LIFE-SUSTAINING TREATMENT PREFERENCES OF HEMODIALYSIS-PATIENTS - IMPLICATIONS FOR ADVANCE DIRECTIVES

The purpose of this study was to describe the life-sustaining treatmen t preferences of dialysis patients and to compare the acceptability of two generic and a disease-specific advance directive (AD). Of 532 pot entially eligible hemodialysis patients, 95 (17.9%) participated in th e study. These patients completed two generic (the Centre for Bioethic s 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 Wil l. Acceptability of the AD was measured by using a 13-item advance dir ective acceptability questionnaire (ADAQ) for each AD, and the advance directive choice questionnaire (ADCQ) to elicit participants' preferr ed AD. Twenty-five percent of the participants wanted to continue dial ysis in case of severe stroke, 19% in severe dementia, and 14% in perm anent coma. Averaged across treatments, proportions of participants wa nting treatment in various health states were: current health (86%), m ild stroke (84%), moderate stroke (60%), severe stroke (21%), mild dem entia (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 feedin g (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%; Centr e for Bioethics Living Will, 38%; Medical Directive, 31%; and unsure, 3% (chi(2) = 1.465, df = 2, P = 0.48). In conclusion, twenty-five perc ent or less of hemodialysis patients want to continue dialysis in thre e specific health states: severe stroke, severe dementia, and permanen t coma. Health states and illness severity, far more than treatment de scriptions, influence preferences. Dialysis patients should be offered a generic AD, and some generic AD are more acceptable than others. On ly a minority of dialysis patients will complete any AD, but the compl etion of written AD forms is only one element in the process of advanc e care planning.