Pediatric palliative care focuses on relieving pain and enhancing the quality of life of children with severe, life-limiting, or life-threatening conditions. At Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del., our pediatric palliative care team uses a variety of therapies to help these children feel better (physically and emotionally) — no matter what kind of condition or prognosis they face.
But it’s more than just treatment — our pediatric palliative care team provides a compassionate, supportive and organized approach to care that’s geared toward helping your child’s whole body, mind and spirit. And caring for a child with a medically-complex or chronic illness means caring for your whole family — offering support and comfort for your child, your family and your journey.
At every step, we involve you — the family — because no one knows your child better or understands more about what you child and family are going through than you do.
“A pediatric palliative care program is necessary for the quality of life for a critically ill child and their family. It is imperative to minimize the child's pain, while guiding and nurturing the family during this most difficult time of their lives. An effective palliative care program will reach beyond the walls of the hospital and help sustain the family for years to come."
— Diana, a mother, who (after the loss of her child)
championed the effort for the creation of a pediatric palliative care program at duPont Hospital for Children
“We love our team at Nemours and we feel loved by them … Everyone takes care of Lucy first then takes care of her medical needs. It’s made a huge difference for our family.”
— Nicole, mother of Lucy, age 3,
who has mitochondrial disease (a chronic genetic disorder)
The Palliative and Supportive Care Program is accessible 24/7, offering care within the hospital setting, hospice or other healthcare facility.
Phone: To schedule a consultation with the Palliative and Supportive Care Program, call (302) 651-4863.
- photo ID
- medical and pharmacy insurance cards
- preferred pharmacy name and phone number
- names and dosage of all medications, including over-the-counter medication, your child is currently taking
- guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
- Patient Presents Without Legal Guardian (PDF)
English | Spanish
Note: A parent or legal guardian must be with a child for a first visit.
Resources for Patients & Families
- Alternative Medical Therapies: From art therapy to yoga to on-site massages at the hospital, find out what integrative medicine services are available to you and your family
- Ronald McDonald House of Delaware: a safe, free, family-centered home away from home when your child is sick and needs to be hospitalized
- Caring Bridge: A free site offering support and communication to help your family through your child's medical journey
If you’re struggling to make a difficult decision regarding your child’s pain, symptom management or care, our pediatric palliative care team will be there. We want to help make every day a little easier — a little better for children with life-threatening or life-limiting conditions. If your child is nearing the end of life, our pediatric palliative care specialists are dedicated to helping your child feel as comfortable as possible, live each day to the fullest, and to helping you and your family prepare for a peaceful death without giving up hope.
“I’m proud of being able to serve patients and their families with this valuable [pediatric palliative care] program at duPont Hospital for Children,” says medical director of the program, Dr. Elissa Miller. “My intentions are to help children achieve a higher quality of life and comfort as well as to relieve their pain. It’s the right thing to do.”
Our pediatric palliative care program can help children with serious, chronic, life-threatening and life-limiting illnesses such as:
- neuromuscular disorders (like muscular dystrophy, cerebral palsy, spinal muscular atrophy)
- genetic disorders (like Trisomy 18, Trisomy 13, severe forms of osteogenesis imperfecta)
- metabolic disorders (like Krabbe’s disease, Hunter’s/Hurler’s disease, Sanfilippo syndrome)
- blood disorders and bone marrow transplant recipients
- chronic respiratory failure
- extreme prematurity
We know that some treatments may cause your child to feel lousy — and helping your child feel better is one of the things we do best. Using a variety of therapies, our pediatric palliative care specialist care for the whole child, helping to ease anxieties and symptoms so children can feel and rest as comfortably as possible.
Some symptoms our pediatric palliative care experts can help manage include:
- poor appetite
- feeding intolerance
- sleep problems/insomnia
- neuropathic pain
- disnea (trouble breathing, respiratory symptoms, coughing)
Your pediatric palliative care team will consist of doctors, an advanced practice nurse, social worker and chaplain, all using a variety of therapies to help your child and family.
Depending on your child’s diagnosis, a combination of several specialists may be involved in the care of your child, including:
- social workers
- pastoral care providers
- pain management specialists
The extended team helping to co-manage your child’s care may also include:
- child life specialists: Who use positive coping strategies to help children understand and cope with their condition, their treatment and the entire hospital experience
- physical therapists: Who can use a variety of methods (such as massage and stretching, as well as specialized equipment and tools) to help your child find relief from pain associated with some treatments and illnesses
We understand the importance of communication between your family and your child’s pediatric palliative care team. Initially, we’ll sit down with your family and others who are important to your child and talk about goals, concerns, fears and wishes. Respecting your family’s cultural and ethnic background, we'll work with you to:
- lend support
- help make recommendations to your child’s healthcare team
- create a plan for therapies that could help relieve your child’s physical and emotional pain
- suggest options that also could help you and your family cope
- assist with transition from hospital to home, hospice or other healthcare facility
“In my experience, when families are involved early in the decision-making process regarding their child’s care, they become more confident and better informed in making choices that are attainable and acceptable to them as a family.” — Val Rigby, RN, a pediatric palliative care nurse specialist at duPont Hospital for Children
To help with coping, we offer:
- Pain management: Dedicated pain management specialists will work with your child to ease symptoms such as nausea/vomiting, constipation, diarrhea, poor appetite, fatigue/sleeplessness and others that may be the result of certain treatments or surgery.
- Psychosocial support services: The pediatric palliative care team has a dedicated social worker who helps address the emotional needs of the patient and family. We also work closely with child life specialists and other practitioners to provide emotional support.
- Pastoral/spiritual healing: Some people find strength, comfort and peace in knowing there’s a “higher power” looking after them. Spiritual guidance can be reassuring in times of great uncertainty. Our chaplains work closely with the pediatric palliative care team and visit all palliative care patients to offer spiritual support. In addition, our onsite hospital chapel at duPont Hospital for Children offers a place of quiet respite from the stresses and anxieties of your child’s condition. This service is available to all children and families day or night.
- Bereavement services: This supportive service is offered to help families, siblings and other people significant in the child’s life grieve in a supportive environment.
In addition to providing healing and quality of life therapies, our pediatric palliative care team works with integrative medicine practitioners to care for your child’s whole body. Along with your child’s regular medical treatment, some of the following may be recommended:
- healing touch
- mind & body meditation
- massage therapy
- music therapy
- art therapy
- pet therapy
The death of a loved one, particularly your child, deserves the strongest support possible. Our professional bereavement program offers that support for all of our parents and families. At duPont Hospital for Children we provide, free of charge the following services:
- parent and sibling bereavement support groups
- individual, couple and family bereavement counseling
- information and referrals
Grief is a normal reaction to a traumatic loss. For many, it creates emotional, intellectual, physical and spiritual turmoil. Grief can negatively impact our behavior, our relationships and our health. If you're interested in any of our bereavement services, or if you'd just like to talk to someone about your needs, please call us at (302) 651-4863.
We’re honored to be able to offer a Palliative and Supportive Care program at duPont Hospital for Children. And we’re proud to know our team of specialists can help children live each day with as much joy and laughter as possible. But we need your help.
By making a contribution to The Thomas P. Ferry Program for Palliative and Supportive Care, you can help us continue this important program to enhance a child’s life and provide support to their family.