title: Life-sustaining treatment preferences of hemodialysis patients: implications for advance directives.
abstract: The purpose of this study was to describe the life-sustaining treatment preferences of dialysis patients and to compare the acceptability of two generic and a disease-specific advance directive (AD). Of 532 potentially eligible hemodialysis patients, 95 (17.9%) participated in the study. These patients completed two generic (the Centre for Bioethics Living Will and the Medical Directive) and one disease-specific (the Dialysis Living Will) AD in a randomized cross-over trial. Treatment preferences were measured by using the Centre for Bioethics Living Will. Acceptability of the AD was measured by using a 13-item advance directive acceptability questionnaire (ADAQ) for each AD, and the advance directive choice questionnaire (ADCQ) to elicit participants' preferred AD. Twenty-five percent of the participants wanted to continue dialysis in case of severe stroke, 19% in severe dementia, and 14% in permanent coma. Averaged across treatments, proportions of participants wanting treatment in various health states were: current health (86%), mild stroke (84%), moderate stroke (60%), severe stroke (21%), mild dementia (78%), moderate dementia (51%), severe dementia (14%), terminal illness (41%), and permanent coma (10%). Averaged across health states, proportions of participants wanting various types of treatment were: dialysis (58%), antibiotics (53%), transfusion (53%), surgery (48%), cardiopulmonary resuscitation (48%), respirator (47%), and tube feeding (41%). Mean ADAQ scores were: Dialysis Living Will, 71%; Centre for Bioethics Living Will, 70%; and Medical Directive, 60% (F = 8.27, P < 0.001 (repeat measures analysis of variance); the Dialysis Living Will and Centre for Bioethics Living Will scored significantly higher than the Medical Directive). The proportion of participants who said they would choose to complete each AD was: Dialysis Living Will, 28%; Centre for Bioethics Living Will, 38%; Medical Directive, 31%; and unsure, 3% (chi 2 = 1.465, df = 2, P = 0.48). In conclusion, twenty-five percent or less of hemodialysis patients want to continue dialysis in three specific health states: severe stroke, severe dementia, and permanent coma. Health states and illness severity, far more than treatment descriptions, influence preferences. Dialysis patients should be offered a generic AD, and some generic AD are more acceptable than others. Only a minority of dialysis patients will complete any AD, but the completion of written AD forms is only one element in the process of advance care planning.
authors.affiliation: Centre for Bioethics, University of Toronto, Ontario, Canada.
authors.forename: P A
authors.initials: PA
authors.lastname: Singer
authors.forename: E C
authors.initials: EC
authors.lastname: Thiel
authors.forename: C D
authors.initials: CD
authors.lastname: Naylor
authors.forename: R M
authors.initials: RM
authors.lastname: Richardson
authors.forename: H
authors.initials: H
authors.lastname: Llewellyn-Thomas
authors.forename: M
authors.initials: M
authors.lastname: Goldstein
authors.forename: C
authors.initials: C
authors.lastname: Saiphoo
authors.forename: P R
authors.initials: PR
authors.lastname: Uldall
authors.forename: D
authors.initials: D
authors.lastname: Kim
authors.forename: D C
authors.initials: DC
authors.lastname: Mendelssohn
mesh_terms: D000293:Adolescent; D000328:Adult; D032722:Advance Care Planning; D016223:Advance Directives; D000368:Aged; D000369:Aged, 80 and over; D018592:Cross-Over Studies; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D011996:Records; D006435:Renal Dialysis / Q000523:psychology*; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D028761:Withholding Treatment