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DIFFERENCES BETWEEN HOSPICE CARE FOR CHILDREN AND ADULTS
WHY THE ADULT HOSPICE MODEL FAILS CHILDREN:
- Parents are not prepared to make an either/or choice between treatments aimed at achieving comfort and treatments aimed at disease management/elimination
- Pediatricians are strongly involved with and committed to their children and resist "turning over" control of the care plan to others at the end of life.
- Childhood diseases are treated as aggressively as possible, with the overall goal of extending the life of the child as much as possible at any cost.
- Parents identify the point of diagnosis as the most devastating time of emotional/spiritual adjustment.
- The expertise and skills involved with children (development issues/needs) are not inherent in the skills base of hospice workers who care for a predominantly elderly population.
- Entrance into hospice (requiring a six-month prognosis) assumes a cancer trajectory, not other diseases with different trajectories, although there is no scientific basis for the "six-month rule."
- Scope of services of the typical adult hospice does not include pediatric/adolescent specific services.
- Small number of pediatric cases affects "economies of scale" within hospice resources.
- Entrance into hospice care is based on a patient "informed consent" model, and children are dependent on the "informed consent" of their legal guardians.
- Reimbursement, not best clinical practice nor what is often in the best interest of the child, drives choices made available to parents/guardians.
PATIENT ISSUES
- Patient is not legally competent
- Patient is in a developmental process which affects understanding of life and death, sickness and health, God, etc.
- Patient has not achieved a "full and complete life"
- Patient lacks verbal skills to describe needs, feelings, etc.
- Patient will protect parents and significant others at own expense
- Patient is often in a highly technical medical environment
FAMILY ISSUES
- Family needs to protect the child from information about his/her health
- Family needs to do everything possible to save the child
- Family may have difficulty dealing with siblings
- Family stress on finances
- Family fears that care at home is not as good as at the hospital
- Grandparents feel helpless in dealing with their children and grandchildren
- Family needs relief from burden of care
CAREGIVER ISSUES
- Caregivers need to protect children, parents, siblings
- Caregivers feel a sense of failure in not saving the child
- Caregivers lack understanding children's cognitive level
- Caregivers feel a sense of "ownership" of children, even at expense of parents
- Caregivers have out-of-date ideas about pain in children, especially infants
- Caregivers lack knowledge about children's disease processes
- Influence of "unfinished business" on style of care
INSTITUTIONAL/AGENCY ISSUES
- Less reimbursement or none for children's hospice/home care
- High staff intensity caring for children at home
- Ongoing staff support necessary
- Children's services have immediate appeal to public
- Special competencies are needed in pediatric care
- Assess how admission criteria may screen out children
- Address unusual bereavement needs of family members
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