Pediatric Palliative Care: a Gentle, Individualized Philosophy of Care

10/05/2018

Parents and daughter smiling together

Child-Centered Solutions for Seriously Ill Children

Healthcare providers who care for children with chronic, complex or potentially life-limiting diseases and conditions can find additional, supportive solutions from experts in pediatric palliative care.

Palliative care’s goal is to relieve suffering and enhance quality of life for a child and family facing a serious, life-altering diagnosis. Interdisciplinary palliative care teams work closely with the patient, family and healthcare professionals—pediatricians, hospitalists, specialists, consultants and other members of the treatment team—to address pain, manage symptoms and provide compassionate, realistic, child-centered care at every phase of an infant’s, child’s or teenager’s illness or disease.

A Focus on the Person, Not the Disease

“We believe that every patient is a bio-psychosocial-spiritual being, and that’s how we base our approach to pediatric palliative care. We treat the person, not the disease,” says Amy Pantaleo, a VITAS nurse practitioner (NP) who works on the pediatric palliative care team at Joe DiMaggio Children’s Hospital in Hollywood, Florida. The team includes two physicians, two NPs, social worker, chaplain, music therapist, art therapist, child life therapist, exercise physiologist and yoga therapist to enhance quality of life for children, who may or may not be terminally ill.

The differences between palliative care for adults and children hinge on realistic expectations and the range of supportive services, Pantaleo explains. Pediatric palliative care starts at the time of diagnosis, positioning the palliative team as an extra layer of support throughout the patient’s and family’s journey.

“The adult world often focuses on aggressive, disease-directed treatment,” she says. “The pediatric philosophy is a lot gentler, more individualized. There’s more focus on treatments being done for a patient vs. being done to a patient, especially if a prognosis is deemed unfavorable.”

Here's what VITAS Nurse Practitioner Amy Pantaleo has learned:

“Children teach me that life is precious, and that life is not predictable,” she says. “They really do embrace every single day, especially children who are hospitalized for extended periods.

“They appreciate a smile, company or an unexpected visitor. They want to feel special, even if they feel very different or not very special at all. To me, they are all special because they are incredibly strong. They portray what it means to be a fighter.

“They teach me that there are so many different arrays of patients, people and families—some of them incredibly supportive and some not at all,” she says. “They teach me that no matter what their circumstances, I can give these children joy, something that touches their hearts.”

Here’s how pediatric palliative care supports healthcare professionals:

Goals-of-Care conversations:

The team coordinates care and helps parents, families and healthcare teams explore options and make difficult but informed decisions about ongoing treatments and supportive care, based on key questions:

  • What are your goals? What are your wishes?
  • What are your hopes and fears?
  • What kinds of family-centered, culturally appropriate and easily accessible care will help your child and your family most?
  • What interventions and treatments do you want to pursue or decline if your child’s disease progresses or worsens?
  • What are your preferences for end-of-life care?

Supportive therapies and integrative solutions:

Music, art and play therapy, relaxation, yoga, exercise, massage and other services help children cope with the stresses of hospitalization, treatments, symptoms and pain.

Consultation:

Palliative specialists educate medical teams about palliative options and are available to prepare physicians for family consultations about a child’s next phases of care (e.g., the risks-benefits of another major heart surgery) or pending decisions (e.g., whether to continue or stop chemotherapy or mechanical ventilation).

Family and sibling support:

Palliative specialists educate parents about an ill child’s diagnosis, prognosis and needs, and they also provide sibling counseling and ongoing bereavement support.

Who is Eligible for Pediatric Palliative Care?

Infants, children and teens who are referred to palliative services face challenging symptoms and diagnoses ranging from advanced cancer to HIV, cystic fibrosis to cerebral palsy, metabolic disorders to muscular dystrophy.

According to the National Hospice and Palliative Care Organization, key diagnoses for children receiving palliative care are:

  • 41%: Anomalies linked to congenital or genetic defects/disorders
  • 39%: Neuromuscular disorders
  • 20%: Cancer
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