Pediatric Palliative Care - Pediatric Supportive Care Team
We expect children to live to adulthood; however, children do die. Some die from diseases they are born with, others from accidents or illnesses. The devastating effects associated with the death of a child can be lessened by providing palliative, hospice, and bereavement care. At St. John Hospital (SJH) in Detroit, MI, the services that provide care for children chartered the Pediatric Palliative Care Committee. The committee brought together staff from the inpatient pediatric unit, cancer center, home care, and hospice care services within the St. John Health System. Utilizing established staff and services, this group began to provide care for children with potentially life limiting illnesses in a coordinated, multidisciplinary team approach. The positive outcomes of this approach include an overall increase in patient and family satisfaction with care, a decrease in the number of emergency room visits and inpatient hospital stays, and an increase in patient and family informed decision making and goal setting. Positive outcomes for the staff include support in caring for children with life limiting illnesses and an increase in satisfaction with the care they provide.
There are approximately 400,000 children living in America with chronic, life-threatening conditions (Last Acts, 2002a). Every year approximately 53,000 children die. Half of these children die of chronic, sometimes life-long disorders. Many endure substantial suffering, and attempts to control their symptoms are often unsuccessful. Only about 5,000 of the 53,000 dying children receive hospice care, usually for a brief time (Levetown, 2001). There is a large gap in supportive care services from the time the child is diagnosed with a potentially life-limiting illness until the time the child has reached the end stages of that illness and is placed in hospice care. Palliative care services fill that gap.
The American Academy of Pediatrics (AAP) described the difference between hospice care and palliative care in the policy statement entitled Palliative Care for Children. "Palliative care seeks to enhance quality of life in the face of an ultimately terminal condition. Palliative treatments focus on the relief of symptoms (e.g., pain, dyspnea) and conditions (e.g., loneliness) that cause distress and detract from the child's enjoyment of life. It also seeks to ensure that bereaved families are able to remain functional and intact. Hospice care refers to a package of palliative care services (including, for example, durable medical equipment, and both diagnostic and therapeutic interventions), generally provided at a limited per diem rate by a multidisciplinary group of physicians, nurses, and other personnel, such as chaplains, health aides, and bereavement counselors" (AAP, 2000). In addition to the differences in hospice and palliative care, pediatric end-of-life care is very different from adult end-of-life care. The current model of end-of- life care was designed for adults and does not translate well in caring for children (Schmidt, 2003). Providing pediatric end-of-life care and palliative care requires specialized knowledge and training to address the unique needs of children (Sumner, 2003).
Pediatric palliative care is a philosophy of patient care as well as an organized program for delivering care to children with potentially life-limiting illnesses. This care focuses on enhancing quality of life for the child and family, minimizing suffering, optimizing functions, and providing opportunities for personal growth (Solomon et al., 2002). Pediatric palliative care is achieved by effectively managing pain and other distressing symptoms (such as fatigue, dyspnea, nausea and vomiting, anxiety, constipation, anorexia, depression, confusion), as well as providing psychological and spiritual care from the beginning (at diagnosis) that continues throughout the entire course of a child's life and beyond. Pediatric palliative care neither hastens nor postpones death; it strives to guide and assist the child and family in making decisions that maximize their quality of life (Children's International Project on Palliative/Hospice Services [ChiPPS], 2001).
There is a scarcity of hospice and palliative care services for children nationwide. The Institute of Medicine (IOM) report, "When Children Die: Improving Palliative and End-of-Life Care for Children and Families," states that "We can and must reduce the number of those who fail to receive consistent, competent care that meets not only their physical needs but their emotional, spiritual, and cultural ones as well" (IOM, 2003). This can be accomplished by linking existing medical care with supportive home care, hospice, and community services (Sumner, 2003) (see Table 1 for resources).
We expect children to live to adulthood; however, children do die. Some die from diseases they are born with, others from accidents or illnesses. The devastating effects associated with the death of a child can be lessened by providing palliative, hospice, and bereavement care. At St. John Hospital (SJH) in Detroit, MI, the services that provide care for children chartered the Pediatric Palliative Care Committee. The committee brought together staff from the inpatient pediatric unit, cancer center, home care, and hospice care services within the St. John Health System. Utilizing established staff and services, this group began to provide care for children with potentially life limiting illnesses in a coordinated, multidisciplinary team approach. The positive outcomes of this approach include an overall increase in patient and family satisfaction with care, a decrease in the number of emergency room visits and inpatient hospital stays, and an increase in patient and family informed decision making and goal setting. Positive outcomes for the staff include support in caring for children with life limiting illnesses and an increase in satisfaction with the care they provide.
There are approximately 400,000 children living in America with chronic, life-threatening conditions (Last Acts, 2002a). Every year approximately 53,000 children die. Half of these children die of chronic, sometimes life-long disorders. Many endure substantial suffering, and attempts to control their symptoms are often unsuccessful. Only about 5,000 of the 53,000 dying children receive hospice care, usually for a brief time (Levetown, 2001). There is a large gap in supportive care services from the time the child is diagnosed with a potentially life-limiting illness until the time the child has reached the end stages of that illness and is placed in hospice care. Palliative care services fill that gap.
The American Academy of Pediatrics (AAP) described the difference between hospice care and palliative care in the policy statement entitled Palliative Care for Children. "Palliative care seeks to enhance quality of life in the face of an ultimately terminal condition. Palliative treatments focus on the relief of symptoms (e.g., pain, dyspnea) and conditions (e.g., loneliness) that cause distress and detract from the child's enjoyment of life. It also seeks to ensure that bereaved families are able to remain functional and intact. Hospice care refers to a package of palliative care services (including, for example, durable medical equipment, and both diagnostic and therapeutic interventions), generally provided at a limited per diem rate by a multidisciplinary group of physicians, nurses, and other personnel, such as chaplains, health aides, and bereavement counselors" (AAP, 2000). In addition to the differences in hospice and palliative care, pediatric end-of-life care is very different from adult end-of-life care. The current model of end-of- life care was designed for adults and does not translate well in caring for children (Schmidt, 2003). Providing pediatric end-of-life care and palliative care requires specialized knowledge and training to address the unique needs of children (Sumner, 2003).
Pediatric palliative care is a philosophy of patient care as well as an organized program for delivering care to children with potentially life-limiting illnesses. This care focuses on enhancing quality of life for the child and family, minimizing suffering, optimizing functions, and providing opportunities for personal growth (Solomon et al., 2002). Pediatric palliative care is achieved by effectively managing pain and other distressing symptoms (such as fatigue, dyspnea, nausea and vomiting, anxiety, constipation, anorexia, depression, confusion), as well as providing psychological and spiritual care from the beginning (at diagnosis) that continues throughout the entire course of a child's life and beyond. Pediatric palliative care neither hastens nor postpones death; it strives to guide and assist the child and family in making decisions that maximize their quality of life (Children's International Project on Palliative/Hospice Services [ChiPPS], 2001).
There is a scarcity of hospice and palliative care services for children nationwide. The Institute of Medicine (IOM) report, "When Children Die: Improving Palliative and End-of-Life Care for Children and Families," states that "We can and must reduce the number of those who fail to receive consistent, competent care that meets not only their physical needs but their emotional, spiritual, and cultural ones as well" (IOM, 2003). This can be accomplished by linking existing medical care with supportive home care, hospice, and community services (Sumner, 2003) (see Table 1 for resources).