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End-of-life care has received increasing attention in the last decade; however, the focus continues to be on the physical aspects of suffering and care to the virtual exclusion of psychosocial areas. This paper provides an overview of the literature on the intra- and interpersonal aspects of dying, including the effects that psychosocial variables have on end-of-life decision- making; common diagnosable mental disorders (e.g., clinical depression, delirium); other types of personal considerations (e.g., autonomy/control, grief); and interpersonal/environmental issues (e.g., cultural factors, financial variables). Six roles that qualified mental health professionals can play (i.e., advocate, counselor, educator, evaluator, multidisciplinary team member, and researcher) are also outlined. Because psychosocial issues are ubiquitous and can have enormous impact near the end of life, properly trained mental health professionals can play vital roles in alleviating suffering and improving the quality of life of people who are dying.
Diagnosable mental disorders
Anxiety disorders. Anxiety disorders commonly accompany terminal illness due to apprehension about symptoms, including pain, and about treatment, care-taking arrangements, and fears about the dying process (Barraclough, 1997; Block, 2001; Strang, 1997). Symptoms of unresolved past losses, acute stress, and even post-traumatic stress disorder may occur when a person is facing the end of life. Dying individuals and their loved ones may also experience death anxiety during the dying process (e.g., Neimeyer & Van Brunt, 1995). For some, information may alleviate anxiety, but others will need to discuss their concerns with a knowledgeable and sensitive mental health professional. In addition, medication may be necessary for some individuals.
Clinical depression and other mood disorders. The condition that is most commonly mentioned when discussing psychosocial issues near the end of life is depression (Baile et al., 1993). Clinical depression must be differentiated from the lay definition of depression and from grief and mourning (Block, 2000; 2001). Such subtle distinctions are difficult to make by non-mental health professionals or therapists who are inexperienced with people near the end of life and should be made by a trained clinician (Peruzzi et al., 1996; Sullivan & Youngner, 1994; Zaubler & Sullivan, 1996). Further, clinical depression is neither an inevitable nor a normal part of the dying process and, when it does occur, there are a variety of therapeutic interventions that can ameliorate it (Barraclough, 1997; Block 2000, 2001;Wilson et al., 2000).
Although relatively high levels of depression (and anxiety) have been associated with decreased complex problem-solving abilities, the presence of clinical depression does not necessarily make a person incapable of making health care decisions (Sullivan, 1998; Sullivan & Youngner, 1994; Werth et al., 2000; Zaubler & Sullivan, 1996). Further, some research has indicated that end-of-life decisions that are made while in the midst of mild to moderate clinical depression may not change after the depression has lifted (Ganzini et al., 1994b; Lee & Ganzini, 1992; 1994).
Bipolar disorder has not been reviewed in the context of end-of-life decisions. However it seems highly likely that the same incidence of bipolar disorder is found in dying individuals as in the general population. Thus, differential diagnosis is critical because some of the treatments for clinical depression may exacerbate the manic symptoms of bipolar disorder. Both the depression and the mania associated with these conditions can compromise decision-making.
Delirium. A common and often misdiagnosed condition in people with terminal illnesses is delirium (Barraclough, 1997; Lawlor et al., 2000; NIH, 1997). Delirium poses difficulties for the professional both in differential diagnosis with dementia and clinical depression (Farrell & Ganzini, 1995) as well as in how to ameliorate its effects. Because it is often iatrogenic (Inouye et al., 1999), treatable (Block, 2001; de Stoutz et al., 1995), and can compromise capacity to make health care decisions, it is essential that an experienced clinician evaluate the cause of compromised faculties.
Dementia. Various forms of dementia are becoming increasingly common as people continue to live longer, especially within the context of chronic and debilitating conditions (Larson & Imai, 1996; Working Group on the Older Adult, 1998). Dementia creates significant problems for the end-of-life treatment team because it can wax and wane, leading to alternating states of capacity and incapacity (Teresi et al., 1994). As a result, a person with dementia periodically may be capable of making and changing health care decisions. Thus, health care team members may need to check with dying individuals when they are lucid, to determine if their desires have changed. A related problem in the elderly is ‘pseudodementia’, a syndrome of reversible objective or subjective cognitive problems caused by a non-organic disorder, such as clinical depression (Bulbena & Berrios, 1986; Farrell & Ganzini, 1995; Working Group on the Older Adult, 1998).
Personality disorders. Little theoretical or empirical work has examined the impact of personality disorders on end-of-life decisions (Baile et al., 1993; Farrenkopf & Bryan, 1999; Ganzini et al., 1994a), and no definitive work has linked the desire for death with one or more personality disorders. It is unlikely that these disorders would lead to incapacity to make health care decisions (Ganzini et al., 1994a). However difficult interpersonal styles or personalities can affect the responsiveness of caregivers or possibly bias professional judgment, assessment, or treatment planning (Block & Billings, 1998; Gutheil, 1985).
Substance abuse. The use of different substances can affect the ability to make decisions. Substance abuse is correlated with personality characteristics of impulsivity, inadequate coping skills, and an inability to tolerate intense affect (Block & Billings, 1998) and can lead to cognitive impairment. Therefore, the abuse or use of illegal, legal, and prescription medications may cause the person to be unable to fully consider his or her situation, options, and treatment implications. Fortunately, such effects are usually reversible. Because of the persistent misperception about this matter, it is important to emphasize that the use of high doses of morphine or other analgesics to control pain should not be equated with addiction or substance abuse (American Academy of Pain Medicine and American Pain Society, 1996).
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