End-of-life care for the elderly requires an understanding of not only the inherent physical changes that occur with aging but also the influence of social conditions, culture, and individual life experiences and personality. Attempting to understand the experience of dying outside the context of the wholeness of life is equivalent to trying to comprehend the essence of life while excluding notions of vulnerability and mortality.
To understand the impact of dying on the elderly, one must consider their history and the emotional, social, and spiritual context in which they live. Age provides experience, which is perhaps why some studies have reported that older adults have a different outlook on life and death, display better mental well-being, and have adaptive strengths developed over a long life.9,10 Furthermore, multiple losses may have profound impact on a person’s identity, sense of self, and quality of life.11 These losses may touch all aspects of an individual’s end-of-life experience.
Professor M’s cancer was predated by several years of functional deterioration and debility, secondary to COPD. The cancer diagnosis, along with the recent death of a good friend and colleague, resulted in feelings of grief, periods of despondency, and mounting frustration with his perceived lack of productive living. On examination, which took place a few weeks before his death, he was bedridden and expressed feelings of helplessness and hopelessness and a wish for death to come quickly. He denied any intent to take his own life, and while his physical comfort was relatively good, his emotional and existential suffering were considerable. Although he still appreciated his wife’s company, he was worried that he would become a burden to her and his other health care providers.
The physical consequences of aging provide a necessary backdrop to understanding the psychosocial dimensions of end-of-life care. The elderly often experience a variety of physical conditions of varying severity. In one study, elderly patients with advanced cancer reported a median of 11 distressing symptoms.12 In another study, older adults (65 or older) with cancer reported 3 or more comorbid conditions.13 Thus, while different illnesses are associated with their unique disease trajectories, the elderly may be plagued by long-term frailty, either predating or accompanying a life-threatening condition. Long-term disability and dependency can diminish functional capacity and set the stage for emotional, spiritual, and existential distress.14-16
There is a great deal of evidence that shows the consequences of unrelieved symptoms and loss of dignity, poor quality of life, and suffering.14-16 Similarly, the association between unmet physical, spiritual, and existential needs and psychological distress has been well articulated.17,18 Distress can become so overwhelming as to engender a genuine desire for early death. People who covet death, even toward the end of life, often report significant pain, lack of social support and, most significantly, major depression.14,19 Nearly 60% of patients who express an ardent wish to die meet diagnostic criteria for major depression.14 Approximately 10% to 25% of adults experience depression within the context of palliative care.19,20
Diagnosing depression in the elderly is fraught with additional challenges, including the lack of somatic symptom specificity, along with a frequent reticence to volunteer their feelings of depression as readily as younger patients.21,22 It is little wonder that depression in older patients, particularly patients near the end of life, often goes unrecognized and undertreated.
Anxiety among the elderly may derive from a variety of sources. On the one hand, it may be a manifestation of other conditions such as depression, delirium, dementia, or underlying medical complications.23 With regard to the latter, in the palliative care setting, anxiety can signal impending cardiac or respiratory decompensation, pulmonary embolism, an electrolyte imbalance, or dehydration. On the other hand, anxiety may result from psychological or existential challenges, such as fear of isolation or abandonment, dependency, disability, and death itself.24
Some studies suggest that death anxiety may decrease with age. Others report that although the elderly are more accepting of the finiteness of life and are able to put it into the context of the wholeness of life, fear of dying may actually increase with age.25-27 Information that demystifies the experience of dying and addresses anticipated concerns that may arise during a terminal course of illness has been found to alleviate distress toward the end of life.
Existential and spiritual issues
Gerontological theorists have identified finding purpose and meaning in life as key developmental tasks facing the elderly.28 Both of these are facets of spirituality and are important issues for the elderly facing death. In fact, the ability to find or sustain a meaningful life is considered to be a strong buffer against despair at the end of life.29 The results from a study by Moadel and colleagues30 show that patients with cancer expressed a need for help in overcoming fear, finding hope and meaning in life, finding spiritual resources, and having someone to talk with about the meaning of life and death. However, 25% to 51% of the participants indicated that their spiritual needs were not being met.