Assessment of Patient Dignity in Geriatric Palliative Care

End-of-life care over the last decade has increasingly focused on preservation of dignity to improve quality of life and reduce distress, but the prevalence of dignity-related distress in individuals receiving palliative care has received little research attention. It has been reported that fewer than 10% of individuals with cancer rated loss of dignity a problem.1 Similarly, studies using the Patient Dignity Inventory (PDI)2 suggest that individuals with cancer receiving palliative care in the community or hospital experience little dignity-related distress.3, 4 Whether these findings are applicable in the setting of an inpatient geriatric palliative care unit is unknown. The PDI was administered to 27 older adults (14 men, mean age 80.4 ± 9.8, mean Palliative Performance Scale score = 49.2 ± 9.3%) admitted to an inpatient palliative care unit in a tertiary care geriatric hospital. Primary admitting diagnoses were cancer (n = 23), congestive heart failure (n = 3), and beta-thalassemia disease (n = 1). Twenty-five individuals had died by study end (mean duration of survival 106 ± 72.9 days from time of testing). The PDI is a 25-item self-report questionnaire that assesses the degree to which terminally ill individuals have concerns relevant to personal dignity (Table 1). The scale has been demonstrated to have high internal consistency and test–retest reliability. Factor analysis of the PDI identified five components: symptom distress, existential distress, dependency, peace of mind, and social support. The PDI has been used to study dignity-related distress in residents of nursing homes5 and in individuals with advance directives.6 Participants also completed the Hospital Anxiety and Depression Scale (HADS), a measure with high reliability and validity in a broad range of medically ill populations, including palliative care settings,7 and the Edmonton Symptom Assessment Scale (ESAS),8 a standard 10-item symptom screening tool used in palliative care settings to rate physical (ESAS-Phy; pain, activity, nausea, drowsiness, appetite, dyspnea) and psychological (ESAS-Psy; depression, anxiety, well-being items) symptoms. The Baycrest research ethics board approved this study. All participants provided written informed consent before study entry. Participants reported an average of 7.8 ± 7.5 problems on the PDI. Mean ratings of each item on the PDI, the proportion of individuals who rated the item as being a problem (rating ≥ 3), and means for each subscale on the PDI are summarized in Table 1. Items on the PDI associated with dependency (42%) and symptom distress (39%) were most frequently identified as significant problems, followed by existential distress (35%) and peace-of-mind concerns (25%). Few identified social support as a problem. Mean PDI total scores significantly correlated with anxiety and depression (HADS anxiety; correlation coefficient r = 0.69, P < .001; HADS depression; r = 0.56, P = .003; ESAS-Psy; r = 0.62, P = .001) and physical symptoms (ESAS-Phy; r = 0.45, P = .01). Contrary to previous investigations of dignity in terminally ill individuals in hospital and community settings,3, 4 this pilot study suggests that dignity-related distress is highly prevalent in geriatric palliative care inpatients, although the specific dignity-relevant concerns identified were remarkably consistent with those found in previous studies.3, 4 In all three studies, the five most problematic issues that individuals receiving palliative care experienced were physically distressing symptoms, followed by “no longer feeling like who I was,” “not able to carry out important roles,” “not able to perform tasks of daily living,” and “not able to continue usual routines.” The five least problematic in all three studies were “not feeling supported by healthcare providers,” “not feeling supported by friends or family,” “not being treated with respect,” “concerns about spiritual life,” and “not being able to accept things as they are.” The consistency in frequency of problems endorsed on the PDI across studies is striking and surprising, given the differences in sample size, clinical settings, primary diagnoses, and age range. These similarities suggest the feasibility of developing standardized mental health protocols as part of palliative care, similar to the pain or sedation protocols used in hospice or inpatient palliative care settings. A number of psychotherapies have been developed to address end-of-life concerns in terminally ill individuals, but their efficacy and applicability in a range of palliative care settings have yet to be established (see review9). Determining the prevalence of specific dignity-related concerns may help identify common core themes to target in developing psychotherapeutic interventions for palliative care. Furthermore, given that the controversial use of palliative sedation in managing existential distress is, in part, due to a poorly defined construct,10 objective measures of psychological suffering such as the PDI may help establish clearer guidelines for the use of palliative sedation for psychological symptoms in terminally ill individuals. We thank the Baycrest Department of Psychiatry for supporting this study. Conflict of Interest: The authors have no financial or personal conflicts of interest to declare. This work was supported by the Geoffrey H. Wood Foundation (Linda Mah), Baycrest Department of Psychiatry Academic Development Fund (Cindy Grief). Linda Mah: Is partially supported by the Geoffrey H. Wood Foundation and Baycrest Department of Psychiatry Academic Development Fund, the Scottish Rite Charitable Foundation, the University of Toronto Dean's Fund, and the Ministry of Health and Long-Term Care Academic Funding Plan Innovation Fund. Cindy Grief: Baycrest Department of Psychiatry Academic Development Fund and Ministry of Health and Long-Term Care Academic Funding Plan Innovation Fund. Daphna Grossman: Ministry of Health and Long-Term Care Academic Funding Plan Innovation Fund. Mark Rootenberg: Baycrest Department of Psychiatry Academic Development Fund. Author Contributions: LM, CG, DG: Conception and design of the study. MR: Acquisition of data. LM: Statistical analysis and interpretation of results. All authors contributed to the drafting and approval of the final manuscript. Sponsor's Role: The sponsors had no involvement in any aspect of the research or manuscript preparation.

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