Palliative (pronounced pal-lee-AY-tiv or pal-YAH-tiv) care provides physical, emotional,
and spiritual support to sick children and their families. A medical care team —
including doctors, pain management specialists, nurses, social workers, and therapists
— helps prevent and relieve pain and suffering while also easing stress, anxiety,
and the fear associated with serious illness.
Palliative care is not to be confused with end-of-life care or hospice care,
which provides care for patients who are not expected to recover. The goal of palliative
care is to enhance the quality of life for a child and family during a serious illness
and to help families make important decisions about their child's care.
Who Needs Palliative Care?
Any child who has a serious, complex, or life-threatening condition — whether
he or she is expected to make a full recovery, live with a lifelong chronic illness,
or die from the condition — may be a candidate for palliative care.
Palliative care is helpful for children coping with diseases like cancer; neurological
conditions; and heart, lung, kidney, or liver disease.
How Is Palliative Care Different From Hospice Care?
Many people confuse palliative care with end-of-life care, or hospice care. Hospice
care and palliative care programs share a similar goal of providing symptom relief
and pain management. But they're not the same:
Palliative care can happen at any time during a person's illness,
from diagnosis on. It does not depend on prognosis (a patient's outcome) and can be
given along with life-prolonging or curative care. Palliative care can be provided
in hospitals, outpatient settings, and at home.
Hospice care is a specific type of palliative care. It focuses
on providing care to patients who are not expected to recover. It is intended for
people who are no longer getting treatment for their medical condition and who are
expected to live for 6 months or less. Hospice care may be provided at home, in the
hospital, or in a hospice facility.
What Services Are Offered?
Palliative care is designed to meet the unique needs of each child and family.
Families can tailor their child's care, and get as much or as little help as they
The palliative care teams might include:
palliative care doctors who provide direct medical care and manage
the treatment of physical symptoms, such as pain, nausea, tiredness, shortness of
breath, and trouble sleeping
nurses who assess the complex needs of the patient and family,
facilitate communication with the care team and within the family, and coordinate
care among the care team
social workers who offer counseling, help families manage the
health care system, and provide information about and referrals to other resources
childlife specialists who address developmental needs, help children
understand their condition and participate in decision-making when appropriate, and
help maintain a sense of normalcy
physical therapists and occupational therapists who help children
feel more comfortable and teach them how to best use their physical abilities
art and music therapists who help children explore and express
feelings through music, art, poetry, and other creative outlets
chaplains and other spiritual advisors who provide support and
counseling related to spiritual beliefs; they can also provide grief counseling
massage therapists who promote relaxation, help patients and
families manage stress, and provide pain relief
dietitians who set up healthy meal plans and offer guidelines
for nutritious eating
home health care aides who help patients transition from hospital
care to home care and assist with home care needs
Generally, each hospital has its own type of palliative care team. Some teams even
include community volunteers who want to help in any way they can.
Who Pays for Palliative Care?
Most health insurance plans cover all or part of palliative care, and many palliative
care services are supported by charitable donations. If the cost of palliative care
is a concern, a social worker might be able to help provide guidance on covering the
Is Palliative Care Right for Your Child?
Deciding whether or not your child needs palliative care is a personal decision
that can only be made after you've spoken to your health care provider, considered
your child's and your family's individual needs, and determined what services are
available in your area.
To find services, talk to your health care provider or a representative from your
local hospital. You also can research local palliative care services through the National Hospice and Palliative Care Organization
online or by calling 1-800-658-8898.
How Can I Help My Child?
If your child would benefit from a palliative care program, remember that those
services can help you too. Family members caring for seriously ill children face many
challenges, and palliative care programs can help with some of these.
Parents and other caregivers also play an important role in a child's health. You
know your child better than anyone else, so you're a partner with the palliative care
team. You all have the same goal — providing the best care for your child.