Factors influencing dialysis patients' completion of advance directives.

Although chronic dialysis patients support the use of advance directives, they rarely complete them. We asked 80 chronic dialysis patients (60 receiving in-center hemodialysis and 20 receiving peritoneal dialysis) why they had not completed an advance directive, and gave them the opportunity to complete a dialysis-specific living will and to designate a health care proxy. Questionnaires containing the dialysis-specific living will, patient demographic information, and questions about advance directives were distributed during a routine hemodialysis session or peritoneal dialysis clinic visit by a nurse working in the unit. Forty-one hemodialysis patients and 14 peritoneal dialysis patients completed the questionnaires (69% response rate). The mean age was 53 +/- 15 years and the mean time on dialysis was 5 +/- 5 years. Fifty-eight percent of the patients were women, 57% were white, 67% were hospitalized in the past year, 23% were employed, 70% had children, and 21% lived alone (43% lived with a partner and 11% lived with parents). All patients thought advance directives were a good idea, but only 35% had completed one and only seven (14%) had discussed wishes for life-sustaining therapy with their nephrologist; 34 patients (67%) had discussed their wishes with their family. Most said they had not completed an advance directive because their family knew what they would want (12 of 32 patients [38%]). Thirty-nine patients who completed the questionnaire also completed the dialysis-specific living will (71%). Those who did not complete the dialysis-specific living will chose not to because they were not sure what they would want done (12 of 16 patients [75%]). The only demographic factor that influenced completion of the dialysis-specific living will was having children: more patients with children did not complete the will (12 of 37 patients [32%] with children v two of 16 patients [13%] without children; P = 0.02). The dialysis-specific living will asks about choices for life-sustaining treatment (cardiopulmonary resuscitation and dialysis) based on one's health state (current health; permanent coma; terminal illness; mild, moderate, or severe stroke; dementia). Using patient-specific advance directives that focus on health states rather than life-sustaining interventions (eg, the dialysis-specific living will) and repeated discussion of advance directives and advance care planning initiated by dialysis unit staff may improve the completion of advance directives by chronic dialysis patients. The appropriate focus of such issues should include family involvement and health states rather than treatment interventions.

Patients' views in the choice of renal transplant.

Little is known about chronic dialysis patients' reasons for electing renal transplantation. We investigated chronic dialysis patients' reasons for choosing to be listed or not listed for renal transplantation. Chronic dialysis patients were asked to complete a questionnaire consisting of demographic information and questions related to desire for transplantation and previous transplant experience. The mean age of the dialysis population was 48 +/- 15 years (range 16 to 81 years); the population was 61% women, 39% African American, and 26% diabetic. The questionnaires of the 95 patients eligible for transplantation were analyzed. Forty-four percent of the eligible patients were active on a transplant waiting list; 56% of patients refused transplantation. Twenty-nine percent of the surveyed patients had had at least one previous transplant. Listed patients were younger (43 vs. 52 years), had fewer years of ESRD (5 vs. 9 years), and were more likely to be on home dialysis therapy (55% vs. 32%). There were no differences between listed and unlisted patients in gender, race, years of education, marital status, children, diabetes mellitus, and previous transplant experience. African American patients reporting strong religious beliefs were less likely to be listed for transplantation (76% vs. 24%); religious beliefs were not related to white patients' listing for transplantation. The most reported reason for electing transplantation was "hoping for a better quality of life" (86% of respondents). More never-transplanted patients elected transplantation "hoping it will make me live longer" (69% vs. 25% with previous transplant) and because their doctor (50% vs. 6%) or family (42% vs. 6%) thought it was a good idea. Of patients who declined transplant, 92% with previous transplant experience indicated that the experience discouraged them from seeking retransplantation; 59% of patients without transplant experience reported that seeing what happened to others with a failed transplant affected their decision not to seek transplantation. Our findings suggest that race and gender differences in electing transplant may disappear when all patients are actively solicited for transplantation. However, older patients may be less likely to elect transplant because they are more satisfied with life on dialysis or less willing to take risks. Further study of patients' reasons for electing transplantation is required before demographic variations in transplant choices can be accurately interpreted.