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Section 14
Psychosocial Issues Near the End of Life

Question 14 | Test | Table of Contents

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.

Introduction
End-of-life care has been receiving a significant and growing amount of attention from a variety of sources (e.g., Field & Cassel, 1997); however, much of the emphasis has been on the medical aspects of caring for the terminally ill, with significantly less attention on the relevant psychosocial issues (Working Group on Assisted Suicide and End-of-Life Decisions [Working Group], 2000).This is unfortunate because of the important role that psychological and interpersonal
factors play during the dying process (e.g., Block, 2001; Cherny et al., 1994a; 1994b; Emanuel & Emanuel, 1998; International Work Group on Death, Dying, and Bereavement, 1993; National Institutes of Health [NIH], 1997; Pasacreta & Pickett, 1998; Steinhauser et al., 2000;Vachon et al., 1995;Working Group, 2000). In fact, the World Health Organization (1990, p. 11) has stated that, ‘control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount’ in palliative care. Thus, although physical problems are important and should often take first priority, truly comprehensive end-of-life care requires that psychosocial matters be assessed and addressed. The purpose of this paper is to provide an overview of the degree to which psychosocial issues—psychological, ‘emotional, intellectual, spiritual, interpersonal, social, cultural, and economic dimensions of the human experience’ (International Work Group on Death, Dying, and Bereavement, 1993, pp. 29)—are critical near the end of life, review those that commonly arise, and highlight some of the many ways in which mental health professionals can be a valuable part of multidisciplinary teams providing quality end-of-life care (American Geriatrics Society [AGS] Ethics Committee, 1998; Singer et al., 1999).The focus will be on adults who have the capacity to make health care decisions or about whom such capacity is in question because (1) decisions regarding treatment of incapacitated adults involve other considerations (Buchanan & Brock, 1989; Karlawish et al., 1999) and (2) end-of-life issues with children entail other legal, ethical, and clinical dimensions (Van der Feen & Jellinek, 1998;Wolfe et al., 2000).

Psychosocial issues
There are a number of psychosocial issues that must be assessed for and, if present, addressed in order to alleviate the suffering a dying person experiences and maximize his or her quality of life. A complete discussion of all of them is beyond the scope of this paper, but the most common, debilitating, and/or ameliorable ones are highlighted (see, e.g., Chochinov & Breitbart, 2000; Steinberg & Youngner, 1998).

Diagnosable mental disorders 
Several conditions listed in the Diagnostic and Statistical Manual of Mental Disorders, IV (American Psychiatric Association, 1994) can be present in people who are dying, and research has indicated that some of the diagnoses may be fairly common in this population. This section highlights those diagnoses that have been documented through research, or proposed in theory, to be especially relevant when a person is dying. The focus will be on conditions associated with the dying process as opposed to preexisting diagnoses.

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).
- Werth, J., Gordon, J., & R. Johnson; Psychosocial Issues Near the End of Life; Aging & Mental Health; Nov. 2002, Vol. 6, Issue 4.

Personal Reflection Exercise #5
The preceding section contained information about psychosocial issues near the end of life. Write three case study examples regarding how you might use the content of this section in your practice.
Reviewed 2023

Update
Psychosocial Issues and Concerns
of Cancer Patients due
to COVID-19 Pandemic Lockdown

- Veeraiah, S., Chidambaram, S., Sudhakar, R., Ganesharaja, S., Krishnamurthy, A., Dhanushkodi, M., & Swaminathan, R. (2022). Psychosocial issues and concerns of cancer patients due to COVID-19 pandemic lockdown. PLOS global public health, 2(9), e0000996.

Peer-Reviewed Journal Article References:
McGee, J. S. (2019). Illuminating Alzheimer’s disease. Families, Systems, & Health, 37(3), 273.

Peters-Founshtein, G., Peer, M., Rein, Y., Kahana Merhavi, S., Meiner, Z., & Arzy, S. (2018). Mental-orientation: A new approach to assessing patients across the Alzheimer’s disease spectrum. Neuropsychology, 32(6), 690–699.

Singh, M. (2019). Dementia—They say. Families, Systems, & Health, 37(3), 267–269.

QUESTION
What is "pseudodementia"? To select and enter your answer go to Test.

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