Timing
Associating palliative care with death and dying creates barriers to meeting the needs of children living with brain tumors. Waldman and Wolfe emphasize that prognostic uncertainty and not the likelihood of survival should be the trigger to initiate palliative care. Still, the time to introduce palliative care for children with BT remains unclear, is controversial, and is with little evidence to guide practice. Timing is further complicated by the perceived sharp division between curative cancer therapy and palliative care among pediatric oncologists and parents who view palliative care as giving up hope and representing failure.
Pediatric oncologists often recognize that cure is no longer possible earlier than parents. This is a valuable and critical time to engage parents to focus on a supportive care plan aimed at optimizing comfort and maximizing quality of life. Still, patients are referred late in the child’s trajectory, usually after the first relapse or after relapse therapy fails.
Cultural beliefs are central to perceptions of illness, end-of-life care, and the dying process. Ethnicity, culture-based values, and language barriers are important patient/family considerations that impact communication about end-of life care. The location of settings has also been identified as a barrier to implementing palliative care. In an examination of hospice referral patterns among pediatric oncologists, Fowleretal. identified that barriers to referral include inability of hospice settings to administer palliative chemotherapy and blood transfusions.
Timing Associating palliative care with death and dying creates barriers to meeting the needs of children living with brain tumors. Waldman and Wolfe emphasize that prognostic uncertainty and not the likelihood of survival should be the trigger to initiate palliative care. Still, the time to introduce palliative care for children with BT remains unclear, is controversial, and is with little evidence to guide practice. Timing is further complicated by the perceived sharp division between curative cancer therapy and palliative care among pediatric oncologists and parents who view palliative care as giving up hope and representing failure. Pediatric oncologists often recognize that cure is no longer possible earlier than parents. This is a valuable and critical time to engage parents to focus on a supportive care plan aimed at optimizing comfort and maximizing quality of life. Still, patients are referred late in the child’s trajectory, usually after the first relapse or after relapse therapy fails. Cultural beliefs are central to perceptions of illness, end-of-life care, and the dying process. Ethnicity, culture-based values, and language barriers are important patient/family considerations that impact communication about end-of life care. The location of settings has also been identified as a barrier to implementing palliative care. In an examination of hospice referral patterns among pediatric oncologists, Fowleretal. identified that barriers to referral include inability of hospice settings to administer palliative chemotherapy and blood transfusions.
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