When a child is diagnosed with a serious or life-threatening condition, everything changes. Parents must not only face the difficult realization that their child is ill and may be suffering, but also struggle with the task of providing intense, complex, and ongoing medical care.
Palliative (pronounced pal-lee-ay-tiv or pal-yah-tiv) care provides physical, emotional, and spiritual support to sick children and their families. Through a team of medical personnel — including doctors, pain management specialists, nurses, social workers, and therapists — palliative care helps prevent and relieve pain and suffering while also easing stress, anxiety, and the fear associated with serious illness.
The goal of palliative care is to enhance the quality of life for a child and family and to assist families in making 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; human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS); and heart, lung, kidney, or liver disease.
Palliative Care vs. Hospice Care
Many people confuse palliative care with end-of-life care, or hospice care. Although hospice care and palliative care programs share a similar goal of providing symptom relief and pain management, the two are not the same:
Palliative care can be provided at any time during a person's illness, even from the time of diagnosis. It is not dependent on prognosis (a patient's outcome) and may be provided 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 that focuses solely 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.
Palliative care is designed to meet the unique needs of each child and family. Families can tailor their child's care, and receive as much or as little help as they want. The palliative care teams might consist of:
palliative care doctors who provide direct medical care and manage the treatment of physical symptoms, such as pain, nausea, fatigue, shortness of breath, and difficulty 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 navigate 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 and occupational therapists who help children feel more physically comfortable and teach them how to maximize 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
nutritionists 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.
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 by calling 1-800-658-8898.
A Parent's Role
If you decide that your child would benefit from a palliative care program, remember that the services offered aren't just for your child, they're for you, too. Family members caring for seriously ill children face numerous challenges, and palliative care programs can help ease some of these burdens.
While the palliative care team is important, parents and other caregivers play an equally important role in a child's health. Because you know your child better than anyone else, you are a partner with the palliative care team as you all work toward the same goal — providing the best quality of life for your child for as long as possible.