What is Palliative Care
Pediatric Palliative Care
Children are supposed to be healthy and energetic, with the promise of a full life before them. But when illness threatens that future, everyone involved feels the impact deeply.
That's where pediatric palliative care can help.
Like palliative care for adults, it focuses on comfort. It works to relieve physical, emotional, social, and spiritual suffering in facing curative treatments. But palliative care for children differs from adult care in some important ways.
Course of Illness / Resilience
Children are resilient. Serious illness in childhood is rare and the course of disease often can't be predicted. A child may recover from a serious illness after seeming very near to death. Even for a child with a condition that someday becomes fatal, there may be times when he or she lives a “normal” life, in between hospital stays and illness. Both caregivers and parents often choose to take otherwise “heroic” steps in hopes of reversing a serious disease.
Understanding disease
Children range widely in their ability to grasp the physical and spiritual meanings of disease and death. Young children often can't understand why they have to go through painful procedures needed to diagnose and treat their physical condition.
Identifying and Treating Pain and Other Symptoms
Infants and children often can't express their specific discomforts. So, a major task of pediatric palliative care is to identify these symptoms and figure out how to treat them. Many factors make treating children different from treating adults. For one, children's bodies process medicines in ways that differ from how adults' bodies do; also, dosages are based on the child's weight. Both of these concerns make prescribing medicine for children a special skill. Also, children often can't swallow pills. Thus, pediatric palliative care teams work with pharmacies to make syrups, dissolvable capsules, or skin patches that help make medicines easier for children to take.
Special Concerns of the Young Family
When a child is diagnosed with a serious condition, the life of his or her family changes. Because many childhood illnesses are rare, children and their parents often must travel far from home to seek help from centers that specialize in treating these conditions. In so doing, the family leaves behind its support system, and often its sources of income. Young families especially may quickly use up savings and sacrifice employment to be with a child in the hospital. The sick child's siblings are often forgotten members of the family during the times their parents focus their attention on the ill one.
Hope / Protection / Disclosure
Hope is an important part of palliative care. Preserving hope and protecting the patient from bad news frequently occurs in the face of serious illness. When the patient is a child, the urge to protect him is stronger than when the patient is a mature adult. Oftentimes parents and even medical caregivers hesitate to discuss a serious prognosis with a child patient in hopes of preserving hope. However, studies show that even very young children can understand the seriousness of a disease, and open communication actually helps alleviate fears of the unknown. Pediatric palliative care providers are trained to help children express their emotions and cope through play, music, or other modalities.
Decision-making
Although parents must legally consent for medical care on behalf of their child, the concept of assent is important in pediatric palliative care. Children as young as seven to 10 years of age may be able to express informed opinions about their medical care. Adolescents especially expect that they should have a say in what procedures they do or do not undergo. Sometimes the pediatric palliative care team can help clarify or enhance a child or teenager's understanding of their condition and help include them in discussions about treatment choices.
In pediatric palliative care we add life to the years. Children living with serious medical conditions can still be children, and palliative care teams can help.
