Palliative care is largely misunderstood. It’s an area of healthcare concerned with prevention and relief of suffering. Many assume it’s for people at the end of life, which it often is, but it's also relevant to people of any age in any disease state, whether the illness is curable or not. In addition to medications and traditional healthcare therapies, practitioners are highly integrative- employing social, psychological, physical, and spiritual components to their care.
A recent study published in The Journal of Pediatrics showed that there is a steady increase in the number of children living with a life limiting condition, and often need specialized palliative care for many years. There are models that are addressing these needs, and bringing children together in smaller group homes where their holistic needs can be met. However, these types of services can be few and far between.
The concept of palliative care has been gaining more attention in the United States over the past decade; the specialized needs of children should not be forgotten. According to the National Hospice and Palliative Care Organization (NHPCO), some of the most important unmet needs in pediatric palliative care include: educational access, adaptive equipment, more in-depth emotional support for siblings and mechanisms for continuity of care, including assistance 24/7 and in home settings.
To read NHPCO’s Pediatric Palliative and Hospice Care in America report, please click here.