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

Abstract

Background: Although dignity is increasingly considered a goal of palliative care, little research has evaluated the understanding of dignity at the end of life from a caregiver's perspective. Objective: The study objective was to investigate and compare the views of trained volunteers and SCEN physicians on maintaining dignity for patients reaching the end of life. Design: The study is a survey questionnaire study. Subjects: Subjects were two groups of caregivers involved in care for dying patients: trained volunteers (n = 236) and end-of-life consultants (SCEN physicians; n = 427). Measurements: Measurement was done via the Dutch version of the 22-item Patient Dignity Inventory on symptoms and experiences that have been shown to influence the sense of dignity in terminally ill patients. Respondents were asked to rate on a five-point scale the extent to which they considered the items as influential on dignity in terminally ill patients, and as problematic in practice in maintaining dignity for patients in the last phase of life. Results: Overall, volunteers indicated items more frequently as influential to dignity and as problematic in maintaining dignity at the end of life, compared to SCEN physicians. Volunteers gave significantly higher ratings than SCEN physicians to most of the social items, and to half of the psychological and existential items. Conclusions: It seems that SCEN physicians consider the physical aspects of suffering to be most influential and problematic in practice in preserving dignity, while volunteers think psychosocial aspects are most important in preserving dignity at the end of life. These findings suggest that the role and responsibilities of caregivers involved in care for terminally ill patients affect the factors that they think influence dignity.

Dignity and Distress towards the End of Life across Four Non-Cancer Populations

“…The PDI is a novel screening instrument tapping into multiple sources of distress salient for patients with limited life expectancies[ 17 ]. The PDI has been validated in multiple languages and applied in various palliative care settings and studies worldwide [ 18 – 24 ]. One national study reported that amongst patients with varying stages of cancer, the PDI readily helped clinicians identify dignity related distress.…”

Dignity and Psychosocial-Related Variables in Advanced and Nonadvanced Cancer Patients by Using the Patient Dignity Inventory-Italian Version

“…Also, the PDI was found to be helpful in showing that physicians tend to have a limited vision of dignity, wherein they consider the physical aspects of suffering most influential in preserving dignity, whereas caregivers tend to underline the significant role of psychosocial aspects in preserving dignity at the end of life. 10 Given the importance of preserving dignity in health care systems, the PDI has been translated and validated in several countries to test its role from a cross-cultural perspective. Studies carried out in Italy, 11 Germany, 12 The Netherlands, 13 and Spain 14 have shown the PDI to have good psychometric properties.…”

Nursing home staff’s views on residents’ dignity: a qualitative interview study

“…Both were concerned with physical as well as psychosocial aspects influencing dignity. Earlier research in other contexts showed that physicians mainly focussed on physical aspects of suffering and less on psychosocial aspects [ 23 , 24 ]. The way in which the Dutch nursing home system is organized, i.e.…”