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

Abstract

ObjectiveThe purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations.DesignA prospective, multi-site approach was used.SettingOutpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada.ParticipantsPatients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly.Main Outcome MeasureIn addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI).ResultsBetween February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4–11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress.ConclusionPeople with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs.

Czech Version of the Patient Dignity Inventory: Translation and Validation in Incurable Patients

“…9,11e13 This instrument makes it possible to compare sources of dignityrelated distress among patients with terminal stage cancer and noncancer illnesses from different countries. 17,20,25 The participants selected for our study were incurably ill cancer and noncancer patients because previous study confirmed PDI feasibility for noncancer patients and older frail adults. 20 In this study, the basic standard psychometric properties of the PDI were examined.…”

“…This instrument can be used as a screening method, not only in clinical practice, but also in research, which focuses on understanding the problems influencing patient dignity in the early and late stages of cancer, 15e19 in terminal stages of noncancer illnesses, and in severe geriatric frailty. 3,20,21…”

Evaluating a dignity care intervention for palliative care in the community setting: community nurses’ perspectives

“…For example, in comparison with the other groups, the frail elderly patients were most likely to identify ‘not being able to attend to my bodily functions independently’ as problematic (Chochinov et al . ).…”

Concept analysis of dignity‐centered care for people with chronic progressive disease

“…Multilayered distress exemplifies the complex presence of physical, psychological and existential distress (Albers et al, 2013;Chochinov et al, 2016;Solomon et al, 2016), stemming from loss of the sense of self (Monaro et al, 2014), bodily changes evident to others, and changes in one's appearance (Olsson et al, 2008;Solomon et al, 2016). These individuals also reported feeling ashamed, degraded, or embarrassed because of the stigma from their medical problems (Solomon et al, 2016).…”