Ishibashi: Pediatric End of Life Flashcards
Approx 50,000 children die in the US every year. What are some common reasons?
trauma congenital and perinatal conditions extreme prematurity heritable disorders aquired illness, neoplasms
Seeks to enhance quality of life of a child and their family in the face of an ultimately terminal condition
palliative care
What are the components of palliative care?
control the pain and other symptoms
addresses the developmental, psychological, social, or spiritual problems of the child
What does “hastening death” refer to? Does it mean intentionally hastening the death of a child?
no; it refers to forgoing life-sustaining treatment
*important to keep the goal in mind: optimize the child’s experience rather than hastening death
Studies show that many clinicians give inadequate (blank) out of fear of hastening death.
pain medication
Distinguishes between effects that are intended from those that are foreseen but unintended
doctrine of double effect
*It is important to remember that the child’s progressive deterioration and death may be attributed to the disease process and not the medication
Dying with (blank) and without (blank) is the primary goal
dignity; pain/distress
How can you provide competent compassionate palliative care?
provide access to therapies that are likely to improve the child's QOL educate grief and family counseling peer support music therapy child-life intervention spiritual support appropriate respite care
Who is involved in the palliative care team?
child family parents' employers teachers school staff health care professionals nurses
Children should be encouraged to (blank) about feelings, or express themselves through art or music therapy
talk
Pediatrician needs to acknowledge the child’s own recognition of the likelihood of (blank), to help the child communicate his or her (blank), and to plan for the child’s death
premature death; wishes
When discussing death with a child, what are some things that should be considered?
disease experience and developmental level of the child
child’s understanding and prior experience with death
family’s religious and cultural beliefs about death
child’s usual patterns of coping with pain and sadness
expected circumstances of death
When discussing death, how should communication be?
open and honest
*avoiding the conversation ignores that fact that most ill children are aware of their condition
2 ways to best deal with parents of dying children
Provide realistic prognosis and the range of time in which the death is likely to occur
Support parental expression of disappointment, anger, grief, suffering
Provision of care to an ill child by qualified caregivers other than family members
respite care
Does palliative care end when a death occurs?
no; an important role of the palliative care team is to support the family after the death of the child
What’s this?
The family must have the opportunity to carry out important family, religious, and/or cultural rituals and to hold the child before and after death.
closure
What are some ways in which caregivers of dying children receive institutional support?
paid funeral leave
routine counseling
remembrance ceremonies
Physicians and nurses experience grief differently.
Most deaths evoked strong emotional responses from (blank)
medical students
(blank) is part of the grief process for both parents and caretakers.
Staying connected to bereaved parents, sending cards, meeting with family, attending funeral, or written thoughts of reflections of condolence.
closure
T/F: A pediatric palliative care interdisciplinary team is more than end-of-life symptom management.
“The goal is to add life to the child’s years, not simply years to the child’s life.”
True
