There are literally thousands of children across the United States (and the world) who suffer from many different types of chronic or terminal illnesses. According to the National Hospice and Palliative Care Organization’s 2015 study, the leading causes of death in infants are congenital malformations and chromosomal abnormalities and disorders tied to low birth weight and short gestation. Many other children die from maternal complications, SIDS and complications of the placenta, cords or membranes.
There were also 18,888 deaths among children ages 1-19 in 2013, which means 24 out of every 100,000 kids in this age group died that year. Malignant neoplasms are still the top cause of disease-related death in childhood, with children between the ages of 15 and 19 comprising most of the deaths in this group.
A recent study by the Center to Advance Palliative Care also cited the American Academy of Pediatrics to say there are more than 400,000 children and families estimated to be living with life-threatening or otherwise serious health conditions in the U.S. Also, it is believed that as many as 17 million adults are working as caregivers for severely ill children.
One incredibly effective way to treat children affected by serious diseases is through pediatric palliative care. This holistic and compassionate approach focuses on addressing not only kids’ physical needs, but also their emotional, social and spiritual needs (which can vary substantially from one child to another, depending on their upbringing and other factors).
One quote that appeared in a 2014 article by The New Yorker’s Jerome Groopman described pediatric palliative care in a very humane way:
“It’s like when you’re filling in concrete. The transplanters are the people who put the layer down, then PACT (Pediatric Advanced Care Team) are the people who go after and fill the holes, so the whole thing doesn’t start to crumble,” said Gwen Lorimier, then an 11-year-old patient at Boston Children’s Hospital. “But if it does start to crumble they’re the people who actually go with the hard hats and fix it.”
Here is a guide to starting the pediatric palliative care process to ensure your loved young one receives adequate attention from highly-educated professionals.
Receiving a Request Referral
One of the first important steps to take as part of the palliative care process is to receive a referral from a physician or physician designate to get your child proper care. Children and families also sometimes have the option of filing a “self referral” and submit a request for evaluation prior to receiving pediatric palliative care.
Meeting With a Palliative Care Provider Who Will Conduct an Assessment
A palliative care provider representative will then visit you and your child in order to perform an assessment and begin enrollment shortly thereafter.
Enrollment And Treatment & Symptom Management
Once a child is enrolled in palliative care, pain and symptom management typically begins. This entails working toward improving the overall quality of life of someone afflicted with a terminal disease or life-limiting illness, like cancer by addressing the symptoms and side effects of said illness.
Speak to a Professional Palliative Care Agency
Speak to the experienced professionals at Kids Care of the Rockies to learn more about how the pediatric palliative care process can help your child receive comprehensive care. Although based in Englewood, Colorado, Kids Care of the Rockies also provides support for children and families located in Adams, Arapahoe, Broomfield, Boulder, Elbert, Denver, Douglas and Jefferson. Kids Care’s team of highly educated professionals includes physicians, nurse practitioners, pediatric care nurses, certified nursing assistants, licensed clinical social workers, massage therapists, music therapists, child life specialists and chaplains. These employees will work tirelessly to ensure you and your child receive all of the thorough care and support necessary to improve overall quality of life.
Among the types of chronic diseases and conditions Kids Care’s professionals have experience treating are cancer, autoimmune disorders, congenital anomalies (including birth defects), heart disease, lung disease, neurological diseases, renal failure and trauma. The symptoms treated as part of the palliative care process include depression and anxiety, shortness of breath, pain and fatigue, nausea and vomiting, delirium (agitation), diarrhea and constipation, swelling, and coughing, congestion and other respiratory problems.
Pediatric palliative care is also usually covered by Medicaid and most private insurance companies and at Kids Care of the Rockies, it includes 24/7 on-call support, so you don’t ever have to wait for you and your child to receive any kind of care.
Kids Care of the Rockies, which also provides hospice care for elderly adults, is committed to ensuring every sick or injured person and his or her family receives extensive love and support during difficult times. You’ll hardly find a more compassionate organization in your area than Kids Care of the Rockies. Call them today at (303) 416-6377 or contact them online for more information.