Chapter 2: Explaining common clinical issues
What -- and who -- is suffering?
Whenever possible, families should be given information ahead of time about possible signs of disease progression and dying.
Families may interpret common physical changes associated with the end of life, such as restlessness, grimaces or differences in breathing, as suffering. They may wonder if these symptoms are a signal that the patient is in pain or distress. While these signs should always be evaluated, they are not always signs of suffering. When the individual is unresponsive, they may be signs that life is coming to an end.
Restlessness may occur due to disease or medications, but it also may be a sign that the end of life is near. Grimacing may be involuntary; it may occur as part of dreams. Many changes in breathing patterns occur, including skipped breaths, rapid breathing, and long pauses, but these generally occur when dying individuals are no longer awake, and they are not known to be distressing or to cause suffering to the individual.
Those who spend time with the individual who is dying may also be suffering in their own, personal way. Sometimes that suffering is projected onto the dying individual. Upon entering a room, it may be difficult to tell who is suffering the most.
It is important to evaluate the entire picture. That includes acknowledging and evaluating the suffering of the one who is dying, as well as that of those who surround that individual.