When a child is diagnosed with a serious or life-limiting condition, parents deal with the realization that their child will need ongoing, complex medical care for his/her entire life. That child is, upon such a diagnosis, a candidate for palliative care—a continuum of care that provides medical, physical, emotional and pastoral support to (for the purposes of this Toolkit) medically fragile children and their families, regardless of the outcome—whether it is full recovery, a lifelong complex chronic illness, or death from the condition. Palliative care is focused on enhancing the quality of life of that child and family and on helping them to make informed decisions about care options and planning (46).
Palliative care is typically provided to children coping with severe neurological conditions; cancer; human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS); and life threatening heart, lung, or kidney, disease, for example (47).
End of Life Care
End of life care and planning supports and assists individuals with complex, advanced chronic and incurable conditions, and their parents or guardians, to make choices about how they live during the end stages of their condition with a primary focus on pain and symptom management, where a person receives this care as well as place of death–at home, in a hospital or in a hospice.
Establishing an end of life care plan usually begins when the family, child, young adult, or healthcare team recognizes the beginning of the end stages of a progressive, irreversible condition. It informs and helps families to make decisions about end of life options, and whether or not death is feasible at home. The end of life plan continues through the last phase of a child’s life and into bereavement (48).
Hospice care, sometimes called hospice palliative care, helps families and children with medically fragile conditions to cope with terminal illness. It is provided to individuals who are not expected to recover and are anticipated to live for 6 months or less (which is the period of medical coverage designated for such care).
The family—the child’s parents and other members—are at the center of both palliative and especially hospice care, discussing goals, wishes and cultural preferences with the interdisciplinary team of healthcare professionals—physicians, pain management specialists, nurses, social workers, therapists, home health aides, pastoral advisors–providing this care. Hospice care is typically offered at home, in a hospital or in a dedicated hospice facility (48).
Below are some useful sources of information on pain management, palliative care and end of life planning.
Help Starts Here: About Pain: This website/document by the National Association of Social Workers (NASW) describes the many varieties of pain, how to discuss pain with your physician, options and resources and how social workers can help with pain management (49)
Resources for Patients: Things to Ask at the Hospital: This website by Planetree provides a collection of tools and information on helping you discuss your or your child’s pain with your healthcare team.
End of Life Care for Children: An excellent website from the Nemours Foundation with information about care, palliative versus end of life, financial needs and more.
Palliative Care Directory of Providers, offers a state by state directory of hospitals that have palliative care programs (50).
Caring Connections, of the National Hospice and Palliative Care Organization provides a state by state directory of hospices (non hospital programs) and also state-specific Advance Directive forms (51)..
Palliative Care at St. Mary’s Healthcare System for Children offers parents contacts for inquiring about palliative care programs and specific services.
Resources on Preparing for End of Life: The American Cancer Society offers information on what to expect when you or someone for whom you are caring is nearing the end of life, as well as information on hospice care and on coping with the loss of a loved one.