Not about dying but living—new film shows benefits of patient-centric care


Matteo bursts onto the screen, full of life, language and an infectious sense of humor—a personality that overshadows the tracheostomy tube emerging from his neck.

Matteo suffers from Ondine’s syndrome, also known as congenital central hypoventilation syndrome. The rare condition results from an absence of the autonomic impulse to breathe, requiring the individual to require respiratory support equipment during sleep. It can also result in long-term health concerns related to oxygen deprivation such as pulmonary hypertension and heart failure.

But for Matteo, although his long-term future is uncertain, his disease is simply the context of an otherwise normal, happy life. That’s because his family and healthcare providers form a team that not only attend to Matteo’s extensive medical needs but also his quality of life.

This practice of medicine is known as palliative care, and is the subject of a new documentary called “Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness.” Along with Matteo, the film features children from around the world who, in the face of life threatening or life ending illness, have a team of healthcare providers as focused on life’s quality as its quantity.

Many people may be more familiar with palliative care in the context of helping manage the dying process, says Tamara Vern-Gross, radiation oncologist at Provision Center for Proton Therapy and a palliative care specialist. This week she hosted a special viewing of the movie for Provision staff and area health care providers.

“There is often a misconception that palliative care means ‘giving up’ or is strictly limited to end-of-life care,” she says. “In general, palliative is designed to find meaning and help families and patients learn how to live better when faced with a life-limiting or life-threatening illness—whether a patient may live weeks or months or years. It is about finding the cure but also to identify the other things that are important when dealing with a life-altering illness.”

Those needs range from sorting through a myriad of treatment options to financial concerns to family relationships to pain management and addressing a range of emotional, psychological and spiritual needs. And in the case of children, it becomes more complicated as parents try to navigate through the demands of school, work, sibling needs and their own grief.

“In the beginning, there is often hope for a cure,” Vern-Gross says. “But we always want to have hope for comfort and meaning as well. We find resources in the community for families, depending on what their needs are. We identify the social concerns, the physical concerns, the spiritual concerns, and we try to fill those needs as well.”

For children, thanks to modern medicine those with complicated medical conditions and childhood cancers are being successfully treated and living longer, however that creates a greater need for palliative services as families manage their lives around chronic illness. Just over 15 percent of children in the U.S., ages infant to 17, have special health care needs, according to September report release by the National Hospice and Palliative Care Organization. Of these, “57% have two or more chronic health conditions, 68% have difficulty with at least one bodily function and 60.5% have difficulty participating in any activity.”

A growing number of medical centers and children’s hospitals are investing in palliative care teams, however understanding  the importance of this service is still limited among individual practitioners, said Vern-Gross. And some families, who end up dealing with more than one medical center, may not benefit from available services.

For her part, Vern-Gross makes it a priority to ask patients about other needs besides medical care, and then works to match them with available resources. This can include physical therapy, wellness, social worker services or psychological assistance. East Tennessee Children’s Hospital, a Provision partner in the care of pediatric patients, also has a palliative care team.

“Patients come to Provision for a couple of months, many are away from home, there may be additional issues they are dealing with that can be addressed during their stay here and help with their transition back home,” she says. “We have resources we can connect patients with here on campus and in the area. We can assist with symptom management, coordination of care, support services and transitions of care, to name a few, depending on the patient and family’s individual needs.”

Palliative care helps bring a sense of normality, optimism and support to even the most difficult of diagnoses. For more about how palliative care has impacted the lives of Matteo and other children and families, watch this series of short films on the “Little Stars” website.