never imagined they would have to consider. At times, this may be parents deliberating whether to elect for a life dependent on mechanical ventilation via tracheostomy or a redirection of care with subsequent death of their seriously ill child. Our guiding discussions are typically focused on what parents consider to be an acceptable quality of life and what they deem to be in their child’s best interest. These decisions have never existed in a vacuum, but the looming threat of detainment and deportation has profoundly shifted the context of these parental deliberations.
This was the case for one family with an infant who was born critically ill with significant medical complexity. Repeatedly, providers assessed that he was on the brink of death. He had repeated unsuccessful extubation attempts. And yet, he kept living. His parents were faced with considering tracheostomy placement versus redirection of care if further extubation attempts failed. Ultimately, he stabilized sufficiently to spend some time at home. During this time, his parents had the opportunity to further their relationship with their beloved son. However, he was soon readmitted, again requiring intubation, and his parents were confronted with the decision of tracheostomy versus end-of-life care once more.
This time, however, the considerations were different. They worried that the father could be deported at any moment, and this introduced a new factor into their decision-making. The family had to painfully weigh whether the infant’s mother could single-handedly care for their child supported by life-sustaining equipment while simultaneously raising his three siblings. Tracheostomy placement with a home ventilator would require constant supervision. In a world without ICE, their decision would have been clear. They would elect to sustain their child’s life with medical technology. With ongoing reports of unmarked cars picking people up, however, the best path forward was less certain. They shared their torment over these decisional considerations with us, and as we quietly bore witness to this anguish, we also vowed to speak up.
In each of these cases, national politics have altered personal clinical decisions. It is a truism of palliative care, and medicine in general, that clinical decisions occur in the setting of many social, economic, and other external factors. What feels distinct now is that fear and intimidation are disproportionately impacting immigrant families, particularly how their children spend their final days.
We are the keepers of these stories that are carried with the heaviest of hearts and a question of what to do with them. We share them because truth telling is what we do in palliative care. We are tasked with staying attuned to the suffering of those around us and actively lessening it wherever we can. We are committed to meaningfully acknowledging a patient or family’s narrative. In this acknowledgment, this truth-telling, we uplift their stories. These families generously and courageously share their most vulnerable moments, and we are tasked with honoring and elevating them. There is pain in silence and power in honestly naming lived experiences. We will continue telling these truths.