Serving children living with life-limiting illnesses and their families.
A network of people caring for children.
And their families.
What is palliative care?
Palliative (pal-lee-uh-tiv) care is comprehensive treatment of the discomfort, symptoms and stress of serious illness. It is a key part of care for children living with a life-limiting illness and an important source of support for their families. The Pediatric Palliative Care Network seeks to improve the quality of life of the entire family through its support and services.
Is palliative care the same as hospice?
No. Hospice gives care and comfort only at the end of life. Palliative care gives care and comfort along the whole course of a child’s disease or illness.
Comfort and care for children with life-limiting illnesses and their families.
Dealing with the diagnosis of a serious illness in a child may be difﬁcult for the entire family. It is important that your child, your family, and you get the support and care you need.
The goal of the Pediatric Palliative Care Network is to improve quality of life for your entire family through its support and services.
What services are available?
Palliative care services may include: pain and symptom management; nursing; assessment and case management; spiritual care; social services; sibling support; volunteer support; respite care; 24 hour nurse on call; complementary therapies such as music, art, massage, and others; and bereavement care if needed. (Complementary therapies vary by provider.) Services are usually provided in the home. Your family may choose which services you believe would be most helpful.
Is my child eligible?
A child must be 18 years old or younger and must live in Massachusetts to receive Pediatric Palliative Care Network services. A physician must state that the child has been diagnosed with a condition that could limit normal life expectancy, such as advanced or progressive cancer; major organ failures; HIV; cystic ﬁbrosis; progressive genetic, neurological or metabolic disorders; or severe cerebral palsy. There are no income limits or citizenship requirements.
Will our regular doctor be involved in my child’s care?
Yes. Your child’s regular doctor and health care team will still care for your child. A child may still receive treatment toward a cure, since new cures may be discovered during his or her lifetime.
How much will care cost?
The services of the Pediatric Palliative Care Network are provided at no cost to eligible children and their families if these services are not already covered by the child’s health care plan.
Who is part of the Network?
The Massachusetts Department of Public Health contracts with community-based organizations throughout the state to form the Pediatric Palliative Care Network. These unique programs are located within licensed hospice organizations because these professionals are experienced in helping to improve quality of life and managing symptoms. However, palliative care is not the same as hospice care.
Everyone in the Pediatric Palliative Care Network plays an important role, including the child, family, physicians, nurses, social workers, counselors and volunteers.
How can my child be referred to the Network?
Anyone can make a referral. Referrals may be made directly by a family; by a child’s physician, nurse or other health care professional; or by others who work with the family. To ﬁnd out which organization serves each city/town, call 1-800-882-1435.
How do I learn more?
- Call the Massachusetts Department of Public Health’s Community Support Line at 1-800-882-1435 or 617-624-6060. Interpreter services are available.
- Call the Hospice & Palliative Care Federation of Massachusetts at 781-255-7077.
- Go to: www.mass.gov/ppcn
“Palliative Care can’t change [her] disease, or give us answers to what lies ahead. What they can do — what they have done — is give us the tools we need to travel this road.”
Palliative care serves the physical, emotional, social and spiritual needs of children living with life-limiting illnesses and their families.
For more information
- TTY 617-624-5992
- Interpreter services available.
- The Pediatric Palliative Care Network (brochure)
This information is provided by the Division for Children & Youth with Special Health Needs within the Department of Public Health.