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Pediatric Quality of Life Program (Palliative Care)

Enhancing the quality of life and minimizing suffering for children with life-threatening illnesses.

The Pediatric Quality of Life Program (Palliative Care) at Duke Children’s Hospital & Health Center offers comprehensive, family-centered care for children with complex, life-threatening or chronic conditions. The multidisciplinary program draws on resources from within the hospital, home health agencies, hospice and formed communities such as faith communities.

Whether suffering is physical, emotional, social, or spiritual, Duke Children’s Quality of Life team provides treatment to relieve symptoms and conditions that cause distress and detract from a child’s enjoyment of life. Working with the family’s primary care team to augment services already being provided, treatment includes care from time of initial diagnosis of a life-threatening or complex, chronic illness through death and bereavement, if that occurs.

Why is Pediatric Palliative Care Important?

Here are a few reasons why specialized Pediatric Palliative Care is important:

  • Life-threatening illness in a child affects extended families and communities and requires specialized approaches to coping and grief.
  • Symptoms experienced by children with complex illness require specific expertise to provide the best medical management with the least interference in daily life.
  • Coordination and support from the Pediatric Quality of Life team can help a family’s medical team simplify care, which improves patient satisfaction and safety.
  • Predicting medical outcomes in children can be difficult because children respond differently than adults to both drugs and therapies; children are more resilient than adults; and many children are born with rarely seen medical conditions. All of these factors make diagnosis, prognosis and medical management more complex.

"Each Duke Children's family member has a special understanding of what matters most in their life when facing a serious diagnosis or prognosis--and whether one identifies as religious and spiritual, spiritual-but-not-religious, or having more of a philosophy of life, each family's beliefs, values, cultural traditions, and ethics help them "Cope with Hope" while making meaning, living with purpose, and daily creating a mark on this world that inspires others to be all they can be. . . regardless."

--Chaplain Annette Olsen, MDiv, BSSW, BCC

Program Goals

  • To provide a clinical consult service for primary care teams with an emphasis on care planning, care coordination, symptom control, end-of-life care, spiritual care, and research.
  • To develop a comprehensive educational program focusing on the principles of palliative care for staff, residents, fellows, nurses, and faculty within the Duke University Health System.
  • To develop a research plan to gain a comprehensive understanding of the needs of seriously ill children and their families and to ensure the delivery of optimal palliative care throughout the course of complex illness.
  • To promote the use of evidence-based and scientific research methodologies in our practice of pediatric palliative care in conjunction with the guidelines set by the National Quality Forum as well as other national organizations that support pediatric palliative care programs.

Treatments

Working from a care plan developed individually with each patient and family, Duke Children’s Pediatric Quality of Life team works with the family's primary care team to:

  • Help the family pursue pain and symptom management in conjunction with medically-directed therapy.
  • Help the family make tough, but informed, decisions by communicating openly about a child’s prognosis and the side effects of treatment options.
  • Promote ongoing discussion to optimize achievement of goals of care.
  • Coordinate and conduct family care conferences.
  • Provide community and family education.
  • Provide psychosocial support services and spiritual care.
  • Maintain liaison for community resources available for families.

Physicians and Staff

Physicians

Name Areas of Special Interest
Ray C. Barfield, MD, PhD Research focused on improving therapeutics for neuroblastoma, improving the quality of life of children with complex, chronic or fatal illnesses, and study of areas where medical and theological interests intersect
Margarita Bidegain, MD, MHS-CL High-risk neonatal care, prenatal, neonatal and pediatric palliative care
Heather S. McLean, MD Pediatric hospital medicine, performance and quality improvement, pediatric pain and palliative care, resident and medical student education
Stacey L. Peterson-Carmichael, MD Lung pathophysiology as it relates to acute and chronic lung disease in children; performance of lung-function measures in infants with ventilator-associated lung injury; respiratory syncytial virus (RSV), congenital diaphragmatic hernia
B. Craig Weldon, MD Blood management, mechanical ventilation, postoperative delirium

Nurse Practitioners/Nurses

NameRole
Cheryl Thaxton, RN, MN, CPNP-PC, CHPPN Pediatric Nurse Practitioner/Program Coordinator
Deanne Buschbach, RN, NNP-C, PNP-C Critical Care Nurse Practitioner
Marie Peluso, BSN, RNC-NICU Clinical Nurse
Amanda French, RN, CNS Perinatal Clinical Nurse Specialist

Affiliated Faculty and Staff

NameRole
Debra Brandon, PhD, CPNP Research
Sharron Docherty, PhD, CPNP Research
Julie Thompson, PhD Research
Tammy Uhl, RN, MSN, CCRN, CCNS Research
Rebecca S Maher, MSW, LCSW Clinical Social Worker
Arthur W. Taub, MSW, LCSW Clinical Social Worker
Annette Olsen, MDiv, BSSW, BCC Spiritual Care / Clinical Chaplain

Clinic Locations and Hours

Duke Children's Hospital & Health Center
2301 Erwin Road
Durham, NC 27710
Tel: 919-668-4000
Hours: Monday through Friday, 9:00 am - 5:00 pm

Appointments

The Pediatric Quality of Life service is available to any infant, child or adolescent and their families who is admitted to Duke University Medical Center for ongoing care and treatment of a potentially life-limiting illness. A referral is required from the Primary Pediatric Care team.

Consultations are available Monday through Friday from 9:00 am to 5:00 pm. Team members are available by pager: 919-970-HELP (4357).