1. Focus.End-of-life care should focus on the patient’s life and current experience.
Too often death is seen as a failure of treatment, not a natural event. This deprives patients of the opportunity to enter what Kubler-Ross calls “the final stage of growth.” Too often physicians either withdraw from patients in the terminal stage of illness, or encourage them to continue intensive therapies and not “give up.”
2. Self-determination. Individuals vary in their tolerance for pain and suffering.
Only patients can determine whether they are suffering, or are suffering too much. They should receive state-of-the-art comfort care accordingly. Providers should prescribe opioid analgesics generously for pain and breathlessness. Patients should control the dose and frequency of administration.
Symptoms such as hiccoughs, nausea, diarrhea, itching and fatigue can be oppressive and should not be disregarded.
3. Autonomy. Decisions about end-of-life care begin and end with the autonomous patient.
The answer to the question “who should decide?” is “the patient decides.”
Even very ill patients usually retain decisional capacity. Loved ones and providers should avoid inadvertently usurping decisions when communication becomes difficult. If patients are no longer capable of decision making, their known wishes still dictate decisions.
4. Personal Beliefs. Patients should feel empowered to make decisions based on their own deeply held values and beliefs, without fear of moral condemnation or political interference.