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There are a variety of psychosocial issues that are not mental disorders but are often prominent aspects of end-of-life situations.
Autonomy/control. Research has indicated that issues of independence, autonomy, and control (alternatively referred to as ‘self-determination’) are of primary importance when people are considering end-of-life options and when they actually decide that death is their best option (Back et al., 1996; Chin et al., 1999; Cohen et al., 2000; Coombs Lee & Werth, 2000; Ganzini et al., 2000; Hedberg et al., 2002; Rosenblatt & Block, 2001; Singer et al., 1999; Sullivan et al., 2000; 2001). As a result, exploration of such matters and the range of actions that allow for the maximization of personal control are often an important part of the decision-making process.
Decision-making capacity. Already mentioned several times, capacity to make health care decisions is vitally important in end-of-life situations (Peruzzi et al., 1996; Sullivan & Youngner, 1994;Werth et al., 2000; Youngner, 1998; Zaubler & Sullivan, 1996). The literature associated with defining and assessing capacity is extensive and doing these evaluations can be difficult (Baker et al., 1998); however, a recent publication provides a set of guidelines for assessing capacity (Veterans Affairs National Center for Cost Containment, 1997). Given the complexity and importance of a capacity determination, an experienced professional should be consulted.
Dignity. An individual’s personal definition of dignity and which conditions or situations lead to indignity can have a tremendous impact on end-of-life decision-making (Cohen et al., 2000; Kade, 2000; Lavery et al., 2001).What may be considered undignified for one person can be acceptable to another, or what was unacceptable to a person at one point may become acceptable after some time has passed. Issues of dignity are a function of the person’s culture and unique value structure and should be reviewed repeatedly, as new challenges and changes occur.
Existential issues and spiritual beliefs. Many dying people have existential and spiritual concerns (Block & Billings, 1998; Daaleman & VandeCreek, 2000; Strang, 1997). Exploring the meaning of life and death, the purpose of one’s life, the legacy one leaves behind, and how to reach a sense of completion are often issues with which terminally ill people struggle (Block, 2001).These existential issues are often intertwined with spiritual beliefs related to one’s place in the world, how one should go through the dying process, beliefs about reward and punishment in an afterlife, surrender to or anger at a Higher Power, and what happens after death. Existential and spiritual attitudes and values are shaped by cultural background, personal experience, and/or individual beliefs and therefore are likely to diverge from what members of the health care team believe, but must be recognized and respected. Quality end-of-life care should include exploration of these domains.
Fear. Associated with diagnosable anxiety disorders is fear, because the latter can lead to the former. Fear associated with an uncertain future are often listed by people as reasons why they would consider taking an action that would affect the timing of death (Strang, 1997). Fears of loss of control, intractable suffering, and being a burden are among the most common specific concerns mentioned by people desiring death (Coombs Lee & Werth, 2000; Ganzini et al., 2000; Hedberg et al., 2002; Sullivan et al., 2000; 2001).However, as will be mentioned below, research indicates that the dying person’s fear of becoming burdensome to loved ones often is not matched by concomitant reluctance of significant others to be caretakers (e.g., Beery et al., 1997).
Grief. Loss is at the core of terminal illness (Block, 2001; Rando, 1984).The terminally ill person faces an array of losses that commonly give rise to psychological suffering severe enough that death may appear to be preferable. In addition to the anticipated loss of relationships, as the world narrows with disease progression, the patient also loses current relationships. Further, the person loses social and occupational roles, and expectations and hopes for the future (Block & Billings, 1998). Similarly, loved ones will be grieving over the loss of the dying person (Beder, 1998; Rando, 2000; Werth, 1999b). As mentioned above, differentiating grief and depression can be difficult.
Hopelessness. An impressive research literature has documented that suicidality and completed suicide among the medically well are more closely associated with hopelessness than with clinical depression (Beck et al., 1985; Hill et al., 1988). Related work on the presence of hopelessness has been done with people who are seriously or terminally ill. Several research teams have found that ill individuals who have a desire for death or an interest in dying appear to have serious levels of hopelessness (Breitbart et al., 2000; Chochinov et al., 1998; Ganzini et al., 1998).Although some may argue that hopelessness is logical for someone who is in the end stages of a terminal illness, it is important to distinguish between accepting that there is no realistic hope for a cure and believing that there is no hope for a decent quality of life and death. Neither clinical depression nor hopelessness are inevitable aspects of the dying process (Block, 2000).
Psychodynamic issues and counter-transference. Some theorists have explored the potential role that psychodynamic issues may play in end-of-life decision-making (Muskin, 1998). Clinicians have stated that some dying individuals have neither the time nor the energy to fully explore or resolve deep-seated psychodynamic matters (Levy, 1990).The effects of countertransference by members of the treatment team related to dying and their acceptance of death by clients, including those who have not ‘worked through’ their issues, have not been as fully explored (Dinwiddie, 1999; Jamison, 1997; Maddi, 1990). Nonetheless, the treatment team should be aware of their own, the dying person’s, and the significant others’ beliefs and unresolved issues or conflicts including, but not limited to, feelings about death that may affect treatment decisions (Block & Billings, 1998).
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