®

Palliative Care for Children 

Support for the Whole Family When Your 

Child Is Living with a Serious Illness

Palliative care provides comfort and 

support to your child and family. 

When a child is seriously ill, each person in the family is affected differently. 

That is why it is important that you, your child, and your family get the support 

and care you need during this difficult time. A special type of care called palliative 

(pal-lee-uh-tiv) care can help. Palliative care is a key part of care for children living 

with a serious illness. It is also an important source of support for their families. 

The information in this brochure will help you understand how your child and 

family can benefit from this type of care.

What is palliative care? 

Palliative care can ease the symptoms, discomfort, and stress of serious illness 

for your child and family. Palliative care can help with your child’s illness and give 

support to your family. It can:

• Ease your child’s pain and other symptoms of illness.

• Provide emotional and social support that respects your family’s cultural values. 

• Help your child’s health care providers work together and communicate with 

one another to support your goals.

• Start open discussions with you, your child, and your health care team about 

options for care.

Palliative care provides comfort for your child. Palliative care can help children and 

teenagers living with many serious illnesses, including genetic disorders, cancer, 

neurologic disorders, heart and lung conditions, and others. Palliative care is 

important for children at any age or stage of serious illness. It can begin as soon 

as you learn about your child’s illness. Palliative care can help prevent symptoms 

and give relief from much more than physical pain. It can also enhance your child’s 

quality of life.

Palliative care gives you and your family an added layer of support. Serious illness 

in a child affects everyone in the family, including parents and siblings of all ages. 

Palliative care gives extra support for your whole family. It can ease the stress on 

all of your children, your spouse, and you during a hard time.

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Palliative care surrounds your family with a team of experts who work together to 

support all of you. It is a partnership between your child, your family, and the health 

care team. This team listens to your preferences and helps you think through the 

care options for your family. They will work with you and your child to make a care 

plan for your family. They can also help when your child moves from one care setting 

(e.g. the hospital) to another (e.g. outpatient care or care at home).

Does accepting palliative care mean our family is giving 

up on other treatments? 

No. The purpose of palliative care is to ease your child’s pain and other symptoms 

and provide emotional and other support to your entire family. Palliative care can 

help children, from newborns to young adults, and their families—at any stage of a 

serious illness. Palliative care works alongside other treatments your child may be 

receiving. In fact, your child can start getting palliative care as soon as you learn 

about your child’s illness.

Palliative care is different from hospice care. 

Your child does not need to be in hospice to get palliative care. Your child can get 

palliative care wherever they receive care: in the hospital, during clinic visits, or at 

home.

Hospice care focuses on a person’s final months of life, but palliative care is 

available to your child at any time during a serious illness. Some children receive 

palliative care for many years.

Some hospice programs require that patients are no longer getting treatments to 

cure their illness, but palliative care is different—it can be given at the same time 

as other treatments for your child’s illness.

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Palliative care helps your child live a more comfortable life.

Palliative care can provide direct support for your child by providing relief from 

distressing symptoms, such as:

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• Pain

• Shortness of breath

• Fatigue

• Depression

• Anxiety

• Nausea

• Loss of appetite

• Problems with sleep

Palliative care can help your child deal with side effects from medicines and 

treatments. Perhaps most important, palliative care can help enhance your 

child’s quality of life. For example, helping to cope with concerns about school 

and friends might be very valuable to your child.

Palliative care may also include direct support for families such as 

assistance with:

• Including siblings in conversations.

• Providing respite care for parents to be able to spend time with their other 

children.

• Locating community resources for services such as counseling and support 

groups.

Palliative care is effective. Scientists have studied how palliative care can help 

children living with serious illnesses. Studies show that patients who get palliative 

care say that it helps with:

• Pain and other distressing symptoms, such as nausea or shortness of 

breath.

• Communication between health care providers and family members.

• Emotional support.

Other studies show that palliative care:

• Helps patients get the kinds of care they want.

• Meets the emotional, developmental, and spiritual needs of patients.
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Palliative care focuses on the 

needs of your child and family.
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How do you know if your child or family needs 

palliative care? 

Children living with a serious illness often experience physical 

and emotional distress related to their disease. Emotional distress 

is also common among their parents, siblings, and other family 

members. If your child has a genetic disorder, cancer, neurologic 

disorder, heart or lung condition, or another serious illness, 

palliative care may help reduce pain and enhance quality of life. 

Ask your child’s health care provider about palliative care if your 

child or any member of your family (including you): 

• Suffers from pain or other symptoms due to serious illness.

• Experiences physical pain or emotional distress that is NOT 

under control.

• Needs help understanding your child’s health condition. 

• Needs support coordinating your child’s care.

Palliative care can start as soon as your child 

needs it. 

It’s never too early to start palliative care. In fact, palliative care 

can take place at the same time as other treatments for your 

child’s illness. It does not depend upon the course or stage of 

your child’s illness.

If you feel your child, your family, or you could benefit from 

palliative care, ask your child’s health care provider about getting 

a referral for palliative care services. There is no reason to wait. 

The sooner you and your child seek palliative care services, the 

sooner a palliative care team can help your family manage the 

pain and other symptoms, and emotions that may come with a 

serious illness.
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The palliative care team 

works with you, your child, 

and your care team.

Together with your child’s health care providers, palliative care 

professionals will work with you and your child to make a care 

plan that is right for your child, your family, and you. The team 

will help you and your child include pain and other symptom 

management into every part of your child’s care. 

Palliative care experts spend as much time with you and your 

family as it takes to help you fully understand your child’s 

condition, care options, and other needs. They also make sure 

your child experiences a smooth transition between the hospital 

and other services, such as getting care at home. 

Your team will listen to your preferences and work with you 

and your child to plan care for all of your child’s symptoms 

throughout the illness. This will include care for your child’s 

current needs and flexibility for future changes.

Your child’s palliative care team is unique.

Every palliative care team is different. Your child’s palliative care 

team may include:

• Doctors

• Nurses

• Social workers

• Pharmacists

• Chaplains

• Counselors

• Child life specialists

• Nutritionists

• Art and music 

therapists 
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How can our family get palliative care?

The palliative care process can begin when your child’s health 

care provider refers you to palliative care services. Or, you or 

your child can ask your provider for a referral if you feel that 

palliative care would be helpful for your child, your family, or 

yourself.

If we start palliative care, can my child still 

see the same primary health care provider?

Yes. Your child does not have to change to a new primary 

health care provider when starting palliative care. The palliative 

care team and your child’s health care provider work together 

to help you and your child decide the best care plan for your 

child.

What if my child’s health care provider is 

unsure about referring us? 

Some parents are afraid they might offend their child’s current 

health care providers by asking about palliative care, but this 

is unlikely. Most health care providers appreciate the extra 

time and information the palliative care team provides to their 

patients. Occasionally, a clinician may not refer a patient for 

palliative care services. If this happens, ask for an explanation. 

Let your child’s health care provider know why you think 

palliative care could help your family.

Who pays for palliative care?

Many insurance plans cover palliative care. If you have 

questions or concerns about costs, you can ask your health 

care team to put you in touch with a social worker, care 

manager, or financial advisor at your hospital or clinic to look at 

payment options. 
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Palliative care can begin at 

any time and be provided 

alongside other treatments 

your child may be receiving.
Where can my child get palliative care?

Your palliative care team will help you to know what services are available in your 

community. Your child and family may receive palliative care in a hospital, during 

clinic visits, or at home. You and your child will likely first meet with your palliative 

care team in the hospital or at a clinic. After the first visit, some visits may still 

occur in the clinic or hospital. But many palliative care programs offer services at 

home and in the community. Home services can occur through telephone calls or 

home visits.

If palliative care starts in the hospital, your care team can help your child make a 

successful move to your home or other health care setting.

Home may feel most comfortable and safe to you and your child. Depending on 

your child’s condition and treatment, the palliative care team may be able to help 

you find a nursing agency or community care agency to support palliative care for 

your child at home. 

How can my child’s pain be managed?

The palliative care team can bring your child comfort in many ways. Treating pain 

often involves medication, but there are also other methods to address a child’s 

discomfort. Your child may feel better with changes like low lighting, comfortable 

room temperatures, pleasant smells, guided relaxation, and deep breathing 

techniques. Your child may welcome additional activities like video chats, social 

media, soothing music, and massage and art therapy that may help decrease pain 

and anxiety.

If your child has an illness that causes pain that is not relieved by drugs like 

acetaminophen (Tylenol®) or ibuprofen (Motrin® or Advil®), your child’s palliative 

care team may recommend trying stronger medicines. There is no reason to wait 

before beginning these medications. Should your child’s pain increase, the dose 

may be safely increased over time to provide relief.

Pain relief can be offered in a hospital, at home, or in other healthcare settings. 

Your palliative care team will partner with you and your child to learn what is 

causing discomfort and how best to handle it.

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Don’t wait to get your 

child and family the extra 

support they deserve. 
Talk to your loved ones and health care team 

about palliative care.

If your child wants palliative care, or if you think palliative care 

could be helpful to any member of your family, ask for it now. 

Talk with your child’s health care provider about palliative care.

To see whether a hospital in your area offers a palliative care 

program, visit the Palliative Care Provider Directory of Hospitals 

at http://getpalliativecare.org/.

For more information about palliative care, please visit 

http://www.ninr.nih.gov/conversationsmatter.

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National Institute of Nursing Research

National Institutes of Health

http://www.ninr.nih.gov

July 2015

NIH publication #15-NR-8003

NIH...Turning Discovery Into Health®