Miracles, Choices, and Justice
Authors: David B. Reuben
Journal: JAMA (2010)

THE LANDMARK PATIENT PROTECTION AND AFFORDable Care Act of 2010 will soon extend insurance coverage to millions more individuals in the United States. Simultaneously, the first of the baby boom generation will reach age 65 years and enter the age group that has the highest rates of health care use. Meanwhile, technological advances in medicine continue to proliferate. As these trends intersect, difficult questions will arise about the who, what, and for how long of health care. The stories of 2 patients provide insights into the present and future states of health care in the United States. The first patient was an 89-year-old woman with atrial fibrillation and functional impairment requiring a caregiver 24 hours per day. She presented with acute rightsided hemiplegia and global aphasia. During the emergency department evaluation, she developed respiratory distress and was intubated. A middle cerebral artery clot was found on angiogram but a mechanical embolectomy to remove it was unsuccessful and the patient remained obtunded, unresponsive to verbal stimuli, with no spontaneous movement of the right upper and lower extremity. The patient’s son, who was her durable power of attorney for health care, remained hopeful for some recovery and wanted to proceed 10 days later with tracheostomy and gastrostomy tube placement. Two months after admission, her clinical status had not improved and she was transferred to a long-term care facility for ventilator-dependent patients. For this patient, it was the best and worst of times. She had access to a remarkable array of medical services that might have been helpful, but were not. For her, it was the age of hopelessness. Because of her son’s decisions, she was maintained in a state that most would not want. The second patient was an 81-year-old homeless woman with Parkinson disease who presented with a urinary tract infection. She had recently been discharged to a shelter after a prior urinary tract infection. On several previous occasions and now, her medical needs had met criteria for postacute rehabilitation but she had exhausted her 100 days of coverage under Medicare and would again need to be discharged to a shelter. In medicine there are 3 do’s: the can do, the actually do, and the should do. The can do reflects what is possible and is driven by science and technology. The can do has no bounds; more is always better. Innovations that treat disease are desirable and the government (eg, through the National Institutes of Health), foundations, and the private sector promote advancement of the can do. During the past 30 years, the can do has increased substantially and will continue to do so. Procedures and devices such as thrombectomies, intracardiac defibrillators, and stents for a variety of vessels were science fiction in the 1970s. Now they are commonplace and more are on the way. In contrast, what is actually done for patients is driven by clinicians and patients and is determined by availability of services, access to these services, insurance, practice patterns, and patient and clinician choices. Like the can do, the actually do has also increased over the last 3 decades. Discrepancies between what is possible and what is actually done result from underuse (failing to provide recommended care) or appropriate use (the should do). However, these discrepancies are not as large as they should be. The care that is actually provided also includes the provision of inappropriate health care that does not benefit patients (eg, unnecessary tests and procedures). Overuse is waste, which by some estimates is responsible for up to 30% of the health care spending. On the whole, the scorecard for the care actually provided is not impressive. Health care in the United States is characterized by high expenditures, poor performance on quality measures, and poor health status compared with other countries. The should do is determined by medical evidence with modification by personal, societal, and ethical values. For the first patient, the physicians believed that the should do was to provide comfort care during terminal illness and attempted to convey this to the patient’s son without success. Situations such as this are common in practice and often lead to countless hours of discussion and sometimes animosity between patients’ families and physicians. To date, there has been little investment in promoting the should do. At both individual patient care and