End-of-life care after termination of SUPPORT.

During conversations, Mr. H often paused to catch his breath or to lift his oxygen mask and cough up thick secretions. An emaciated twenty-nine-year-old man with end-stage cystic fibrosis, he had been admitted to the hospital for intensive antibiotics and respiratory therapy, in the hope of slowing his downhill course. For him, lung transplantation was not possible because of a concomitant swallowing problem that resulted in aspiration and lung infections. Mr. H understood that his shortness of breath would get worse. He appreciated that if he suffered a cardiac arrest, the doctors believed that he would not survive the hospitalization even if CPR were attempted. He further realized that the physicians believed that if he required intubation and mechanical ventilation there was virtually no chance he could be weaned off the ventilator. His response was cogent. "My entire life has been a struggle. No one thought I would live this long. I've always beaten the odds. I've always been a fighter. I'll keep fighting until the man upstairs tells me it's time to stop. " The case of Mr. H suggests why the carefully planned, rigorously conducted SUPPORT study failed to show any impact on patient outcomes or the quality of terminal care. The SUPPORT study built upon several ideas. The baseline study showed that much terminal care in the U.S. is inappropriate. Many patients died after prolonged hospitalization or intensive care or in unrelieved pain. One-half of DNR orders were written near death, and 10 percent of patients died after spending four weeks in an ICU. The SUPPORT investigators identified several reasons for these problems. First, physicians are uncertain about patient prognosis, and this prognostic uncertainty contributes to the overuse of technology. Second, physicians do not know patients' preferences for life-sustaining interventions. Third, physicians fail to discuss options for care with patients and families. Because of poor communication, many patients receive aggressive life-sustaining interventions that they do not really want. The interventions in the study were designed to address each of these problems. The SUPPORT study tested whether a combination of interventions would improve the quality of terminal care. Attending physicians received computer-generated prognostic estimates and information about the patient's preferences for lifeprolonging interventions. Specially trained research nurses facilitated discussions among physicians, patients, and family members. These interventions increased opportunities for discussions about life-sustaining interventions in the hope that this would enhance informed patient decision-making and result in fewer high-technology interventions and more humane dying for patients. However, these interventions failed to change any endpoints in the study. Briefly, many patients in the intervention group who died during the hospitalization still had pain during their final days or spent many days in intensive care. Decisions to withhold and withdraw interventions, as measured by do-not-resuscitate orders, often still occurred only two days before death. Patients' wishes to withhold care were often overlooked. Among patients who did not want resuscitation attempted, fewer than one-half of their physicians understood that preference. The findings do not depict gentle, peaceful death, but high technology run amok with poor communication, inadequate relief of symptoms, and little respect for patient preferences. How can we explain these findings? What can we do to improve the process of dying? Are High-technology Interventions Inappropriate? The case of Mr. H suggests one possibility: many patients with a poor prognosis want high-technology interventions attempted and agree to limit interventions only after therapeutic trials have failed. One of my colleagues distinguishes between a bad prognosis and a really bad prognosis. According to her categories, patients in SUPPORT had a bad prognosis, but not a terrible one. …