Pediatric Palliative Care: Starting a Hospital-Based Program
Pediatric Palliative Care: Starting a Hospital-Based Program
The value of palliative care in pediatrics has received significant attention over the past 10 years. The American Academy of Pediatrics and the Institute of Medicine published recommendations involving children who have a life-limiting diagnosis in a palliative care program early in their disease process. Palliative care is intended to assure an emphasis on quality of life in addition to the current medical treatment, which may be focused on cure, symptom management, and/or end-of-life care. This article describes one hospital's experience in planning, implementing, and managing a pediatric palliative care program. Implementing a hospital-based palliative care program in a children's hospital can be accomplished through careful planning and analysis of need. Writing an official business plan formalized the request for organizational support for this program, including the mission and vision, plans for how services would be provided, expected financial implications, and initial plans for evaluation of success.
The need for pediatric palliative care programs has been addressed in multiple forums over the past 10 years. The American Academy of Pediatrics (AAP) Committee on Bioethics and Committee on Hospital Care (2000) published recommendations for palliative care stressing the need for the development of palliative care programs for children with life-threatening or terminal conditions. The Institute of Medicine (IOM) published a landmark report entitled When Children Die in 2003 (Field & Behrman, 2003) Both reports highlighted the need for integration of palliative care into the care of these children early after diagnosis to assure an ongoing focus on quality of life, shared decision-making and collaboration with the child and family, and as mutual goal-setting along the way. The AAP suggested that palliative care should be offered at diagnosis and continued throughout the course of illness, whether the outcome is cure or death. A famous quote from the AAP suggested that the goal of pediatric palliative care should be "to add life to the child's years, not simply years to the child's life" (AAP, 2000, p. 353).
It is estimated that 54,000 children die in the U.S. each year. These children include three distinct populations: 1) children who are born without the expectation of survival to adulthood, but who may live for an extended period of time with substantial suffering; 2) children who develop life-threatening diseases, such as cancer; and 3) children who experience sudden, unexpected death caused by trauma (Browning & Solomon, 2005). Each of these scenarios presents unique needs from a palliative care perspective, yet all of these patients and families could benefit from various services offered by palliative care teams.
Abstract and Introduction
Abstract
The value of palliative care in pediatrics has received significant attention over the past 10 years. The American Academy of Pediatrics and the Institute of Medicine published recommendations involving children who have a life-limiting diagnosis in a palliative care program early in their disease process. Palliative care is intended to assure an emphasis on quality of life in addition to the current medical treatment, which may be focused on cure, symptom management, and/or end-of-life care. This article describes one hospital's experience in planning, implementing, and managing a pediatric palliative care program. Implementing a hospital-based palliative care program in a children's hospital can be accomplished through careful planning and analysis of need. Writing an official business plan formalized the request for organizational support for this program, including the mission and vision, plans for how services would be provided, expected financial implications, and initial plans for evaluation of success.
Introduction
The need for pediatric palliative care programs has been addressed in multiple forums over the past 10 years. The American Academy of Pediatrics (AAP) Committee on Bioethics and Committee on Hospital Care (2000) published recommendations for palliative care stressing the need for the development of palliative care programs for children with life-threatening or terminal conditions. The Institute of Medicine (IOM) published a landmark report entitled When Children Die in 2003 (Field & Behrman, 2003) Both reports highlighted the need for integration of palliative care into the care of these children early after diagnosis to assure an ongoing focus on quality of life, shared decision-making and collaboration with the child and family, and as mutual goal-setting along the way. The AAP suggested that palliative care should be offered at diagnosis and continued throughout the course of illness, whether the outcome is cure or death. A famous quote from the AAP suggested that the goal of pediatric palliative care should be "to add life to the child's years, not simply years to the child's life" (AAP, 2000, p. 353).
It is estimated that 54,000 children die in the U.S. each year. These children include three distinct populations: 1) children who are born without the expectation of survival to adulthood, but who may live for an extended period of time with substantial suffering; 2) children who develop life-threatening diseases, such as cancer; and 3) children who experience sudden, unexpected death caused by trauma (Browning & Solomon, 2005). Each of these scenarios presents unique needs from a palliative care perspective, yet all of these patients and families could benefit from various services offered by palliative care teams.
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