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OBJECTIVE: To identify the desired features of end-of-life medical decision making from the perspective of elderly individuals. DESIGN: Qualitative study using in-depth interviews and analysis from a phenomenologic perspective. SETTING: A senior center and a multilevel retirement community in Los Angeles. PARTICIPANTS: Twenty-one elderly informants (mean age 83 years) representing a spectrum of functional status and prior experiences with end-of-life decision making. MAIN RESULTS: Informants were concerned primarily with the outcomes of serious illness rather than the medical interventions that might be used, and defined treatments as desirable to the extent they could return the patient to his or her valued life activities. Advanced age was a relevant consideration in decision making, guided by concerns about personal losses and the meaning of having lived a "full life." Decision-making authority was granted both to physicians (for their technical expertise) and family members (for their concern for the patient's interests), and shifted from physician to family as the patient's prognosis for functional recovery became grim. Expressions of care, both by patients and family members, were often important contributors to end-of-life treatment decisions. CONCLUSIONS: These findings suggest that advance directives and physician-patient discussions that focus on acceptable health states and valued life activities may be better suited to patients' end-of-life care goals than those that focus on specific medical interventions, such as cardiopulmonary resuscitation. We propose a model of collaborative surrogate decision making by families and physicians that encourages physicians to assume responsibility for recommending treatment plans, including the provision or withholding of specific life-sustaining treatments, when such recommendations are consistent with patients' and families' goals for care.

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The Hermansky-Pudlak Syndrome (HPS) is an autosomal recessive inherited disorder characterized by oculocutaneous albinism, tissue accumulation of ceroid pigment, and a mild to moderate bleeding diathesis attributed to storage-pool deficient (SPD) platlets. Patients have platelet aggregation and release abnormalities. In addition, low levels of plasma von Willebrand factor (vWF) antigen in some HPS patients have been associated with a greater bleeding tendency than would be predicted from either condition alone. Other HPS patients have severe bleeding despite normal levels of plasma vWF, suggesting that at least one additional factor is responsible for their bleeding diathesis. Because platelet vWF levels have been well correlated with clinical bleeding times in patients with von Willebrand's disease, we have measured the platelet vWF activity and antigen levels in 30 HPS patients and have attempted to correlate their clinical bleeding with these values. The platelet vWF activity levels in patients was significantly lower than that of normal subjects (P < 0.0001). The patients as a group also had slightly lower values of plasma vWF activity when compared with normals (P-0.03). In 11 of the HPS patients, the multimeric structure of plasma vWF showed a decrease in the high molecular weight multimers and an increase in the low molecular weight multimers. In correlating the platelet and plasma vWF values with the bleeding histories, we were not able to show a predictable relationship in the majority of the patients.

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BACKGROUND: During serious illness, patient preferences regarding life-sustaining treatments play an important role in medical decisions. However, little is known about life-sustaining preference stability in this population or about factors associated with preference change. METHODS: We evaluated 2-month cardiopulmonary resuscitation (CPR) preference stability in a cohort of 1590 seriously ill hospitalized patients at 5 acute care teaching hospitals. Using multiple logistic regression, we measured the association of patient demographic and health-related factors (quality of life, function, depression, prognosis, and diagnostic group) with change in CPR preference between interviews. RESULTS: Of 1590 patients analyzed, 73% of patients preferred CPR at baseline interview and 70% chose CPR at follow-up. Preference stability was 80% overall-85% in patients initially preferring CPR and 69% in those initially choosing do not resuscitate (DNR). For patients initially preferring CPR, older age, non-African American race, and greater depression at baseline were independently associated with a change to preferring DNR at follow-up. For patients initially preferring DNR, younger age, male gender, less depression at baseline, improvement in depression between interviews, and an initial admission diagnosis of acute respiratory failure or multiorgan system failure were associated with a change to preferring CPR at follow-up. For patients initially preferring DNR, patients with substantial improvements in depression score between interviews were more than 5 times as likely to change preference to CPR than were patients with substantial worsening in depression score. CONCLUSIONS: More than two thirds of seriously ill patients prefer CPR for cardiac arrest and 80% had stable preferences over 2 months. Factors associated with preference change suggest that depression may lead patients to refuse life-sustaining care. Providers should evaluate mood state when eliciting patients' preferences for life-sustaining treatments.

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Empirical evidence suggests that mortality rates for coronary artery bypass graft (CABG) surgery are lower in hospitals that perform a higher volume of the procedure. In recent years, the criteria for CABG surgery have been expanded to include patients with a wide variety of co-morbidities. To address the question of whether the volume-outcome relationship continues to exist for this new group of patients, discharge abstracts for 18,986 CABG operations at 77 hospitals in California in 1983 were analyzed using multiple-regression techniques. Higher-volume hospitals had lower in-hospital mortality (adjusted for case mix); this effect was greatest in patients who might be characterized as having "non-scheduled" CABG surgery. Higher-volume hospitals also had shorter average postoperative lengths of stay and fewer patients with extremely long stays. The results of this study suggest that the greatest improvement in average outcomes for CABG surgery would result from the closure of low-volume surgery units.

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Paying physicians for an episode of care is a possible alternative to current fee-for-service payment. We studied physician billing patterns for 512 Medicare beneficiaries who received coronary artery bypass graft (CABG) surgery in 1983. Relatively elaborate decision rules had to be created to exclude services that were not part of a routine CABG. We found that 72% of charges for an episode were associated with services provided on the day of surgery. Forty-seven percent of charges were by the primary surgeon, 15% by the assistant surgeon(s), and 9% by the anesthesiologist. Our results suggest that episode-of-care payment is a complex, and somewhat costly, alternative to other methods of prospective payment to physicians, although selective contracting by a health insurer for an episode of care for certain procedures might both reduce costs and improve quality.

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