Frequently Asked Questions

What is Palliative Care?

According to the American Academy of Hospice and Palliative Medicine, palliative care is comprehensive, specialized care provided by an interdisciplinary team to patients and families living with a life-threatening or severe advanced illness expected to progress toward dying and where care is particularly focused on alleviating suffering and promoting quality of life. Palliative care includes the management of pain and other symptoms and addresses the physical, mental, psychological, social, and spiritual needs of of people living with life-threatening or terminal conditions.  Palliative care aims to provide patients and their families with the best quality of life, consistent with their goals of care and values. 

In reference to Pediatric Palliative Care, the universal principles of care are as follows: 1) palliative care programs should be available to children who have life-threatening diseases, not just those in whom death is imminent; 2) care should be available to children whether they are at home or in the hospital; 3) life-prolonging treatment and palliative care are not mutually exclusive; 4) interdisciplinary palliative care teams should be available for the child 24 hours a day; 5) the unit of care is the child and family; 6) respite care should be available; and 7) bereavement care should be available for families of children who die (Korones, D.N, 2007). 

When should palliative care begin?

The Circle of Life Children's Center and the American Academy of Pediatrics support an integrated model of palliative care which is offered at diagnosis of illness or medical condition and continues throughout the course of illness, whether or not a cure is attained. Palliative (comfort) care should not be reserved strictly for children who are dying. All children who have life-limiting and/or life- threatening medical conditions should be afforded palliative care services beginning at the time of diagnosis.  The time of diagnosis may range between the prenatal period and early adulthood.

Is it true that children feel pain less intensely than adults?

This belief was widely accepted as true at one time, but has since been proven to be false.  Children feel pain but may be unable to communicate the location, intensity, or describe the feeling adequately.  Medical professionals work hard to identify pain in even the smallest infants and children.  A goal of palliative care is to alleviate pain and other distressing symptoms.

Are doctors and medical staff receiving adequate training in palliative care?

Healthcare facilities in New Jersey and around the United States have made great strides in educating health care professionals on palliative care which has led to improvements in the care of adults with serious, advanced illness.  Unfortunately, evidence supports the fact that the health care system has failed to meet the specialized needs of children with life threatening conditions through use of palliative care interventions and services.  Though pediatric palliative care programs and organizations exist, they are not readily accessible to all children and families in need.  Training in pediatric palliative care has not been widely available to doctors, nurses, and other health care team members.  Things are changing, slowly but surely.  According to the Center to Advance Palliative Care, there are eight Palliative Care Leadership Centers, two of which are children's hospitals.  Palliative Care Leadership Centers (PCLC) provide intensive, operational training and yearlong mentoring for palliative care programs at every stage of development and growth. Circle of Life Children's Center staff have learned tremendously from the resources available from the Center to Advance Palliative Care and a host of other palliative care organizations.