Need for Pediatric Palliative Care Framework

Dr. Susan Fowler-Kerry
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There is a pressing need to clarify the goals of social policy for improving the palliative care of children who live with life-limiting illnesses and their families. National, provincial and territorial governments as well as private individuals and groups have important and complementary roles to play in the development of social policy approaches directed at improving pediatric palliative care services. There remains one voice too often forgotten in the policy process, namely that of the family living with effects of social policy. Polices are simultaneously personal and political, understanding how policies impact the lives of citizens who experience them and for whom they are ostensibly designed is absolutely crucial and forms the research focus. Thus the purpose of this critical inquiry was to link the lived worlds of parents who have or have had a child diagnosed with a life-limiting illness to existing social policies.

Whenever a child is diagnosed with a life-limiting illness, their childhood and the lives of their families are forever changed. With every medical breakthrough, every child saved creates a burden of expectation that the next child can also be saved. As a result, parents are often faced with difficult decisions that could possibly subject their child to a battery of painful and invasive procedures that in the end may prove to be futile. Aggressive treatment in our society has become synonymous with buying time and holds out the possibility of a cure. Changing how these children are managed is a daunting challenge because the state, society and health care system value aggressive treatment. This presentation is targeted to health care professionals, policy makers and those with an interest in improving the quality of life of children with life-limiting illnesses and their families.

Keywords: Children, Palliative Care, Social Policy, Health
Stream: Politics, Public Policy and Law
Presentation Type: Paper Presentation in English
Paper: Need for Pediatric Palliative Care Framework

Dr. Susan Fowler-Kerry

Professor, College of Nursing, University of Saskatchewan
Saskatoon, Saskatchewan, Canada

Has has developed a successful research program in the area of pediatric pain management, and more recently pediatric palliative care.She has numerous referred publications and grants in the area. As a result of her involvement in palliative care she has been involved in several projects in Eastern Europe and the Middle East. In addition, she has served as vice-chair and co-editor of the WHO monograph, Cancer Pain Relief and Palliative Care in Children, and has recently co-edited a chapter in the new Oxford Textbook of Palliative Care for Children.

Ref: I06P0342