We already know President Donald Trump’s travel ban has triggered a host of lasting negative effects since its introduction in February 2017, from the obvious (tearing families apart) to the less apparent (hurting America’s medical system). The Supreme Court upheld the ban last summer, ruling that the administration has broad powers — which include preventing travelers from Muslim-majority countries from entering the U.S. — to address public safety threats such as terrorism.
But those provisions hurt some of the most vulnerable individuals in our country: pediatric hospice patients and their grieving families.
Under the ban’s current iteration, travel is largely prohibited from the seven countries on the list, which are Muslim majority or are perceived as hostile. And while the ban purportedly allows banned travelers to access visas on a case-by-case basis, experts say the provisions make eligibility close to unattainable, especially for those without access to an immigration attorney. As of June, only 2 percent of visa applicants received waivers from U.S. consular officers ― with grave consequences. Many refugees are stuck in violent countries or choose to risk their lives to escape. In Louisiana this summer, a Yemeni-American man killed himself after his wife and two sons were denied visas.
As a pediatric hospice nurse, I’ve witnessed how family separation affects both the dying and the bereaved. In March an 11-year-old boy from the Democratic Republic of the Congo died under my care before he could be reunited with his mother and four siblings, who remain in a refugee camp in Zimbabwe. I cared for a newborn in May who never got to meet her grandparents from Venezuela, adding indescribable layers of grief to an already horrifying reality. My team and I are caring for a teenage boy originally from Syria. He will likely never see his adult sisters again, who aren’t allowed into the country under Trump’s travel ban. This refusal to allow immediate family members to be with dying children is an infringement on their human rights.
If the U.S. government truly sought to create immigration and travel policies that strengthen our country, it would consider the purpose of palliative care and hospice. At their core, they exist to provide as much comfort as possible to individuals with life-limiting, terminal illnesses; in the case of pediatric hospice particularly, our job is to provide physical and emotional support that enhances quality of life for children and their families after a life-limiting diagnosis. This support continues for two years after a child’s death.
As a pediatric hospice nurse, I’ve witnessed how family separation affects both the dying and the bereaved.
Those of us who work in pediatric hospice provide support for parents, but we also rely on parents to make important decisions about their child’s comfort and care. The same holds true for siblings. Family involvement is so intertwined with the bereavement process that research has likened a patient’s immediate family members to drugs. The presence of loved ones decreases anxiety for dying children, and the opposite is also true: Extensive research shows that the absence of parents drastically increases anxiety, which can amplify a child’s physical pain.
“If we consider all acts of comfort, psychological support and communication as components of palliative therapy, particularly in palliative care, medical and parental care can not be separated from each other,” pediatric oncologist Carl Friedrich Classen wrote in a 2012 paper in the World Journal of Clinical Pediatrics. “Usually, the care for a severely ill child is done by parents and professionals together, and they have to work together to function best for an ill child.”
It’s crucial that families remain involved in the pediatric hospice process whenever possible. When families aren’t together before the death of a child, it not only severely negatively affects the child but also leads to considerable emotional and physical distress for the surviving family members. Pediatric hospice care isn’t just for the dying child; it’s an ongoing support system and a crucial network of services for entire family units.
And without access to such support, separated families are put at great risk. The loss of a child is, obviously, an emotionally taxing event for any family, resulting in unique medical, psychosocial and spiritual needs. But these crippling effects increase tenfold when grief is discounted by communities and systems. I’ve worked with family members who suffered heart attacks after the loss of a child from whom they were separated. Studies from Arizona State University show mental health issues and substance abuse are prevalent when life-altering loss isn’t acknowledged and supported by community resources; this can lead to further disruption of family units and marriages. And without proper community support, siblings of dying children are at higher risk for suicide.
These findings, coupled with the emotional costs of grief, demand that government officials adopt a new approach to immigration and temporary visa allotments. The current waiver application process is ambiguous at best; it doesn’t provide clear guidance on how to apply or how families can expedite their waivers if an immediate family member is dying. And the low acceptance rate leaves families feeling helpless and held ransom by their grief. Time is a very limited resource for pediatric hospice families ― one that’s quickly drained when caught up in an arduous process with no promise of approval.
Trump’s travel ban is problematic for too many reasons to list here, and I won’t attempt to address them all; however, one way the U.S. government could reduce the impact of grief on separated families would be to implement exceptions that provide access to travel ban waivers for immediate family members of dying children. Togetherness among family members before death, even if for only a structured and limited amount of time, promotes resilience and paves the way for a healthy path forward.
If we want our communities to be a source of strength for our nation, families must be honored and respected in our laws and by our governing bodies. Immigration law reform simply cannot ethically move forward without input from those of us deeply involved in pediatric hospice and bereavement care.
Lanise Shortell is a pediatric hospice nurse and certified grief recovery specialist in Atlanta.