Improving advance care planning by accommodating family preferences.

CONTEXT: Family members often lack the knowledge of patients' values and preferences needed to function well as surrogate decision-makers. OBJECTIVE: To determine whether differences in values and preferences for the advance care planning process may be reasons family members are inadequately informed to act as surrogates. DESIGN: Face-to-face and telephone surveys using structured questionnaires. PARTICIPANTS: Two hundred forty-two pairs of dialysis patients and their designated surrogates. MAIN OUTCOME MEASURES: Content and number of end-of-life care discussions; patient and surrogate attitudes toward having patients express preferences explicitly; factors most important to surrogates in decision making; and within-pair agreement about the values of suffering and certainty. RESULTS: Ninety percent of patients designated a family member as their surrogate. In most cases, having more conversations about end-of-life issues did not increase surrogate knowledge of patients' values or preferences. Surrogates wanted written and oral instructions more often than patients wanted to provide them (62% vs. 39%, p < 0.001). Knowing the patient's wish to stop treatment in the present condition was more important to most surrogates than the physician's recommendation to stop treatment (62% vs. 45%, p < 0.001). Compared to patients, surrogates were less likely to want to prolong the patient's life if it entailed suffering (12% vs. 23%, p < 0.01) and were more concerned about being certain before stopping life-sustaining treatments (85% vs. 77%, p < 0.02). CONCLUSIONS: Differences in preferences for the advance care planning process between patients and their surrogates and failure to discuss specific end-of-life values and preferences may explain why surrogates often lack information needed to serve as surrogate decision-makers.

Inappropriate use of dialysis for some elderly patients: nephrology nurses' perceptions and concerns.

The purpose of this study was to determine what percentage of elderly patients (age 65 years and older) nephrology nurses (NN) believe should not be dialyzed and to identify NN percep tions and concerns about the inappropriate use of dialysis for these patients. The design was descriptive using a cross-sectional survey instrument. Data was collected in 1996 from 393 NN (44% response rate), with a mean age of 41 years and 9 years of dialysis experience. The sample was 1,000 NN randomly selected from 7,000 members of the American Nephrology Nurses'Association (ANNA) who selected hemodialysis as a special area of interest. Quantitative analysis of respondents revealed that NN felt that 15% of elderly dialysis patients (EDP) should not be dialyzed, and 80% were troubled by decisions to start dialysis for some elderly patients. Content analysis of qualitative responses supported the NN concerns revealed in the quantitative analysis. Five themes with interrater reliability of > 98% were identified: qualiy of life (QoL), patient/family inadequate knowledge, patient influences on decision making age, and other (cost/legal reasons). QoL issues accounted for 75% of NN responses. Statistical analyses including an ANOVA, t-tests, and chi square failed to identify relationships between themes and demographic factors, such as age, gender, years of experience, education level, unit profit status, and type of staff position. The researchers conclude that NN believe dialysis is inappropriate for a significant percentage of EDP, these perceptions and concerns are widespread, and QoL issues are key factors in decisions to withhold or withdraw dialysis. NN may decrease the inappropriate use of dialysis by identifying QoL factors for EDP, facilitating discussions with family members and nephrologists, and continuing to advocate for the rights of EDP with poor QoL.

Dialysis patients' preferences for family-based advance care planning.

BACKGROUND: Most patients do not participate in advance care planning with physicians. OBJECTIVE: To examine patients' preferences for involving their physicians and families in advance care planning. DESIGN: Face-to-face interviews with randomly selected patients. SETTING: Community-based dialysis units in one rural and one urban region. PARTICIPANTS: 400 hemodialysis patients. MEASUREMENTS: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. RESULTS: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). CONCLUSION: Most patients want to include their families more than their physicians in advance care planning.

Failure of advance care planning to elicit patients' preferences for withdrawal from dialysis.

Although withdrawal from dialysis is relatively common among dialysis patients, little is known about the patients' consideration of withdrawal during advance care planning. We studied a stratified random sample of 400 hemodialysis patients in two geographic areas (all six dialysis units within 75 miles of Morgantown, WV, and all nine dialysis units in Rochester, NY) by reviewing responses to a questionnaire addressing issues of advance care planning. Interviews were performed by trained interviewers during a routine hemodialysis treatment. Fifty-one percent of the patients had completed an advance directive (29% had a living will and a health care proxy, 22% had a living will or proxy). Patients who had completed advance directives were more likely to have notified their decision makers of their roles (91% with a living will and health care proxy, 81% with a living will or proxy v 55% who had no advance directive; P < 0.01). Most patients had not discussed their wishes for specific interventions in the event of permanent coma: 41% had discussed mechanical ventilation; 35%, tube feedings; 25%, cardiopulmonary resuscitation; and only 18% had discussed stopping dialysis. Patients who had completed a living will and proxy were most likely to have discussed end-of-life care, but stopping dialysis was the least often discussed intervention, even in this patient subset. Sixty-nine percent had discussed mechanical ventilation; 55%, tube feedings; 43%, cardiopulmonary resuscitation; and only 31% had discussed stopping dialysis (all P < 0.001). Although withdrawal from dialysis is relatively common, it is rarely discussed in advance care planning by dialysis patients. Dialysis unit staff and nephrologists should address issues involving withdrawal from dialysis with their chronic dialysis patients.