Pediatric Palliative Care: An active and total approach to care, embracing physical, emotional, social and spiritual elements, for children who face a progressive, life-threatening condition and their families. It focuses on quality of life for the child and support for the family. It also includes the management of distressing symptoms, provision of respite, and care through death and bereavement.
Our Pediatric Palliative Care (PPCN) program is designed to complement existing services to meet the needs of eligible children with life-limiting illnesses and their families or guardians. For the most part, these services are provided in the home and are appropriate for children with a wide range of life-limiting illnesses, even when cure remains a possibility. The PPCN program supports the child and family with services designed to achieve an improved quality of life by meeting the physical, emotional and spiritual needs experienced during the course of illness, death and bereavement.
Pediatric palliative care “is designed to enhance choice, relieve suffering, and ensure the best quality of care during living, dying and grieving.” We support the child and family to accomplish these goals in accordance with their values, needs and preferences by providing access to a full range of consultative and direct care palliative services. Our services complement those rendered by the child’s primary care provider who retains professional responsibility for the child’s plan of care. Examples of these services include but are not limited to skilled pain and symptom management, counseling for the child and family, spiritual care, advance care planning, referrals to other community services, short-term respite care, and bereavement care for the family.
Life-Limiting Conditions appropriate for pediatric palliative care include but are not limited to:
- Those children who have conditions from which they could die, e.g.: cancer
- Those children who have progressive conditions from which they are certain to die, e.g.: neurodegenerative diseases like Tay-Sachs, Spinal muscular atrophy (SMA), Duchene’s Muscular Dystrophy, etc.
- Those children who have congenital or genetic conditions that are likely to cause their death, e.g.: Trisomy 13, anencephaly
- Those children who have had a traumatic injury or event which causes them to be fragile and at risk for death, e.g.: severe birth asphyxia, accidental trauma, shaken baby syndrome
We provide:
Pain and Symptom Management. The child should be as symptom-free as possible. Pain and/or other symptoms should be managed to achieve the greatest possible level of comfort.
Family-Centered Care. The unit of care is the child and family, with the family defined as those individuals with whom the child has a significant relationship. Decisions about care are made by the child, to the extent the child is able, and family, aided by professional caregivers. PPCN respects and maintains the dignity and wishes of each child and his or her family.
Interdisciplinary Approach. PPCN services are planned and delivered by an interdisciplinary team. Members of the hospice’s interdisciplinary team must include a nurse, social worker, chaplain, and volunteers under professional supervision. PPCNN services are both consultative and direct.
Collaboration with Pediatric Providers. PPCN and participating hospices recognize the importance of the primary care provider/child relationship as integral to the plan of care. Respect is shown for the role and needs of other providers caring for the child and family.
Sensitivity to Culture-Specific Needs. The cultural background, concerns and needs of the family are elicited, documented and addressed by the PPCN staff. Translation services are available for non-English speaking families.
Who is eligible?
- All children less than 19 years old, who are determined by a physician to have a potentially life-limiting illness, are eligible for the program.
- All life-limiting diagnoses are included. .
- There are no restrictions as to the life expectancy of the child.
- Children in the PPCN program may continue to receive care directed at cure.
- Admission to PPCN does not preclude the child and family from treatment choices or hopeful, supportive therapies
- Children are admitted to the program without regard for diagnosis, gender, race, creed, age or ability to pay.