The doctor, being himself a mortal man, should be diligent
and tender in relieving his suffering patients, inasmuch as he himself must
one day be like a sufferer.
—Thomas Sydenham 1624–1689
The treatment of a child with chronic illness from which he or
she is not expected to recover but instead to die sometime in childhood
is one of the most difficult challenges we face as physicians and
caregivers.1,2 Children who are dying certainly
deserve no less treatment than those who are ill but expected to
live. This chapter is about the special aspects of delivering that
treatment to children with chronic disease who do not have a reasonable
likelihood to be cured and will die sometime in their childhood.
It is also about the comfort treatment that requires the same, or
perhaps more, planning, preparation, and forethought than we routinely
give to children not expected to die. What we can offer to the dying is treatment
and should always be considered so. We should treat our patients
with the same care and compassion that we would wish ourselves and
our children. This chapter and following chapters provide guidance
regarding the compassionate care of the dying child, and their family.
The skills required to treat a child with newly diagnosed acute
lymphoblastic leukemia are vastly different than those required
to care for a child with an incurable disease who is expected to
die, and that child’s family. In the soon to die the physician’s
presence, willingness to give time, devote skills in prescribing symptom
relief, show compassion, and demonstrate excellent communication
skills, in large part replace the life-prolonging equipment, the
scalpel, and the x-ray beam. Palliative treatment with the intent
to prolong life and palliative treatment to provide comfort without
attempting to prolong life place enormous responsibilities on the
physician and his or her immediate helpers. However, rewards from
fulfilling those responsibilities can far outweigh any burdens.
No areas of medicine cause more sadness or emotional turmoil to
the professional caregiver than treating dying children, and likewise
none has the potential for bringing greater personal satisfaction.
It is hoped that this chapter will be of aid to physicians and other
caregivers to achieve those benefits.
The problems faced by children who will die in childhood from
chronic disease are in many ways different from those of infants
dying soon after birth in the neonatal nursery, or from accident
victims and those with rampant infectious disease dying suddenly
in the emergency room or intensive care unit. In those devastating
but sudden tragedies, the patient, family members, or caregivers
may not have had time to develop mutual bonds that allow trust and
exercise of decision making. There is less or even no opportunity
for the patient and family members to express their autonomy, and
anticipatory bereavement is not possible. This results in heightened
grief, anger, and distress ...