Family members and friends who help beneficiaries make health decisions.

People enrolled in Medicare often turn to family members and friends for help in making health decisions, including Medicare health plan choices. To learn how family members and friends participate in decisionmaking, what information they currently use, and what information they would like, we held eight focus groups in San Diego and Baltimore. Although responses were different in the two markets, participants in both cities reported receiving inadequate information and indicated they were largely unaware of available CMS-supported information. Beneficiaries want easy-to-use print materials targeted to their needs and opportunities to participate in seminars and receive personal counseling.

Family satisfaction with end-of-life care in seriously ill hospitalized adults.

OBJECTIVE: To examine factors associated with family satisfaction with end-of-life care in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). DESIGN: A prospective cohort study with patients randomized to either usual care or an intervention that included clinical nurse specialists to assist in symptom control and facilitation of communication and decision-making. SETTING: Five teaching hospitals in the United States. PARTICIPANTS: Family members and other surrogate respondents for 767 seriously ill hospitalized adults who died. MEASUREMENTS: Eight questionnaire items regarding satisfaction with the patient's medical care expressed as two scores, one measuring satisfaction with patient comfort and the other measuring satisfaction with communication and decision-making. RESULTS: Sixteen percent of respondents reported dissatisfaction with patient comfort and 30% reported dissatisfaction with communication and decision-making. Factors found to be significantly associated with satisfaction with communication and decision-making were hospital site, whether death occurred during the index hospitalization (adjusted odds ratio (AOR) 2.2, 95% CI, 1.3-3.9), and for patients who died following discharge, whether the patient received the SUPPORT intervention (AOR 2.0, 1.2-3.2). For satisfaction with comfort, male surrogates reported less satisfaction (0.6, 0.4-1.0), surrogates who reported patients' preferences were followed moderately to not at all had less satisfaction (0.2, 0.1-0.4), and surrogates who reported the patient's illness had greater effect on family finances had less satisfaction (0.4, 0.2-0.8). CONCLUSIONS: Satisfaction scores suggest the need for improvement in end-of-life care, especially in communication and decision making. Further research is needed to understand how factors affect satisfaction with end-of-life care. An intervention like that used in SUPPORT may help family members.

Description of the SUPPORT intervention. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.

BACKGROUND: The purpose of Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) was to improve outcomes for seriously ill hospitalized adults by improving information and decision-making. The SUPPORT intervention has been characterized only briefly in previous publications. OBJECTIVE: To characterize the intervention in SUPPORT and its implementation. DESIGN: Reports derived from training and administrative materials, quantitative descriptions of implementation activities, and qualitative analysis of narrative reports and focus group participation by the intervention nurses. SETTING AND PATIENTS: SUPPORT enrolled 2652 patients in the intervention arm and 2152 in the control arm of a block-randomized trial of enhanced information, counseling, and support. The patients were hospitalized with one of nine serious illnesses in one of five US teaching hospitals between 1992 and 1994. MEASUREMENTS: (1) Reports on training and supervisory materials; (2) Rates of intervention component completion from contact logs and reports completed by the intervention nurses; and (3) grounded theory analysis of patient narratives, overview questionnaires, and focus group transcripts from the intervention nurses. RESULTS: Prognostic reports were delivered on time to the caregiving team in 83% of cases on Day 3. Reports of surrogate interviews of patient preferences and understanding were delivered on time to the caregiving team in 72% of first week cases. Patients' own reports of preferences were unavailable for 56% of cases in the first week. Overall, 39% of the rest of the patients had their interview information delivered on time to the caregiving team. The SUPPORT intervention nurses averaged 8.5 contacts with patients, 7.6 with surrogates, 3.5 with physicians, and 11.7 with other staff. The intervention nurses felt that they were fully involved in 81% of cases and had a limited role in another 14%. The major issues for patients were: understanding their situation, communication and decision-making, advance planning, do not resuscitate orders, and general support, including support for loss and grieving. The narrative sources showed that the nurses were enthusiastic, dedicated, and strong in their support of the study objectives. They identified various barriers to effectiveness and voiced doubt that the analytic targets would show an effect from the intervention. CONCLUSIONS: The SUPPORT intervention was implemented vigorously and completely.

Survey methods for seriously ill hospitalized adults: practical lessons from SUPPORT. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.

OBJECTIVE: To describe issues confronted in collecting questionnaire-based data in a large study of seriously ill hospitalized adults, discuss methods used to achieve acceptable results, summarize the reliability of selected measures, and explore challenges for patient-based research in this population. DESIGN: A prospective cohort study. SETTING: Five teaching hospitals in the US. PARTICIPANTS: 9105 patients, with a subset of 80 patients and 10 proxy respondents for reliability testing. MEASUREMENTS AND MAIN OUTCOMES: Response rates; percent agreement and Kappa statistics to assess test-retest reliability. RESULTS: A pretest and pilot test were used to help develop the assessment strategy, establish study procedures, and identify staff characteristics likely to facilitate the project. Achieving adequate response rates required great perseverance and flexibility by interview staff as well as close monitoring and central supervision. Standardized quality assurance with timely feedback, and social support provided by peer and supervising staff were both important. Older women proved to be the best interviewers. Reliability was acceptable for existing and newly developed scales to measure subjective health status, preferences, and satisfaction. CONCLUSIONS: It was possible to collect reliable and useful data on preferences and subjective health outcomes from a cohort of seriously ill hospitalized patients and their proxies. Achieving acceptable data quality required a large interview team, mature staff, flexibility about modes of administration, and centralized, structured quality assurance. Successful outcomes research in this population is likely to require similar planning and efforts.

Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.

BACKGROUND: Alleviating the problems faced by dying persons and their families has drawn substantial public attention, but little is known about the experience of dying. OBJECTIVE: To characterize the experience of dying from the perspective of surrogate decision makers, usually close family members (89%). DESIGN: Prospective cohort study. SETTING: Five teaching hospitals. PATIENTS: Persons who had one of nine serious medical conditions or were 80 years of age or older who died and for whom a surrogate decision maker completed an interview about the death. MEASUREMENTS: Medical records were reviewed and surrogate decision makers were interviewed. RESULTS: 4124 of 9105 seriously ill patients died (46%); 408 of 1176 elderly patients died (35%). The patients' family members were interviewed after 3357 persons (73%) had died. Of 1541 patients who survived the enrollment hospitalization, 46% died during a later hospitalization. In the last 3 days of life, 55% of patients were conscious. Among these patients, pain, dyspnea, and fatigue were prevalent. Four in 10 patients had severe pain most of the time. Severe fatigue affected almost 8 in 10 patients. More than 1 in 4 patients had moderate dysphoria. Sixty-three percent of patients had difficulty tolerating physical or emotional symptoms. Overall, 11% of patients had a final resuscitation attempt. A ventilator was used in one fourth of patients, and a feeding tube was used in four tenths of patients. Most patients (59%) were reported to prefer a treatment plan that focused on comfort, but care was reported to be contrary to the preferred approach in 10% of cases. CONCLUSIONS: Most elderly and seriously ill patients died in acute care hospitals. Pain and other symptoms were commonplace and troubling to patients. Family members believed that patients preferred comfort, but life-sustaining treatments were often used. These findings indicate important opportunities to improve the care of dying patients.

The influence of the probability of survival on patients' preferences regarding cardiopulmonary resuscitation.

BACKGROUND: Studies suggest that a majority of elderly patients would want to undergo cardiopulmonary resuscitation (CPR) if they had a cardiac arrest. Yet few studies have examined their preferences after clinicians have informed them about the outcomes of CPR. METHODS: To study older patients' preferences regarding CPR, we interviewed as many ambulatory patients as possible in one geriatrics practice in Denver from August 1, 1991, through July 31, 1992. RESULTS: A total of 371 patients at least 60 years of age were eligible; 287 completed the interview (mean age, 77 years; range, 60 to 99). When asked about their wishes if they had cardiac arrest during an acute illness, 41 percent opted for CPR before learning the probability of survival to discharge. After learning the probability of survival (10 to 17 percent), 22 percent opted for CPR. Only 6 percent of patients 86 years of age or older opted for CPR under these conditions. When asked about a chronic illness in which the life expectancy was less than one year, 11 percent of the 287 patients opted for CPR before learning the probability of survival to discharge. After learning the probability of survival (0 to 5 percent), 5 percent said they would want CPR. CONCLUSIONS: Older patients readily understand prognostic information, which influences their preferences with respect to CPR. Most do not want to undergo CPR once a clinician explains the probability of survival after the procedure.