Pediatric Hospice and Palliative Care
HOSPICE AND PALLIATIVE CARE
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02:08 PM -- Pediatric Hospice and Palliative Care
Dr. Brian Greffe, The Children's Hospital, introduced himself and provided a handout to the committee (Attachment F). Dr. Greffe provided an overview of pediatric hospice and palliative care. He provided data regarding the death of children in the United States. He described pediatric palliative care which is a comprehensive approach to the needs of children with life-threatening illness. He spoke to the four types of diseases in children that require palliative care, these categories include diseases which are curative but the cure may fail, diseases in which premature death is anticipated but with intense treatment may prolong good quality of life, progressive diseases, and conditions with severe neurological disabilities. He stated that his presentation will include an overview of the Butterfly Program, models of pediatric palliative and hospice care, and the Colorado Medicaid Waiver for Pediatric Palliative and Hospice Care.
Dr. Greffe described the Butterfly Program which provides medical and home care, as well as emotional support, for families and children with life-threatening illness. He stated that the model for pediatric palliative care is quite different from the adult model for palliative care. One example of the differences in the pediatric model is that children are eligible who have a 12-month expectancy, versus in the adult model, a physician must certify that an adult has a 6-month expectancy. He stated that children do not need to have a DNR form in place as adults are required and that children are not disenrolled from the program if they surpass the 12-month expectancy.
Dr. Greffe spoke to the educational outreach efforts of the Children's Hospital. Committee members asked questions of Dr. Greffe regarding the specifics of the program.
Dr. Greffe described the Cocoon program. He stated that the program helps families and children make their hospital room look like a home. He showed a picture of a typical room with a 'cocoon' or a large cabinet that had a tv, games, and other objects in it to create a more friendly environment. He spoke to some of the challenges and successes regarding pediatric hospice and palliative care. He briefly reviewed other models of pediatric palliative and hospice care, including programs at Children's Mercy Hospital, Harriett Lane Compassionate Care - John Hopkins University, St. Mary's Health Care System for Children, and Seattle Children's Hospital Palliative Care Consulting Service.
Dr. Greffe provided an overview of the state's Children's Medicaid Waiver for Pediatric Palliative and Hospice Care. He stated that the waiver provides pediatric palliative care services to Medicaid eligible participants from the time of diagnosis. He stated that the program was implemented in April 2008. He stated that it took over 7 years to obtain approved for the waiver from the Centers of Medicare and Medicaid. He stated that services include nursing, counseling, spiritual support, respite, complementary therapies such as art and music therapy, and anticipatory grief therapy.
The committee took a brief recess.