End-of-Life Care
Goals and symptom management
End-of-life care is goal-concordant care. Anticipate and prescribe for pain, dyspnea, secretions, agitation, seizures, nausea, and fever. Anticipatory prescribing prevents crises. Continue analgesics and anxiolytics; stopping opioids at the end of life because of fear of hastening death causes avoidable suffering.
Withdrawal of life-sustaining therapy
Withdrawal may involve a ventilator, vasopressors, dialysis, or artificial nutrition. Prepare the family, choose the setting, and plan the process. For terminal extubation, premedicate with an opioid and benzodiazepine for dyspnea and distress, have suction available but avoid deep suctioning, and anticipate tachypnea, secretions, and mottling. Explain what the family will see. Proportionate palliative sedation is acceptable for refractory suffering; it is not intended to hasten death.
Nutrition and hydration
At the end of life, anorexia and decreased fluids are expected. Forced feeding or hydration can worsen edema, secretions, and breathing. Provide mouth care and ice chips; discuss the meaning of feeding with the family.
After death
Know pronouncement, organ donation, autopsy, and cultural or religious rituals. Allow family presence, memory-making, and privacy. Document the plan and support bereavement follow-up.
Traps
Stopping analgesia at the end of life; describing sedation as “terminal sedation” to hasten death; routine deep suctioning of secretions; forced hydration; equating DNR with no comfort care; failing to prepare the family for terminal changes; not documenting the withdrawal plan.
Worked example
A child with spinal muscular atrophy undergoes terminal extubation. Give morphine and midazolam first, place the child with the family, explain that breathing may become irregular and secretions may appear, continue comfort medications, and stay present. Pronounce death and support the family.
Rule of thumb
Anticipate, prescribe, and explain. Families tolerate what they expect.
Grief, Bereavement, and Care of the Imminently Dying Patient
Developmental understanding of death
Infants have no concept of death but react to separation. Preschoolers may see death as temporary and magical. School-age children understand finality and may fear abandonment or blame themselves. Adolescents understand abstractly and may struggle with identity and peer separation. Match explanations to development.
Grief and bereavement
Anticipatory grief begins before death. Worden’s tasks include accepting reality, processing pain, adjusting to a world without the person, and finding connection while moving forward. The Dual Process Model describes oscillation between loss-oriented and restoration-oriented coping. Prolonged grief disorder involves persistent yearning and impairment beyond expected time frames. Disenfranchised grief-such as that of siblings, grandparents, or staff-is often unrecognized. Offer family follow-up, sibling support, and memorials.
The imminently dying child
Recognize decreased intake, increased sleep, cool or mottled extremities, oliguria, Cheyne-Stokes breathing, and terminal secretions. Provide mouth care, repositioning, gentle hygiene, family presence, and comfort medications. Stop nonessential monitoring and labs. Explain each change to the family.
Traps
Suctioning terminal secretions deeply, which causes distress; forcing food or fluids; interpreting all agitation as pain when delirium or anxiety is possible; assuming all grief needs referral; applying adult grief stages rigidly to children; overlooking sibling grief; pathologizing normal cultural expressions.
Worked example
A family is alarmed by “the death rattle.” Explain that secretions pool because the child cannot clear them, and that it usually does not distress the child. Reposition, give glycopyrrolate if secretions are troubling, avoid deep suction, and reassure the family that hearing is often preserved.
Rule of thumb
Grief is not a linear sequence. Ask, “What does this loss mean to you?” and follow the family’s lead.