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Multicenter Study
. 2016 Jan 25;11(1):e0147607.
doi: 10.1371/journal.pone.0147607. eCollection 2016.

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

Harvey Max Chochinov  1   2 , Wendy Johnston  3 , Susan E McClement  2   4 , Thomas F Hack  4 , Brenden Dufault  5 , Murray Enns  1 , Genevieve Thompson  2   4 , Mike Harlos  6 , Ronald W Damant  7 , Clare D Ramsey  8   9 , Sara Davison  10 , James Zacharias  9   11 , Doris Milke  12   13   14 , David Strang  15   16 , Heather J Campbell-Enns  2   17 , Maia S Kredentser  2   18
Affiliations
Multicenter Study

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

Harvey Max Chochinov et al. PLoS One. .

Erratum in

Abstract

Objective: The 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.

Design: A prospective, multi-site approach was used.

Setting: Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada.

Participants: Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly.

Main outcome measure: In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI).

Results: Between 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.

Conclusion: People 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.

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Conflict of interest statement

Competing Interests: The authors have declared that no competing interests exist.

References

    1. Fitzsimons D, Mullan D, Wilson JS, Conway B, Corcoran B, Dempster M, et al. The challenge of patients’ unmet palliative care needs in the final stages of chronic illness. Palliat Med. 2007. June;21(4):313–22. - PubMed
    1. Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage. 2006. January;31(1):58–69. - PubMed
    1. McIlfatrick S. Assessing palliative care needs: views of patients, informal carers and healthcare professionals. J Adv Nurs. 2007. January;57(1):77–86. - PubMed
    1. Skilbeck JK, Payne S. End of life care: a discursive analysis of specialist palliative care nursing. J Adv Nurs. 2005. August;51(4):325–34. - PubMed
    1. Luddington L, Cox S, Higginson I, Livesley B. The need for palliative care for patients with non-cancer diseases: a review of the evidence. Int J Palliat Nurs. 2001. May;7(5):221–6. - PubMed

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