Contrary to popular belief, palliative care is comprised of more than just keeping patients comfortable until they die; it involves treating symptoms, managing pain and ensuring a quality of life that is as good as possible.
Although modeled after the principles of adult palliative care, pediatric palliative care is uniquely challenging in the following three ways, as outlined by The Wall Street Journal.
1. Unlike with adults, and particularly elderly adults, it is “outside the natural order of things for children to be ill,” which can take a greater emotional toll on families, according to Joanne Wolfe, MD, the director of the Pediatric Advanced Care Team at the Boston Children’s Hospitals. Many adults receiving palliative care are still able to make decisions regarding their treatments and when treatments should stop, whereas the same decisions for young children have to be made by parents or guardians. Pediatric palliative care providers have to help the families of patients make very difficult choices.
2. Because many children receiving palliative care have complex genetic or neurological diseases, care typically involves a greater number and variety of specialists than for adults, most of whom have cancer. Also, medical advances have extended the lives of children with terminal conditions, meaning care has to be offered for longer. Pediatric palliative care providers are faced with the challenge of clarifying communication and decision making with numerous specialists and the families of the patients.
3. Many critically ill children are too young or impaired to clearly describe their symptoms or pain to physicians. Additionally, many pain-relieving drugs are not suitable for children or there is not enough medical research on their effects to know if the drugs are safe. Pediatric palliative care providers are forced to use trial and error when trying treatments, drugs or other interventions.
More articles on palliative care:
Children’s Hospitals and Clinics of Minnesota opens pediatric pain clinic
End-of-life care getting worse, study shows
William W. Backus Hospital, Center for Hospice Care partner for palliative care
