Non-Escalation of Life Prolonging Therapies

• Mode of Death:
  • Progression of Underlying Disease
• Comments:
  • Difficult to control or predict exactly when and how death will occur
  • Allow family to recognize dying as a consequence of disease progression and beyond their control
  • Blood transfusions and antibiotics may provide comfort and should be judged on the basis of their actual effects on comfort (e.g. fluid overload versus improved energy level)

Compassionate Extubation

• Mode of Death:
  • Hypoxia, hypercarbia, acidosis, hemodynamic collapse
• Comments
  • Allows for a rapid death if lung disease is severe or if patient has no respiratory drive
  • Prepare for possible secretions, anxiety, dyspnea
  • Stop neuromuscular blockade prior to extubation
  • Consider pre-medication to help alleviate symptoms

Cessation of Hemodynamic Support (Inotropes, Vasopressors, ECMO)

• Mode of Death:
  • Hypotension progressing to acidosis, shock, coma
• Comments:
  • Hypotension can result in significant sedation
  • Death may be rapid if patient is on significant hemodynamic support or may be hours to days if on lesser degrees of hemodynamic support
  • Can precipitate symptoms of heart failure or ischemia

Discontinuation of Dialysis

• Mode of Death:
  • Acidosis, Electrolyte Disturbances, Uremia, Fluid Overload,
• Comments
  • Uremia can cause sedation
  • Symptoms of fluid overload be distressing-prepare family and treat symptoms appropriately
  • Typically a prolonged course (days to weeks)
  • However, death can ultimately be rapid (hyperkalemia with cardiac arrest)

Withholding of Artificial Nutrition or Fluid

• Mode of Death:
  • Dehydration and Underlying Condition (NOT Starvation)
• Comments:
  • Aids with comfort related to fluid status and digestive system shutting down
  • Hunger and thirst lessen after 1-2 days with an increase in ketones and release of endogenous endorphins which can have an analgesic effect
  • Death tends to occur within days to weeks (reported range 2-37 days) and often during sleep
  • Requires good mouth care

• Dramatic physical changes can occur: significant weight loss, skin changes, sunken eyes, concave abdomen, abnormal respiration (including prolonged apnea)
• Emotionally charged topic: important to have a consensus among team to provide a united front
• Provide emotional support to family around concern for “starving” or “killing” their child, legal ramifications of decisions, judgment of extended family and friends
• Avoid use of terms “withdrawal of care” and “reduction of care”; instead use terms such as “focus on comfort and quality of life” or “preventing suffering”
• Care itself is never withdrawn, goals for care have changed while care often intensifies in other ways
• Difficult care choices are ideally made when there is consensus among patients, parents, providers
• However, in some cases it can be important to emphasize that decisions are provider-directed to minimize parental feelings of burden and guilt
• Limit invasive tests or monitoring that do not promote comfort
• Some parents want to know how long their child will live
  • Guide parents by speaking in terms of minutes/hours, hours/days, days/weeks, weeks/months
  • Acknowledge that it is difficult to predict length of survival-
  • Examples:
    • “It is hard for us to know and we find that when we make predictions we are frequently Wrong. Based on _____’s medical situation, my best estimate would be ______. It is important to know, however that children often surprise us and may live longer or shorter than we anticipate, so it is important that we are prepared for both situations”
    • “Based on how much support ______is currently receiving, we expect he/she will die within _________ Some kids do surprise us, though, and it is possible that he/she could live for a longer time. Regardless of what happens, we are ready to keep ________ comfortable.”