Medically Fragile Children: When it’s Time for the Physician to Listen

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A nurse cares for a child at the Children's Hospital of San Antonio. Photo by Scott Ball.

Scott Ball / Rivard Report

A nurse cares for a child at the Children's Hospital of San Antonio.

Nothing wounds a parent and family more quickly or deeply than the pending loss of a beloved child to illness or unintentional trauma. The fact that disease or harm can infiltrate the lives our most innocent population often feels like an unspeakable betrayal.

After more than 30 years of practice as a pediatric oncologist and palliative care physician, I still often find myself at a loss for words that are powerful enough to describe this kind of pain. When a child is affected by a terminal illness, it creates a profound rupture in the day-to-day narrative of a family’s life and is debilitating for everyone involved – so much so that just putting one foot in front of the other poses a significant challenge every day. While we all have to accept that no promises can be made and that our lives can change in an instant between the notes of a beating heart, the very thought of losing a child still stands among our greatest of human fears.

The task of the palliative medicine pediatrician is to work closely with the patient and family to forge a new path forward. The care is patient-centered and there is always an interdisciplinary team of professionals supporting the process – social workers, grief counselors, and the hospital chaplaincy, among others. Medical and technological advances have served to decrease the pediatric mortality rate, including many childhood malignancies, which have declined for almost every age population in recent decades. However, that translates into children with chronic, complex, and advanced diseases – many of whom would have died in infancy only a decade ago – who are now expected to live well into the third decades of their lives and beyond.

We may be in a state where we need to redefine terminal illness.

A Pew Charitable Trusts report from July 2015 concluded that “approximately 3 million children in the U.S. are medically complex. The number is expected to reach nearly 5 million in the next decade as medical advances improve life expectancy for kids with congenital heart defects, sickle cell anemia, cerebral palsy, and cystic fibrosis.”

While childhood death is still relatively rare in the U.S., it is exactly that relative rarity of childhood illness that makes it more difficult for caregivers to develop best practices and best models of care, and the medical expertise needed for all of these disease entities to be treated efficaciously. Palliative care pediatricians must be acutely aware of children’s developmental stages in order to help them cope with death. There are significant distinctions between how we care for a 2-year-old, and how we care for a 16-year-old, as their developmental age makes a difference in how they process, understand, and express their own death.

Very little is known about how young children think about end of life. Much of what we do know as physicians has been extrapolated from existing data as to how they might express their hopes and fears. Children who are 1-3 years of age have little understanding of future and past events. Death in the mind of young child is viewed as a continuum of life, almost like a different state of being, such as an asleep or awake cycle. For children who are 3-5 years old, death is sometimes viewed as a punishment or as an external force, sometimes personified as a kind of boogey man. This is kind of thinking is not unusual for this age group because they are very egocentric at this stage of development.

Children who are 5-10 years old understand that death is permanent – when the heart stops, the blood stops circulating through the body. But even though they understand that death happens to those they love, they do not understand or accept that it could happen to them. It is important to be honest with this age group and to provide specific details should the children asked for them – Conversations with this age group can actually lessen anxiety and fear.

Young adolescents tend to think in a more abstract and mature manner, viewing death as a final and universal experience. It is not unusual for this age group to worry about their family and how their parents will survive. It is critical to reinforce the sense of self-worth and self-esteem in these children and to encourage them to share their feelings. Legacy-building often becomes a critical tool with this population to help instill a sense of real meaning in their lives.

When I first meet with patients they are usually scared because they know something is not right. All I want to do in a first visit is listen to them and learn where they are. But when therapy is unsuccessful, I find myself having to listen even more carefully to the values and wishes of my young patients and their families. I never try to convince parents of anything. Most families hope for a miracle, but what they are often in greater need of is comfort and support.

When the end is near, it is time for physicians to listen closely to patients’ wishes and begin helping families redefine hope into a more realistic framework. Palliative medicine means helping someone live with something that will never go away. These are precious lives that deserve nothing less than to live as fully as possible, even as they draw their very last breath.

While these are often challenging and difficult journeys, it has been an incredible honor to be a pediatric oncologist. But it took me 30 years to wake up and to understand the goal is not always to cure – my ego would not let me accept this – but to heal.

Yes, there can be great healing, even in the final moments of life.

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