PALLIATIVE CARE: WHAT IS IT? Any form of medical care or treatment that focuses on reducing the severity of a disease or illness. Goals prevent and relieve suffering improve quality of life for patients facing serious illness. Not dependent on prognosis Can be offered in conjunction with cure directed therapy
PEDIATRIC PALLIATIVE MEDICINE AAP recommends palliative medicine to be offered to all children with a “life-threatening condition”. AAP supports an “integrated model of palliative care” in which palliative care is offered to a patient and their family at the time of diagnosis and the care is carried out throughout the illness whether it ends in cure or death. Palliative medicine should not only be offered to those children who are imminently dying or have a terminal condition as many needy children may be missed.
AAP POLICY ON PEDIATRIC PALLIATIVECARE AAP in 2000 (with reaffirmation in 2007) called for the development of clinical policies and minimum standards that promote the welfare of infants and children living with life- threatening or terminal conditions. The goal is to provide patients and their families support with curative, life-prolonging, and palliative care.
AAP POLICY ON PEDIATRIC PALLIATIVECARE Principles for palliative care: 1. Respect for the dignity of patients and families 2. Access to competent and compassionate palliative care 3. Support of the caregivers 4. Improved professional and social support for pediatric palliative care 5. Continued improvement of pediatric palliative care through research and education
BARRIERS TO PALLIATIVE CARE: PERCEPTIONS OFPEDIATRIC HEALTH CARE PROVIDERS Study in 2008 explored barriers to palliative care as perceived by physicians and nurses. Uncertain prognosis was the barrier most commonly perceived followed by: family not ready to acknowledge incurable condition language barriers time constraints family preference for more life-sustaining treatment than staff staff shortage
TYPICAL PEDIATRIC PALLIATIVE CARE TEAM Physicians Nurses Advanced practice nurses Social workers Psychologists Pharmacists Child development specialists Case managers Chaplains Bereavement counselors Integrative care Music therapy
GOOD COMMUNICATION Imperative in pediatric palliative medicine. Communication gaps are common in children with complex disease. Palliative physicians can assist with coordination of care as well as effective communication between the family and care team.
WHAT PEDIATRIC PALLIATIVE CARE IS NOTJUST ABOUT Cancer Many other conditions can benefit from palliative care such as cystic fibrosis or genetic disease. Infants and young children Palliative care also available for adolescents, young adults as well as prenatally. End of life Palliative care should be introduced after diagnosis of a potentially life threatening disease and not just when cure is no longer possible.
WHAT PEDIATRIC PALLIATIVE CARE IS ABOUT Family Palliative care strives to support the patient’s family during a very stressful and difficult time. Living Allowing the patient to live the best life possible with their family and friends. Friends, Community Palliative care can also support caregivers, friends and those in the patient’s community when needed. Hope Hope is a central part of palliative care. Hope for a cure is always important to everyone involved with the patient. When cure is not possible hope may be transitioned to other forms such as hope for comfort and happiness for the patient and family.
REFERENCES AAP. (2000). Palliative care for children. Pediatrics, 106 (2), 351-357. Davies, B., Sehring, J. C., Cooper, B. A., Hughes, A., Philp, J. C., Amidi-Nouri, A., et al (2008). Barriers to palliative care for children: Perceptions of pediatric health care providers. Pediatrics, 121, 282-288. Feudtner, C. (2007), Collaborative communication in pediatric palliative care: A foundation for problem-solving and decision making. Pediatric clinics of North America. 54, 583-607.