Palliative Care

What Is Palliative Care?

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 they are 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 want.

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
• child life 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 cost.

Is Palliative Care Right for Your Child?

Deciding whether or not your child may benefit from 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.