Palliative Care

Palliative [PAL-ee-uh-tiv] care is medical care focused on improving quality of life for patients facing a serious illness and their families. A key emphasis is managing pain and other symptoms, such as nausea and sleep problems. Palliative care also focuses on improving planning and communication among the care team, and addressing emotional and spiritual needs.

Palliative care can be given at different levels:

• Primary palliative care is woven into regular hospital care. It’s part of what your child’s doctor, nurses, and other care providers do every day to control your child’s pain and help your child feel more comfortable. It can include:
• Talking about your child’s diagnosis, treatment options, and plans for the future.
• Finding emotional or spiritual support for your child or your loved ones.
• Coping with concerns about school friends.
• Getting special services like art or music therapy, or finding ways for your child to relax and play.
• A palliative care consult is specialized medical care for people with serious illness. It brings in providers with advanced training to partner with you, your child, and your other doctors and nurses. The team can provide extra support for treating complex symptoms, easing physical pain, and helping your child and your family manage the stress of hospitalization and illness. Your palliative care team will never assume to know what kind of care your child wants — the team will talk in depth with you and your family to make sure you are guiding care at every point.

Palliative care can be used alone or given along with treatments for an illness or to prolong life. At all levels and stages, palliative care is about improving the quality of a person’s life and supporting the decisions that they make about care.

Palliative care can be provided in a hospital, during clinic visits, or at home. Many insurance plans cover the cost.

The risks and side effects of palliative care depend on the specific treatments given for your child’s condition. Your child’s healthcare provider can discuss the risks and side effects with you.

Palliative care services help to:

• Manage pain and other symptoms better
• Explain a diagnosis to a child
• Explain medical terms and healthcare options
• Reduce stress and provide emotional support for patients and their families
• Find ways for the child to relax and play
• Take care of concerns
• Involve a child in decisions about their care
• Transition among different healthcare settings more smoothly
• Identify community resources

You can prepare for palliative care services by:

• Talking to your child, and other loved ones, about how palliative care can help them.
• Discussing your questions with your child’s healthcare provider.
• Finding out what healthcare facilities in your area offer palliative care services.

Palliative care services in the hospital can support your child’s care in all areas. A discussion with your child’s palliative care provider can take many forms, but in general, you can expect the following:

• Team-based approach. The team will include you and your child, your current doctor and care providers, and specialists in palliative care.
• Specialized knowledge and experience. Palliative care specialists can address the more complex problems that come with a serious illness. They serve as resources for the rest of the team.
• Improved coordination and communication. As you probably know, a medical problem can make life complicated. A palliative care consult can help make your child’s care — and your child’s life — more organized and less confusing. For example, while your child is in the hospital the team can help arrange for healthcare and other services your child might need afterward.
• Alignment with your child’s desires and priorities. A consult gives you and your child a chance to reflect on your goals. It can also help ensure that the care your child receives matches your child’s current needs and values. Your palliative care team will never assume to know what kind of care your child wants — the team will talk in depth with you and your family to make sure you are guiding care at every point.
• Focus on quality of life in all areas. Your child’s life is more than their medical problems or their treatment. From practical concerns to spiritual needs, a palliative care team can help your child and your family feel less overwhelmed. You can focus on what’s most important to you.

Your child’s palliative care team will consist of people with special training and certifications who will work with your child and your current doctor and other providers. Each team member plays a different role, and you may meet with one or several of these specialists:

• Physician specialist. This doctor has received specialized training in palliative care after medical school. This doctor may have even completed a fellowship in Palliative Care or be Board Certified. They can serve as a resource to your other doctors about the best course of treatment and help ensure that your child understands their condition and are involved in care plans.
• Nurse practitioner or registered nurse. This person may be the first member of your child’s palliative care team you meet. With special training in palliative care, this team member can help with goal setting, family meetings, advance care planning, and any other needs. A nurse practitioner may have expanded responsibility for medication and symptom management.
• Social worker or child life specialist. A palliative care social worker or a child life specialist is licensed in social work and has the training to help meet the social and psychological needs of children and families. They can also help coordinate care and manage transitions from one care setting to another.
• Chaplain. The chaplain’s work focuses on spirituality, not religion, and on helping you and your family begin to find meaning in your child’s experience. He or she is trained to help with the nonphysical aspects of your child’s care.

Follow-up options for palliative care depend on your child’s unique situation. Your palliative care team will let you know:

• If palliative care can be provided in a different setting, such as at home, during clinic visits, at a nursing care center, or in a hospital.
• About community resources available to help your child and family.

Initiative for Pediatric Palliative Care: Frequently Asked Questions
National Institute of Nursing Research: Pediatric Palliative Care at a Glance
World Health Organization: WHO Definition of Palliative Care