As an individual nears the end of his or her life, decisions about health care become more complex. Not only does physical care become important, but the patient’s emotional, social, spiritual, and psychological needs must also be addressed. Family and caregivers must be included in the overall management of the disease (Comfort, 2001). Communication is extremely important. For example, the intent of decisions made by the individual, family, and health care providers may be misunderstood and the consequences less certain (Kuebler, Berry, & Heidrich, 2002; National Institutes of Health [NIH], 2013a; Strada, 2013).
The physical changes experienced at the end of life become more challenging and the results of their assessment and treatment can “ripple” through the patient, family, and friends.
Most life-threatening illnesses have a familiar and documented natural clinical course, which provides patients and their families with a framework in which to make important quality-of-life decisions about care at the end of life. The trajectory of the disease provides the health care professional with valuable information about what patients have undergone, their emotional states (as well as the emotional state of the family), and their goals for care (Kuebler et al., 2002; McCarthy, Phillips, Zhong, Drews, & Lynn, 2000; NIH, 2013a).
However, preferences of the caregivers may not be the same as the patient’s preferences at the end of life. Some disagreed about controlling the time and place of death but patients and caregivers usually agreed about symptom and pain management (Comfort, 2001; NIH, 2013a).
Physiological changes at the end of life can vary widely, since individuals may be of any age, or they may be individuals who are dying from “natural causes” related to the normal process of aging.