According to the Institute of Medicine report When Children
Die: Improving Palliative and End of Life Care for Children and
their Families,1in 1999 approximately
55,000 children from birth through age 19 died in the United States.
Some of these children and adolescents died as the result of an
accident and had been completely healthy until death. Some infants
and children died of diseases, but their deaths were unexpected
because recovery had been considered a probability. Others died as
the inevitable conclusion of their illness; recovery was considered
at least unlikely and, in many cases, impossible. In all these situations, however,
the death (or near-death, when the child eventually recovers) of
a child is a horrendous event for the family members left behind.
It is a life-altering tragedy, one whose stages family members will
never forget, nor will they forget who said what to them before,
during, and after the death. A careless remark by a health professional
may be taken as dismissive of parental anguish and thus remembered
in anger for a lifetime.
Although there seems to be agreement that students and residents
are taught the medical techniques and procedures to care for dying children,
there is far less agreement that they are equipped to talk to parents
and patients about bad news, or to understand the psychosocial ramifications
of a child’s critical illness or death for the family when
they enter practice. Residents are also thought in many cases to
be inadequately trained to to talk to and help the patient understand
what is happening.2,3 This chapter will, it is
hoped, add to such understanding.
End-of-life care focuses on preparing for an anticipated
death, such as discussing “Do Not Resuscitate” orders
and writing them, managing the medical aspects of the death, and
relieving immediate symptoms. Palliative care seeks
to prevent or relieve distress, both physical and psychic, for patients
and families, and to enhance the quality of life in the face of
an ultimately terminal condition. According to the American Academy
of Pediatrics’ Committee on Bioethics, palliative
treatments “focus on the relief of symptoms (eg,
pain) and conditions (eg, 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.”4
According to Friedman et al:
The American Academy of Pediatrics has also established
a definition of palliative care, with special attention paid to
pediatric patients. Pediatric palliative care seeks to enhance the
quality of life in the face of an ultimately terminal condition.
The treatments focus on the relief of symptoms and conditions that
cause distress and distract from the child’s enjoyment
of life. Such care includes the control of pain and other symptoms
and addresses the psychological, social, or spiritual needs of children
living with life-threatening or terminal conditions. The goal of palliative
care is achievement of the ...