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The autopsy is the ultimate “peer review.” Yet the autopsy has nearly disappeared from hospitals in the United States and around the world. It is rarely performed in the nursing home or other long-term care (LTC) setting. As a result, all of society has lost much, in terms of quality of health care, the skills of physicians, and insights gained through autopsy-based research. The elderly have the lowest rate of autopsies of any age group. This is a paradox, since the greatest quality and quantity of knowledge would accrue from the often surprising findings revealed at autopsy that reflect the acknowledged ‘multiple simultaneous illnesses’ occurring in older persons. This review and analysis describe why autopsy rates have fallen in hospitals and offer rationales and solutions for reversing this trend in the nursing home and other LTC settings.
The autopsy has nearly disappeared from US hospitals and from the hospitals of all nations.1 As a result, society has lost much in the quality of health care, the skills of physicians, and the insights gained through research. The elderly have the lowest rate of autopsies of any age group.2,3 This is a paradox, since the greatest quality and quantity of knowledge would accrue from the often surprising findings revealed at autopsy that reflect the acknowledged “multiple simultaneous illnesses” occurring in older persons.
In a vague way, the common rationale for not performing autopsies in the elderly relates to a supposed “kindness” on the part of families and clinicians reluctant to inflict further “discomfort” upon the deceased. Even more powerful as a deterrent to autopsy is the often unstated bias against learning more about an older person’s illnesses and the normal changes that come with age, both of which are dismissed as unimportant. Of course many other factors contribute to the decrease in autopsies; some of the most common are noted in Table 1 (page 15).
The autopsy is the ultimate “peer review” method. Through autopsy we discover our errors of omission and commission, noting unacknowledged diseases and normal though often unexpected age-related changes, while confirming insightful diagnoses. We learn causes of death or are humbled, perhaps, to see that the cause of death is so often less clear than we had concluded.
Beyond the anatomic insights that enhance knowledge and al low us to do better for all patients, are the established effective medical education programs based almost entirely on the revelations from the autopsy. The most widely acknowledged thinking process is the well-known “Clinical Pathological Conference” (CPC), which in past decades occurred at most teaching hospitals and at many community hospitals. Here the expert clinician attempts to correlate the clinical observations with the soon-to-be-revealed autopsy findings. The CPC has been a magnetic component of the weekly New England Journal of Medicine, helping to educate generations of physicians.
In a recent survey of resident physicians in internal medicine and in pathology at the Massachusetts General Hospital,2 the authors reported that of the more than 200 resident surveyed, most strongly agreed about the importance of the autopsy to their education and to the public health.
Surprisingly, these physicians in internal medicine reported that they were comfortable with requesting autopsies, but they emphasized the insufficiency of guidelines available from their mentors and from the hospital administration. Consequently the residents felt unable to answer many questions from family members about the procedure itself, about religious values, and about the regulations governing the autopsy.
There was not much concern by these resident physicians about malpractice implications or about costs to the hospital of the autopsy procedure.
This study made evident the need to strengthen the collaboration between internists and pathologists.
It is obvious that we improve the life of our citizens through the knowledge gained from autopsy. The gains noted above — strengthened medical skills, enlarged body of knowledge, advances in public health with containment of infections, and major scientific advances — often are only possible through study of the tissue within which a mysterious disease is occurring. The best examples of medical mysteries requiring study of tissue are Alzheimer’s disease and Parkinson’s disease, for which the causes and mechanisms are yet to be discovered within the tissues of the human brain.
In addition, families often benefit from autopsy; it yields new knowledge of hereditary illnesses that may then be prevented or slowed as a result of findings discovered at autopsy.
As seen in Table 2 (page 16), there are several approaches likely to improve the autopsy rate.
A survey of hospital administrators in eight US states reveals the distressing finding that with a median autopsy rate in hospitals of 2.4% and a cost of $852 per autopsy, 66% of hospital administrators agree that “current autopsy rates were adequate.”4 Of course, the median autopsy rate in teaching hospitals is somewhat higher than the rate in non-teaching hospitals, but it is still at a most moderate level. Most of these administrators believe that improved diagnostic tests significantly reduce the need for autopsy. They also agree that payment to pathologistis for performance of autopsies might lead to an increase in autopsies.
The most distressing aspect of this study4 is the belief by hospital administrators that improved diagnostic technology makes the autopsy redundant and unimportant. Equally distressing is the link in the minds of administrators between predictable concerns about cost control and continued restriction of autopsy.
There are approximately 7000 skilled nursing facilities in the United States and about 13,000 other facilities for long-term care. As stated earlier, the deaths of older people now occur much more frequently in nursing homes; some studies have estimated that 33% of all elder deaths occur in these settings.5 This remarkable increase is primarily attributable to the US government’s DRG program, which clearly encourages rapid transfer of elderly patients from hospitals to nursing homes. With rare exceptions, nursing homes are not capable of providing autopsies, nor is this expected of them when even their community hospitals are not performing these procedures. Thus, by regulation, we have set the autopsy rate to move toward zero. Many other nations show similar rapid transfer of patients from hospital to nursing home.3
Since we will not be reverting to a system under which older persons die in hospitals, we will have to create autopsy programs for the elderly who die in nursing homes.
One such autopsy program conducted at Jewish Home LifeCare, a teaching nursing home formerly known as the Jewish Home and Hospital for the Aged of New York, has contributed to the strong quality of clinical care at that facility. In addition, the active training programs for medical students and postgraduate fellows and residents at that facility are bolstered by ongoing pathology conferences that interface with the autopsy program.
Along with the clinical insights and educational benefits derived from this nursing-home autopsy program, it has produced research insights in several subject areas, including the neurodegenerative disease so frequent in older persons. This research has placed particular emphasis on Alzheimer’s disease,6,14 Parkinson’s disease,15 and the processes of normal aging.
Autopsy studies also are providing insight into many other disease processes, including pulmonary embolism, 16 macular degeneration,17 gender differences in illness, and many other cardiovascular and neoplastic illnesses.
Most autopsies are performed as full autopsies and include a study of most vital organs. At times, autopsies are restricted to one organ holding great interest for the clinician, researcher, and family. The best example of this is the brain; brain autopsy has resulted in a significant percentage of the advances made in study of Alzheimer’s disease and Parkinson’s disease.
Members of the lay public are surprised to discover that many diseases — including Alzheimer’s disease — cannot be diagnosed accurately without an autopsy. Even with an autopsy, the cause of death in older persons is demonstrable in only about 70% of cases.
Additionally, information derived from autopsies often benefits the patient’s relatives. In one survey of family members of approximately 100 patients who had died in a teaching hospital in the United Stales, most responded that they considered the autopsy beneficial, that they found some comfort in knowing the cause of death, and that it reassured them to know that the clinical care was appropriate and that their relative’s autopsy contributed to the growth of knowledge.1
Communication between physicians, hospital administrators, and families concerned with the autopsy is essential to the growth of the autopsy program. As stated above, families appreciate knowing the specific details of their relatives’ illnesses, rather than being left in the dark about deaths from unexplained causes.
As shown in Figure 1 (page 17), the autopsy rate at the teaching nursing home with which the authors are affiliated (Jewish Home LifeCare of New York) is remarkable. Over the course of many years our rate has exceeded the autopsy rate of most teaching hospitals in the United States (Figure 2, above). The autopsy rate (12% to 20%) at this nursing home reflects the efforts made by its clinical and research staff, along with support from the leaders of the administrative staff and board of directors. In existence for more than 50 years, the autopsy program was strengthened and the autopsy rate accelerated when the nursing home developed a partnership with Mount Sinai’s Department of Geriatrics and Adult Development in 1982,18,19,20 as well as a linkage to the Departments of Pathology and Psychiatry at Mount Sinai School of Medicine.
This autopsy program has contributed to the education of more than 2500 medical students who have trained at the nursing home as well as to the education of 125 fellows in geriatric medicine. It has also served the educational growth of primary care physicians and nurses who have been part of the Jewish Home LifeCare system.
It is remarkable that patients, families, friends, nursing-home clinicians, administrators, boards of directors, and affiliated hospitals all have come to support the autopsy program at Jewish Home LifeCare. The autopsy program is linked to the quality of care, which helps to make this teaching nursing home a respected entity in the community. While there have been elements of resistance to the autopsy program, as one would expect, time and performance have nurtured trust in the program and its society-wide goals to do good.
The Mount Sinai School of Medicine Brain Bank, under direction of V. Haroutunian, has certainly helped catalyze the success of the autopsy program at the Jewish Home LifeCare. The partnership of the Brain Bank, the Mount Sinai School of Medicine, and the Jewish Home LifeCare has benefited all three participants through the program’s level of quality and its advancement of knowledge and care. Indeed, the presence of approximately 500 of the brains at the MS Brain Bank —about 35% of the specimens at this vigorous and productive brain bank —results from the willingness of JHL patients and families to contribute to the advancement of knowledge and scientific insight.
The studies have not only provided insights into brain diseases such as Alzheimer’s disease and Parkinson’s disease; they also have allowed us to study the processes of normal human aging and compare their changes to those of the neurodegenerative diseases. Thus a recent study highlighted the discovery that in the very old (those beyond 80 to 85 years of age) the density of plaques and tangles in patients with Alzheimer’s disease was significantly reduced compared to those of the young old (65 to 75 years) Alzheimer’s patients. This report from the collaboration strongly suggests a reconsideration of the role of plaques and tangles and of the normal aging of the human brain and mind.21
The autopsy needs to be restored to the health care system in order to achieve improved cost-effective and human-effective goals. The approach to enhancing the autopsy rate in the United States is described in detail.
The authors gratefully acknowledge the active participation in this autopsy program of the Jewish Home LifeCare’s entire primary care clinical staff with particular appreciation of Drs. P. Toledo, M. Camargo and P. Sharma. We also thank the nursing department, the medical records department, and Ms. Violet Derrick for her assistance with preparation of the manuscript.
We appreciate the Leir Foundation for their support, in part, of the autopsy program and the support of grants NIH-AG02219 and NIH-AG05138.
Disclosure: The authors declare that they have nothing to disclose.
Leslie S. Libow, Distinguished Clinical Professor, Jewish Home LifeCare, and Clinical Professor, Department of Geriatrics and Adult Development and Department of Medicine, Mount Sinai School of Medicine. New York City.
Richard R. Neufeld, Medical Director of the Manhattan Campus-Jewish Home LifeCare, and Associate Clinical Professor, Department of Geriatrics and Adult Development, Mount Sinai School of Medicine.