title: Burden to others and the terminally ill.
abstract: Studies of patients who are terminally ill consistently identify strong associations between "sense of burden to others" and marked end-of-life distress. However, little research has addressed the issue of burden to others among patients nearing death. The aim of this study was to carefully examine "burden to others" and clarify its relationship with various psychosocial, physical, and existential issues arising in patients who are terminally ill. A cohort of 211 patients with end-stage cancer was assessed, using an assortment of validated psychometrics to document psychosocial, physical, and existential aspects of their end-of-life experience. This included an assessment of their sense of "burden to others." Forty percent of participants indicated a negligible sense of burden to others, scoring within the lowest quarter on an ordinal measure of "burden to others;" 25% scored within the second lowest quarter; 12% within the third quarter; and 23% within the highest or most severe range. The most highly correlated variables with "sense of burden to others" included depression (r=0.460; df=201, P<0.0001), hopelessness (r=0.420; df=199, P<0.0001), and outlook (r=0.362; df=200, P<0.0001). Four variables emerged in a multiple regression analysis predicting burden to others, including hopelessness, current quality of life, depression, and level of fatigue [R(2) adj=0.32, F(6,174)=13.76, P<0.0001]. There was no association between sense of burden to others and actual degree of physical dependency. Feeling a sense of burden to others is common among dying patients. Although 40% of the sample reported little in the way of sense of burden to others, the remainder endorsed higher degrees of burden-related distress, with 23% scoring within the most severe range. The lack of association between "sense of burden to others" and the degree of physical dependency suggests this perception is largely mediated through psychological and existential considerations. Strategies that target meaning and purpose, depression, and level of fatigue could lessen this source of distress and enhance quality, dignity-conserving care.
authors.affiliation: Department of Psychiatry, University of Manitoba, Winnipeg, Manitoba, Canada. harvey.chochinov@cancercare.mb.ca
authors.forename: Harvey Max
authors.initials: HM
authors.lastname: Chochinov
authors.forename: Linda J
authors.initials: LJ
authors.lastname: Kristjanson
authors.forename: Thomas F
authors.initials: TF
authors.lastname: Hack
authors.forename: Thomas
authors.initials: T
authors.lastname: Hassard
authors.forename: Susan
authors.initials: S
authors.lastname: McClement
authors.forename: Mike
authors.initials: M
authors.lastname: Harlos
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000368:Aged; D017281:Cost of Illness; D005260:Female; D006801:Humans; D008297:Male; D008350:Manitoba; D009369:Neoplasms / Q000150:complications; D009483:Neuropsychological Tests; D010166:Palliative Care; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology; D013727:Terminal Care / Q000523:psychology*