The Patient Dignity Inventory: A Novel Way of Measuring Dignity-Related Distress in Palliative Care

Abstract

Quality palliative care depends on a deep understanding of distress facing patients nearing death. Yet, many aspects of psychosocial, existential and spiritual distress are often overlooked. The aim of this study was to test a novel psychometric--the Patient Dignity Inventory (PDI)--designed to measure various sources of dignity-related distress among patients nearing the end of life. Using standard instrument development techniques, this study examined the face validity, internal consistency, test-retest reliability, factor structure and concurrent validity of the PDI. The 25-items of the PDI derive from a model of dignity in the terminally ill. To establish its basic psychometric properties, the PDI was administered to 253 patients receiving palliative care, along with other measures addressing issues identified within the Dignity Model in the Terminally Ill. Cronbach's coefficient alpha for the PDI was 0.93; the test-retest reliability was r = 0.85. Factor analysis resulted in a five-factor solution; factor labels include Symptom Distress, Existential Distress, Dependency, Peace of Mind, and Social Support, accounting for 58% of the overall variance. Evidence for concurrent validity was reported by way of significant associations between PDI factors and concurrent measures of distress. The PDI is a valid and reliable new instrument, which could assist clinicians to routinely detect end-of-life dignity-related distress. Identifying these sources of distress is a critical step toward understanding human suffering and should help clinicians deliver quality, dignity-conserving end-of-life care.

Personal Dignity in the Terminally Ill from the Perspective of Caregivers: A Survey among Trained Volunteers and Physicians

“…The SCEN physicians see the people who explicitly request euthanasia, i.e., about 7% of all people who die nonsudden deaths in the Netherlands, 25 and judge whether the request is in accordance with criteria for due care. Therefore, SCEN physicians see the more complex medical situations, and in accordance with the study performed by Pasman and colleagues, 19 it seems that physicians focus more on physical suffering. However, as loss of dignity is one of the most frequently mentioned reasons for requesting euthanasia or physician-assisted suicide, 2,6 it is important that SCEN physicians not only focus on physical symptoms but also pay attention to social, existential, and psychological factors that may influence the sense of dignity.…”

“…19 The extent to which the respondents thought that the items have influence on maintaining patients' personal dignity in the last phase of life was rated on a five-point scale (1 = not at all; 2 = slightly; 3 = somewhat; 4 = to a large extent; 5 = to a very large extent). The PDI items were introduced by the following text:…”

“…18 These 22 items formed the PDI prototype which was later revised into the 25-item Patient Dignity Inventory (PDI). 19 Although it is important to understand how patients understand dignity at the end of life, terminally ill patients are often not able to communicate anymore about their preferences for end-of-life care and what supports their personal sense of dignity. As a consequence, family or caregivers might get involved in a complex decisionmaking process and might need to set priorities for care.…”

Perceptions of Iranian Cancer Patients Regarding Respecting their Dignity in Hospital Settings

“…It also revealed that the sense of anxiety and depression, uncertainty regarding the disease and treatments, and worrying about the future were the main symptoms of lack of preserved dignity in this sub-scale. Previous studies also showed that anxiety and depression are the potential symptoms of lack of preserved dignity in cancer patients (Coyle and Sculcoet al, 2004;Chochinov et al, 2008). Cancer patients often experience high levels of anxiety and depression due to pain and physical and psychological suffering that may adversely affect their dignity (Coyle and Sculco et al, 2004).…”

The Patient Dignity Inventory: Just another evaluation tool? Experiences with advanced cancer patients

“…The tool put forward by that author was made up of 25 items in 5 groups (Table 1): symptom distress, existential distress, dependency, peace of mind, and social support (Chochinov et al, 2008;. The original version of the PDI was written and validated in English.…”