Decision-making capacity in elderly, terminally ill patients with cancer

Despite the importance and complexity of evaluating decision-making capacity at the end of life, little research has focused on terminally ill patients' decision-making ability. The purpose of this study was to explore the decision-making capacity of elderly, terminally ill patients and the psychological and physical factors that affect decision making. Decision-making capacity and cognitive abilities were assessed using four measures: the Hopkins Competency Assessment Kit, the Bechara Gambling Task, the Concept Assessment Kit, and the Mini Mental Status Exam. In addition, symptoms of depression, level of physical functioning, and extent of physical symptoms were evaluated in order to identify correlates of decision-making ability. Two samples were compared: elderly, terminally ill patients with cancer (n = 43) and elderly, physically healthy adults living in supportive community residence (n = 35). Results revealed significantly poorer decision-making abilities among the terminal ill sample compared with healthy comparisons, but no association between demographic variables (e.g., age, race, or education) or clinical variables (depression or physical symptoms) and decision making. Implications for evaluating decision-making capacity are addressed.     

Confronting death: Group psychotherapy with terminally ill individuals

A model for group psychotherapy with terminally ill patients is proposed, one in which the group is homogeneous and open-ended. Cancer and HIV infection are used as examples of chronic, terminal illnesses, and the relevant literature on group psychotherapy with these conditions is reviewed. Treatment with both sets of patients has been characterized by considerable variation in the structure, composition, and duration of the group. Being diagnosed with a terminal illness is traumatic and leads to denial, which may be adaptive or maladaptive depending upon its behavioral manifestations. The homogeneous, open-ended group encourages adaptive denial, which fuels hope and the will to live. The mechanism through which this occurs involves the unconscious identification with the group as an entity. This causes the emergence of a fantasy of a mother-infant dyad, within which can occur reworking of the depressive position. Scheidlinger, Turquet and Anzieu are cited to demonstrate this unconscious function of the group. Finally, clinical implications of such a model are highlighted.     

Volunteer support, marital status, and the survival times of terminally ill patients.

This study examines the possibility that volunteer support can influence how long terminally ill patients survive. Hospice patient files (N = 290) were coded for marital status and volunteer support condition, respectively, the latter on the basis of whether visits from volunteers were requested and received (n = 94), requested but not received (n = 28), or neither requested nor received (n = 168). Baseline health, disease type, and demographic dimensions were comparable across support conditions. Results indicated that when a baseline health status effect was controlled for (p<.0002), patients in the volunteer support condition survived significantly longer than did patients in either unvisited condition (p<.0001). Neither marital status nor gender independently predicted survival time.     

Assessing hopelessness in terminally ill cancer patients: development of the Hopelessness Assessment in Illness Questionnaire

Hopelessness has become an increasingly important construct in palliative care research, yet concerns exist regarding the utility of existing measures when applied to patients with a terminal illness. This article describes a series of studies focused on the exploration, development, and analysis of a measure of hopelessness specifically intended for use with terminally ill cancer patients. The 1st stage of measure development involved interviews with 13 palliative care experts and 30 terminally ill patients. Qualitative analysis of the patient interviews culminated in the development of a set of potential questionnaire items. In the 2nd study phase, we evaluated these preliminary items with a sample of 314 participants, using item response theory and classical test theory to identify optimal items and response format. These analyses generated an 8-item measure that we tested in a final study phase, using a 3rd sample (n = 228) to assess reliability and concurrent validity. These analyses demonstrated strong support for the Hopelessness Assessment in Illness Questionnaire providing greater explanatory power than existing measures of hopelessness and found little evidence that this assessment was confounded by illness-related variables (e.g., prognosis). In summary, these 3 studies suggest that this brief measure of hopelessness is particularly useful for palliative care settings. Further research is needed to assess the applicability of the measure to other populations and contexts.     

Statutory definitions of death and the management of terminally ill patients who may become organ donors after death

The law stipulates that death is irreversible. Patients treated in accord with the Pittsburgh protocol have death pronounced when their condition might well be reversed by intervention that is intentionally withheld. Nevertheless, the protocol is in accord with the medical "Guidelines for the Determination of Death." However, the Guidelines fail to capture the intent of the law, which turns out to be a good thing, for the law embodies a faulty definition of death. The inclusion of "irreversible" in the legal definition makes that definition excessively demanding and out of step with the ordinary concept of death. On this basis the protocol is absolved of the moral but not the legal charge that it involves vivisection.     

A burden to others: a common source of distress for the terminally ill

Recent research into the desire for death among people with terminal illness has begun to recognize the importance of "feeling oneself a burden to others" as a factor in suicidal behaviour. In this study, 69 patients with advanced cancer underwent semi-structured interviews. The sense of self-perceived burden was found to be a common experience, reported by 39.1% of participants as a minimal or mild concern and by 38% as a moderate to extreme concern. The sense of burden showed a low correlation with physical symptoms (r = 0.02-0.24) and higher correlations with psychological problems (r = 0.35-0.39) and existential issues (r = 0.45-0.49). Comparisons of participants with high or low levels of self-perceived burden showed the importance of this factor for overall quality of life. In summary, self-perceived burden is an important but underestimated dimension of social cognition in the medically ill.     

Developmental and individual differences in performance on phonological synthesis tasks

This study was conducted in order to examine the role of individual differences in working memory and lexical access in accounting for age and reading skill related differences in performance on phonological synthesis tasks. The performance of 28 kindergarten, first-, and second-grade children with normal reading skills, as well as that of 28 reading-disabled second graders, was compared under four testing conditions. The testing conditions were formed by completely crossing rate of presentation of phoneme strings with type of stimulus to be blended (real or nonword). Both independent variables affected performance on the blending tasks, with better performance obtained at faster presentation rates and with real words. There was a developmental discontinuity in overall performance, with the kindergarten children obtaining substantially lower scores than the first or second graders. In the comparison of second-grade good and poor readers, there was a significant interaction between groups, presentation rates, and type of stimulus. The findings are discussed in terms of their implications for a general model of performance on the sound blending task, as well as their value for interpreting individual differences on the task.     

Life review in pastoral counseling: background and efficacy for use with the terminally ill

Research continues to confirm that sharing one's life story through the process of life review enhances psychological well-being and increases life satisfaction. Although researchers have outlined techniques and activities that may be used in life review with older adults, little work has focused on the use of life review methods with terminally ill patients. Additionally, researchers have suggested that life review can take on the form of a spiritual assessment; and that such spiritually oriented life reviews may enhance a sense of meaning and foster reconciliation as one approaches dying. In this article, the authors provide a brief review of the research on and the practice of life review. Further, by merging concepts of life review with systematic theology, they offer a sample instrument--using the example of one faith framework--with which pastoral caregivers can better approach the spiritual needs of patients and facilitate a less traumatic death in the terminally ill.     

Death without God: religious struggle, death concerns, and depression in the terminally ill

ABSTRACT— Religious worldviews often provide comfort near the end of life, but they can cause distress if life circumstances are perceived as evidence of God's disfavor. This study, the first to test terror management theory (TMT) with terminally ill participants, examined the hypothesis that concerns about death mediate the relationship between religious struggle (and religious comfort) and depression in the terminally ill. Ninety-eight patients with end-stage congestive heart failure (CHF) completed measures of religious comfort, religious struggle, belief in an afterlife, concerns about death, and depression. In separate hierarchical linear regression models that controlled for degree of belief in an afterlife, death concerns fully mediated the relationships between religious struggle and depression and between religious comfort and depression. These findings suggest that religious struggle is a breakdown in the terror management system that leaves the individual vulnerable to the terror of death, and that properly functioning religious worldviews offer comfort by buffering the individual against death concerns.     

Developmental patterns in the infants and young children of mentally ill mothers

The development of children (ages 2 to 49 months) of mentally ill mothers was compared with that of children of matched “well” mothers. The children of mentally ill mothers scored lower on measures of intelligence and had a less adaptive coping style in the testing situation. The children of “well” mothers were more socially competent; that is, they sought the attention of adults more often, responded more to social initiatives, displayed more positive affect, and sent clearer signals. Clinical data on the children of mentally ill mothers complemented the research data, indicating that these children displayed problems in the areas of interpersonal relationships, verbal-conceptual functioning, attentional skills, and mood and affect.     

Transition,transformation and the art of losing: Some uses of poetry in hospice care for the terminally ill

What lessons for psychotherapy can be drawn from the enjoyment and sustenance we find in the use of literature? This paper looks back on a recent creative writing project undertaken with patients in a hospice day centre, and suggested reasons why the patients found this activity not only enjoyable but also therapeutic. Both the hospice as an institution and the poetic form are defined in terms of a transitional space. The article shows how the act of reading and writing poetry places a value for patients on not knowing at a time when the plain hard facts of terminal illness loom large. The author describes a practical way of engaging with poetry in this context, and uses clinical material to describe how the literary arts can provide a transformational object, and a point of inspiration, that may help patients to negotiate the changes brought about by their illness.