what is palliative care?

Pediatric palliative care is care designed to meet the unique and special needs of children living with life-threatening conditions such as cancer, muscular dystrophy, cystic fibrosis, severe brain problems, complications from prematurity and birth defects and rare disorders, among other conditions. Unlike many other forms of medical care, pediatric palliative care recognizes that everyone in the family is affected when one member is ill. Therefore, pediatric palliative care focuses on the needs of the patient and family: parents, brothers and sisters and other members of the members of your suppport system. The focus of pediatric palliative care is to enhance the quality of life for all involved, in large part by preventing and alleviating suffering using the skills and knowledge of a specialized care team that includes doctors, nurses, social workers, chaplains, child life therapists, and others. Pediatric palliative care focuses on pain and symptom management, information sharing and advance care planning, practical, psychosocial and spiritual support, and coordination of care.

What are the goals of pediatric palliative care?
Palliative care for children aims to improve quality of life for the patient and the family. This is done through expert management of pain and other physical symptoms such as shortness of breath, nausea, vomiting, and anxiety. It is also done through emotional, spiritual and other support services to help the patient and family cope with the roller coaster of emotions that result from dealing with a serious illness or condition. Grief begins at the time of diagnosis. When acknowledged and discussed, it can be managed and coping with the new normal can begin. Siblings need information and support, parents need time to rest and to maintain their relationships and address the financial and practical strains that come with an ill family member while still ensuring the best care possible for the ill child. Palliative care for children can help find solutions that work for you and your family.

How is pediatric palliative care different from adult palliative care?
Because the causes and treatment of illness and death for children are so different from those of adults, pediatric palliative providers need to have a different knowledge base than those caring for adult patients. Further, children and their families often have different opinions about illness and the possibility of death than adult patients and their families - these need to be addressed as well. Physicians and parents are faced with difficult decisions regarding the benefits of medical technology versus the burdens and their impact on quality of life. Parents, patients, physicians and other caregivers, must work closely together to make decisions that best benefit your child while holding true to the values of your family.

When is palliative care appropriate for my child?
Pediatric palliative care ideally begins when you first receive the news that your child has a life-threatening condition. It can be provided along side efforts to cure or prolong life, as appropriate and desired. The American Academy of Pediatrics supports an integrated model of palliative care "in which the components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death." Reserving palliative care for children who have exhausted every curative treatment and are dying would mean that many other children would miss out on the benefits that palliative care can offer. Including children who have a life-threatening illness or condition but are still receiving curative treatment ensures that all children who can benefit from palliative care have access to it.

If you think your child and your family might benefit from palliative care, talk with your pediatrician about your options and explore this Web site to learn more.

For more information about palliative care, visit:

The World Health Organization (WHO)
This page provides the WHO definition of palliative care including palliative care for children.

American Academy of Hospice and Palliative Medicine
The American Academy of Hospice and Palliative Medicine is the professional organization for physicians who specialize in hospice and palliative medicine and doctors, nurses and other health professionals who are interested in the specialty. This Web site is intended to answer your questions about palliative and hospice care and to provide resources such as legal documents, disease resources and locator tool to help you find a certified hospice and palliative medicine physician.

Center to Advance Palliative Care
The Center to Advance Palliative Care is a national organization dedicated to increasing the availability of quality palliative care services for people facing serious illness.  This Web site will help you better understand palliative care and whether it is right for you and your family.  It also provides helpful articles and stories of palliative care.

National Hospice and Palliative Care Organization - Caring Connections
Caring Connections can bring you together with other working to help improve the way people experience the final years and months of life. This Web site features free community outreach resources to help educate you and engage your community around pediatric end-of-life care and support for families with a seriously ill child.

Adapted from: Palliative Care for Children Pediatric Palliative Care by Angela Morrow, RN, About.com

 

The Section on Hospice and Palliative Medicine nor the American Academy of Pediatrics are responsible for the information that external Web sites post or link to, nor do they represent official endorsement of the Web sites' affiliation or opinions.