Adapting Meaning-Centered Psychotherapy for the palliative care setting: Results of a pilot study.

AIMS: To establish preliminary evidence for the feasibility, acceptability, and utility of an abbreviated version of Meaning-Centered Psychotherapy tailored to the needs of palliative care patients in the final weeks or months of life. BACKGROUND: Surprisingly, few mental health interventions have specifically targeted the psychological needs of palliative care patients, when physical comfort seems to take precedence over mental health and emotional needs. Yet the need for mental health services targeting these patients is clear, as one in three palliative care patients experience clinically significant depression and an equal proportion experience clinically significant anxiety. DESIGN: This pilot study used an open-label design to assess the feasibility, acceptability, and perceived utility of Meaning-Centered Psychotherapy-palliative care, a brief intervention that focuses on enhancing meaning at the end of life. SETTING/PARTICIPANTS: A total of 12 patients admitted to a palliative care hospital for supportive care consented to participate in the study. RESULTS: Of the 11 patients that began treatment (one patient died before the first session), 8 completed the three-session intervention. Patients expressed positive feedback about the structure, focus, and length of the intervention, but varied in precisely which elements they found most helpful. CONCLUSION: An abbreviated version of Meaning-Centered Psychotherapy tailored to the needs of palliative care patients (Meaning-Centered Psychotherapy-palliative care) appears to be feasible, acceptable, and has the potential to help patients better cope with the challenges inherent in confronting death and dying. Further research, with larger and more representative samples, is needed in order to clarify the strengths and weaknesses of this approach.

Burden and benefit of psychosocial research at the end of life.

BACKGROUND: The impact of psychosocial research participation has not been examined systematically in palliative care settings. Concerns are often raised regarding the potential for distress among terminally ill patients. This is particularly true when death and dying are the focus of research. Therefore, it is important to understand the specific ways psychosocial research could potentially harm or be helpful to participants. OBJECTIVE: To assess the burden and benefits of participation in psychosocial research addressing end-of-life issues among patients receiving inpatient palliative care. DESIGN: Sixty-eight terminally ill patients with cancer who had an average life expectancy of less than 2 months, were administered a brief self-report questionnaire to assess whether participation in psychosocial research was burdensome and/or beneficial. The specific factors that contributed to their perceptions were also identified. RESULTS: The majority of patients reported no burden associated with participation (75%) and found the experience as moderately to highly beneficial (68%). Factors most frequently identified as burdensome included the length of the interview (21%), structure of the questionnaires (18%), and difficulty discussing end-of life issues (12%). Although some patients reported some distress while discussing end-of-life issues (19%), few endorsed a high level of distress (6%). Factors most frequently identified as beneficial were the social interaction (75%), sense of contributing to society (57%), and the opportunity to discuss their illness (47%). CONCLUSIONS: Participants in psychosocial end-of-life research are unlikely to experience significant burden from participation and, in fact, may benefit.

Assessing decision-making capacity at end of life.

OBJECTIVE: Patients with terminal illness often face important medical decisions that may carry ethical and legal implications, yet they may be at increased risk for impaired decisional capacity. This study examined the prevalence of impairment on the four domains of decisional capacity relevant to existing legal standards. METHOD: Twenty-four adults diagnosed with a terminal illness completed the MacArthur Competence Assessment Tool for Treatment, a semi-structured measure of decision-making capacity and measures of cognitive functioning and psychological distress. RESULTS: Approximately one third of the sample demonstrated serious impairment on at least one domain of decisional capacity. The greatest proportion of impairment was found on subscales that rely heavily on verbal abilities. Decisional capacity was significantly associated with cognitive functioning and education, but not with symptoms of anxiety or depression. CONCLUSIONS: This study is the first to examine decisional capacity in patients with terminal illness relative to legal standards of competence. Although not universal, decisional impairment was common. Clinicians working with terminally ill patients should frequently assess capacity as these individuals are called on to make important medical decisions. Comprehensive assessment will aid clinicians in their responsibility to balance respect for patient autonomy with their responsibility to protect patients from harm resulting from impaired decisional capacity.

Does desire for hastened death change in terminally ill cancer patients?

Understanding why some terminally ill patients may seek a hastened death (a construct referred to as "desire for hastened death" or DHD) is critical to understanding how to optimize quality of life during an individual's final weeks, months or even years of life. Although a number of predictor variables have emerged in past DHD research, there is a dearth of longitudinal research on how DHD changes over time and what factors might explain such changes. This study examined DHD over time in a sample of terminally ill cancer patients admitted to a palliative care hospital. A random sample of 128 patients completed the Schedule of Attitudes toward Hastened Death (SAHD) at two time points approximately 2-4 weeks apart participated. Patients were categorized into one of four trajectories based on their SAHD scores at both time points: low (low DHD at T1 and T2), rising (low DHD at T1 and high DHD at T2), falling (high DHD at T1 and low DHD at T2) and high (high DHD at T1 and T2). Among patients who were low at T1, several variables distinguished between those who developed DHD and those who did not: physical symptom distress, depression symptom severity, hopelessness, spiritual well-being, baseline DHD, and a history of mental health treatment. However, these same medical and clinical variables did not distinguish between the falling and high trajectories. Overall, there appears to be a relatively high frequency of change in DHD, even in the last weeks of life. Interventions designed to target patients who are exhibiting subthreshold DHD and feelings of hopelessness may reduce the occurrence of DHD emerging in this population.

Anxiety in terminally ill cancer patients.

CONTEXT: Anxiety in terminal cancer is linked to diminished quality of life, yet overall it is poorly understood with regard to prevalence and relationship to other aspects of psychological distress. OBJECTIVES: This study examines anxiety in terminally ill cancer patients, including the prevalence of anxiety symptoms, the relationship between anxiety and depression, differences in anxiety between participants receiving inpatient palliative care and those receiving outpatient care, and characteristics that distinguish highly anxious from less anxious patients. METHODS: Participants were 194 patients with terminal cancer. Approximately half (n=103) were receiving inpatient care in a palliative care facility and half (n=91) were receiving outpatient care in a tertiary care cancer center. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression, and was administered along with measures of hopelessness, desire for hastened death, and social support. RESULTS: Moderately elevated anxiety symptoms were found in 18.6% of participants (n=36) and 12.4% (n=24) had clinically significant anxiety symptoms. Level of anxiety did not differ between the two treatment settings. However, participants receiving palliative care reported significantly higher levels of depression and desire for hastened death. A multivariate prediction model indicated that belief in an afterlife, social support, and anxiolytic and antidepressant use were unique, significant predictors of anxiety. CONCLUSION: Severity of anxiety symptoms did not differ between the study sites, suggesting that anxiety may differ from depression and desire for hastened death in the course that it takes over the duration of terminal cancer.

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.