Pediatric Quality of Life Program (Palliative Care)
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
- 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.
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
|Name||Areas of Special Interest|
|Raymond 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|
|Megan E. Jordan, MD||Adult and pediatric hospice and palliative medicine; development of international palliative care in Latin America|
|Heather S. McLean, MD||Pediatric hospital medicine, performance and quality improvement, pediatric pain and palliative care, resident and medical student education|
|Kristin E. Meade, MD||Palliative care for patients of all ages across diverse clinical settings, medical ethics with special focus on the ethics of providing ICU-level care to children and young adults with complex chronic medical conditions|
|Cheryl Thaxton, RN, MN, CPNP, CHPPN, FNP||Pediatric Nurse Practitioner/Program Coordinator|
|Deanne Buschbach, RN, NNP-C, PNP-C||Critical Care Nurse Practitioner|
|Amanda French, RN, CNS||Perinatal Clinical Nurse Specialist|
Affiliated Faculty and Staff
|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
Hours: Monday through Friday, 9:00 am - 5:00 pm
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).
We love hearing from our patients and families and value your feedback. Please feel free to contact us with questions or comments.
- Pediatric Quality of Life Program Newsletter
Fall 2012 [PDF, 807KB]
- Pediatric End-of-Life Nursing Education Consortium Training, 2013 [PDF, 425KB]
Pediatric Quality of Life Service of Remembrance
- When: Saturday, June 21, 2014
- Where: Goodson Chapel at Duke [Directions]
- Time: 1:00 to 3:30pm
- Contact: Marion Kalbacker, MSW, LCSW or 919-668-1201
Compassionate Passages, Inc., a non-profit organization that gives a voice to pediatric patients and their families with the goal of improving pediatric end-of-life care via advocacy, education, and research, is this month's featured organization. Please visit the Compassionate Passages, Inc. web site for additional resources and contact information.
- American Academy of Hospice and Palliative Medicine
- American Chronic Pain Association (ACPA)
- American Hospice Foundation
- American Pain Foundation
- American Pain Society
- Caring Connections
- Center to Advance Palliative Care
- Children's Hospice International
- Family Caregiver Alliance
- Growth House, Inc.
- Initiative for Pediatric Palliative Care
- National Alliance for Caregiving
- National Family Caregivers
- National Hospice and Palliative Care Organization (NHPCO)
- National Network for Pediatric Palliative Care
- National Organization For Empowering Caregivers
- National Palliative Care Research Center
- Palliative Care (WebMD)
- Partnership for Parents
- Share the Care
- The Compassionate Friends
- The Dougy Center
- The National Palliative Care Research Center