To Your Health: Palliative care eases stress of child’s illness
By Meggan Mikal June 11, 2013 4:14PM
Updated: July 13, 2013 6:22AM
Pediatric palliative care is specialized medical care for children with complex medical conditions. It focuses on providing relief from the symptoms, pain and stress of a serious illness.
The goal is to improve the quality of life for a child and his family and to allow the child to grow and develop in the midst of the medical diagnosis.
Pediatric palliative care is provided by an interdisciplinary team of doctors, nurses, child life specialists, chaplains and social workers who work with the child’s other doctors as an extra layer of support. It is appropriate at any age and at any stage of an illness and can be provided along with treatments that are focused on a cure.
Pediatric palliative care addresses serious medical conditions including genetic disorders, cancer, prematurity, neurologic disorders, heart and lung conditions.
It relieves the symptoms of these diseases, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. In short, it helps the child and family gain the strength to carry on with daily life.
People who care for children with complex medical conditions know that children’s needs are very different from those of adults. Children experience a variety of complex illnesses that are not seen in adults. Even illnesses that are seen in adults can act differently in children because of their unique anatomy and physiology.
Children are growing and developing as they face illness. Therefore, all specialized medical care, including palliative care, must be tailored to meet those needs.
The pediatric palliative care specialists focus on the whole child and how the child’s illness and treatment affect the entire family. The team supports the child and family every step of the way, not only by managing symptoms, but also by helping people understand all of the treatment goals and options. They assist with communication and coordination of care throughout the child’s trajectory of illness and across all health care settings.
It is best to start palliative care as early as possible. This benefits the child and the family by relieving the symptoms, pain and stress that can make facing a serious illness so difficult.
Working with the primary doctor, the palliative care team provides an extra layer of:
Close communication and collaboration
Expert management of pain and other symptoms
Help navigating the health care system
Guidance with difficult and complex treatment choices
Emotional and spiritual support
The palliative care team takes the time to get to know the child and family. Because every child and family have individual needs, they may meet and work with different members of the team at different times. One of the team’s main goals is to make sure that everyone considers the family’s situation and how to make their journey a bit easier.
Using a team approach, pediatric palliative care helps the child and family caregivers cope with the challenges of illness and hospitalizations by relieving the symptoms of the disease or treatments. The team also focuses on supporting the people around the child, including siblings, grandparents and friends. They provide the child’s medical team with resources for medical care at home or closer to home. They also coordinate care among the child’s many doctors and improve communication between the family and the primary medical team.
Many caregivers struggle with how to talk to their children about illness. The palliative care team can provide guidance, resources and connections with appropriate community resources for anyone involved in a child’s life, including the school and community. They explain ways to care for children in unique circumstances and in a developmentally appropriate manner.
For parents in particular, dealing with the complex medical system can be a difficult task. Many seriously ill children have many medical providers taking care of them, and receive treatment in more than one location. This can add to parents feeling overwhelmed and confused by the amount of information they are given. With the close communication and advocacy that a palliative care team provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of the entire family.
Mikal is a nurse with the Pediatric Palliative and Supportive Care Service at Advocate Children’s Hospital’s Oak Lawn campus.